Deserving Cancer

In those first overwhelming weeks of diagnosis, seemingly endless tests, and the infusions of The Red Devil, I wanted to throttle Keith Richards. Yes—that Keith Richards, from the Rolling Stones. Why? Because a couple of comedians have pointed out that when an apocalypse happens, only Richards and some cockroaches will still be left alive. He is the symbol of rock and roll excess (or one of them, I’m letting Led Zeppelin slide today) and survival. He survives while so many other misbehaving rock stars overdosed, suffered, died. There he is, still on my TV, cancer-free. I needed someone to be angry at, and he fit the bill.

I’ve never done any illegal drugs and I’ve trashed nary a hotel room, yet here I am “punished” (that concept is up for debate in this post) with all this cancer. Oh sure, I’ve done some things I regret—who hasn’t? And while I haven’t been super-exercise-y and health-nutty, compared to a few folks I know, I’ve done pretty well. Well, before cancer that is, I kind of don’t give a shit anymore. But these friends and others I know who thrive on fried junk food are fine; no cancer, and here I am, I had all that cancer. And before anyone gets into a tizzy, no, I’m NOT wishing cancer on these other folks. It’s just with the amount of headlines on magazines in the grocery check-out line—eat this to prevent cancer, excess that causes cancer—the fact that I got cancer when those who indulge in less healthy habits didn’t, well, it can just be confounding. That is all I mean.

I’m talking about the physical, cause and effect, environmental factors for the most part, but I’m kind of talking about the karma aspect too. (Note—I know karma does not work like that, you get punished in your next life—but like most idiot Americans, I am misappropriating the meaning to get my point across). I know of too many stories of other cancer patients who did life all “right” while their relatives and friends have, um, done some shady things, and those folks are enjoying fine health. I know, it is not up to individuals to judge others. But when you are dealing with cancer, sometimes the pettiness of “why me and not them?” oozes out. Some folks, myself included, have asked: “What have I done to deserve this?”

The “why me” issue was a bigger deal for me back when I was in, and freshly out of, treatment. It is a little less so these days. In fact, I began writing this post in my very early days of blogging, but pushed it aside because I don’t grapple with the issue of what caused my cancer as much. But every now and then, something, or a few somethings, pop up to make me confront it again.

What really set me off was the announcement about DDT causing breast cancer. I happened to learn about it in this article, which finished with these irritating final sentences:

While it’s impossible for women to know how much DDT they were exposed to years ago or to go back and change things, there are still steps women can take to reduce their risk of breast cancer, says Karen Kostroff, chief of breast surgery for the North Shore-LIJ Health System in Lake Success, New York.

If you smoke, quit smoking. If you are overweight, work to lose some pounds, she suggests. “Focus on the things you can control,” she says.

While I understand the “no use crying over spilled milk” message Kostroff is sending, the emphasis on individual responsibility and the illusion of control makes me nuts. No, I’m not suggesting humans should be allowed to indulge in any “bad” behavior and not expect consequences. It’s just that when I see statements like this, I immediately read it as a way to blame patients. I ranted about this issue ages ago on this blog in Did You? (read it to understand my point in this post).

I don’t know about other breast cancer patients, but I needed NO encouragement to fall into the bad pattern of trying to figure out what caused my cancer. I remember listening to “Breasts: A Natural and Unnatural History” by Florence Williams a while ago, specifically the part when she discussed exposure to plastics in young children. My mind immediately fled back to back to the summer of 1977; I was 5 going on 6, and I just witnessed the phenomenon of Star Wars. I began collecting the action figures. With great happiness I saved up allowance and chore earnings to add a new doll or spaceship toy to my little universe. Oh, the smell of freshly unpackaged Star Wars action figure—I would just inhale it and loved it the way adults love New Car Smell! (Yes, I still have my collection, unpackaged, so yes I understand they are “worthless”. But not to me.) I never played with Barbie or my life-like baby doll ever again. Growing up in the 70s was GREAT! Uh-oh, did my childhood nerd joy cause my cancer? The thought just kills my spirit.

But, hey, no use crying over the proverbial milk I spilled, right? My point is, the general population loves statements like Kostroff’s, they must; so they can convince their own selves that they are “safe”. It is fear that drives the blame. (Seriously just repeating myself here, read Did You?, my post from early 2014) Cancer and death are scary things, and the idea of doing everything “right” gives people a false sense of control, of security. I no longer have a sense of those things.

But it isn’t just the physical, environmental causes that are part of the blame game. A few random comments on this blog and elsewhere remind me that too many people buy into just world theory. The classic “cancer makes you a better, enlightened person” nonsense is wrapped up in this. Too many people say to me and others that cancer is some kind of wake-up call from the universe—to enjoy life, to re-prioritize, to value people, choose happiness, whatever. I’ve always hated that expectation of cancer-induced self-improvement, mainly because I did not seem to be improved. What is becoming clearer to me each day is how insulting that expectation is—for everyone.

What? So I was some intolerable person before cancer and I needed a threat from the universe to shape up? I was such an asshat I deserved cancer to put me in line? Am I as big an asshat as Keith Richards (or insert some other infamously bad behaving person who has not had cancer)? Are the people asking this question, or saying the “the universe was sending you a message” to cancer patients—what, are they perfect, and not in need of any life lessons, and that is why they do not have cancer?

I get it, I do. Some folks need to embrace the “everything happens for a reason” concept, I suppose it is a coping mechanism. For me it was the opposite, I found it emotionally damaging. While the idea that cancer, and by extension life and the universe, is random is scary for many, I find it comforting.  The strict adherence to rules, to one cause and one effect, makes me blame myself. Of course I understand that there were likely many contributing factors that caused my cells to divide too much and form a tumor. Some factors may have been the result of things I did (or didn’t do), and some were likely out of my control. But I am no better, and certainly no worse, than all those not “punished” by cancer.

Clearly, I am still bothered by the concept of blaming patients—why else would I still be writing posts about it? But here is the trick: I can read that statement from Kostroff, I can read comments on my social media from others being told cancer is some message from the universe, and I can recognize these things as damaging. And I can roll my eyes, take a breath, and not let my mind spin out of control with worry and self-doubt now.

These days, I am not gripped with an urge to injure Keith Richards (well, MOST of the time). I will always stand up to idiotic statements that imply cancer patients got what they deserved—and to the people who make such statements. But it hurts a little less.

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Mean Streak

As I’ve said many times, cancer did NOT make me a better person. Those treacly articles and captioned pictures present on so many internet feel-good stories are just not my story. I did not learn to re-prioritize my life, cancer did not teach me life is precious, blah, blah, blah. Cancer merely made me more myself, I often think. And cancer has uncovered a rather mean streak in me, I am sorry to admit.

I know, I know, one should never read comments on articles, but sometimes I still cannot help it. Every now and again, I see something really awful. This has happened a couple of times so far in 2015.

When Jolie hit the news again a few months ago with her surgeries, the usual chit chat started about surgery as prevention, BRCA issues and so on. I found one really disturbing comment from someone saying something like everyone dies, implying Jolie should not have done something so extreme to prevent cancer, to attempt to prolong her life. It really upset me. Then, just the other day I read another story about how the rising costs of life-saving cancer drugs are putting those very drugs out of reach for some patients. (Is it just me or does that make them um, NOT life-saving? Moving on….) Of course the first comment I ran across said that one or two more years are just not worth bankrupting oneself or one’s family just to feed the greed of big pharma because after all, death is inevitable.

When I see sentiments like this expressed, I am shocked and angry. How quick some folks are to throw away the lives of people with terminal cancer! It is so very easy for these people I suppose, to make statements like this when they do not face a cancer diagnosis. Or maybe they have faced, or are facing, a cancer diagnosis, but that still does not give them the right to determine what a year or two of more life is worth to another.

This is where my mean streak rises up, a meanness I did not know I possessed before cancer. Gee I guess I did learn something from cancer (eye roll). I would never wish actual cancer on another, but I cannot help but want others to feel what it is like to have cancer (without actually having it): all the uncertainty, the wondering if it will come back and take your life. So when I read a comment like “we all gotta die sometime”, my knee jerk reaction is “yes we do, but you first—I want to live as long as I can”. I know it is an awful thing to say, but I have felt this way for a while now.

Maybe that “life is short, live every moment” lesson that gets spouted in cancer stories is a little different for me. I always knew life to be short, precious, and that I should not be wasting time doing stuff I hate. What is clear to me now, or at least I think about it more these days, is how much I want to remain alive. It was easy, before cancer, to use “life is short” as a rationalization for silly things: life is short, go on that trip, buy the dream house, etc. My view has shifted slightly. This is a more nitty gritty, how far will I go to stay alive, and why, kind of view. I suppose some of the “everyone dies sometime” commenters would view my life as expendable: I do not have children, nor siblings so no nieces and nephews, I am not destined to do great things, I spend most of my blogging time curmudgeon-ing—what does my life matter?

But that is the thing—I don’t have to justify my existence to them. My life matters to me, and I’ll do what it takes to keep it.

Yes, we all gotta go sometime, excuse the hell out of me for wanting to delay that.

Reciprocity and Respect

Long ago I reposted or tweeted some official-medical journal type article about how the warrior language can be damaging for many cancer patients. This was a report about a study on the issue, NOT some random blogger opinion piece. I got some comment or push back from someone, protesting that many folks found it helpful to be warriors, and they were tired of getting criticized for it.

It was weird because 1) I did not write the article, much less conduct the study and 2) I was merely posting it, not criticizing, and I did not find the language of the article to criticize the folks who do use the warrior language. Even weirder, it seemed like the victor claiming to be the persecuted to me—the warrior language is pretty pervasive and accepted as the social norm. Sure lots of bloggers post about their discomfort with the term, but it has not resulted in some cultural shift in which the word is used less, and folks identifying as warriors are in the minority. Cancer warrior is a commonly used term in society, in the media, in the Livestrong culture that still persists today.

The exchange with the person ended with the person saying something along the lines of if I don’t like it, don’t use it, but don’t criticize those who do. This was the weirdest part of all. Why? Because I don’t use it (so I did not need to be advised to not use it), but that NEVER stops others from using it to describe me against my will.

I’d largely forgotten about the exchange (I cannot even remember when it happened, certainly within the past year, and really have no idea which social media platform it all occurred on). But perusing some Facebook posts tonight, on National Cancer Survivors Day, I saw a few posts by bloggers who are not fans of the day, particularly some metastatic bloggers. I was shocked to read some comments on one post in which commenters flat out told the blogger she was indeed a survivor—any day she gets up she is a survivor.

Wow.

After all this time since my cancer experience began, I am still shocked at how disrespectful people can be. How dare this person force an identity on another, when the blogger, a woman with metastatic cancer, does not self-identify as a survivor? The gall of one person infringing on the wishes of another never ceases to amaze me.

I wish to be clear here. It is true, I do not like terms such as warrior and survivor and do not use them to describe myself. I have very specific reasons why I dislike them. If others wish to use them, fine. Everyone’s preference should be honored.

But I expect reciprocity—stop calling me words I will not use about myself. Everyone deserves this simple act of respect.

Addendum: Please know that I am speaking about ANY time someone labels me (or others) survivor against our wishes. Even if it is done gently, not in an attacking manner, it still is dismissive and patronizing.

Perhaps the reason I am so edgy about this is that when someone calls me warrior or survivor against my express wishes, it makes me think that they think I do not know my own mind. I do. The best analogy I can give is this: I never wanted children. From my teen years until my mid-30s, people would tell me–a grown woman–that I’d probably change my mind. I never did, I’m very happy with my choice. What makes people think they know me better than I know myself? I put up with it for too long on the not having children issue. I’ll be damned if I put up with it in CancerLand.