Ones and Zeros

I know that the battle cry of Komen and pink crap sellers, “1 in 8,” is a bit of a myth as it is relevant to lifetime risk, not just women of any (younger) age. I know this is misunderstood by many of those lucky enough to not reside in Cancerville. I see the point made by those who criticize Komen and pink crap pushers when pointing out the statistic is twisted to sell pink crap and fear; and from that fear mammograms and unnecessary procedures are sold as well. I get it, I do. It always irritates me that percentages, averages, majorities, stats, and just plain old concrete numbers are presented in a manipulative way in order to obfuscate facts to get people to spend money. Since this happens every day for every cause and/or product for which there is a stat, I am destined to live my life in a state of constant, mild irritation. No matter, I am always mildly irritated about something, I am a curmudgeon after all. Fuzzing over the facts to make money happens in every industry, why should the breast cancer industry be any different.

Make no mistake I am certainly in the criticizing-of-pink camp. And in theory, I agree with this criticism of the way 1 in 8 is presented. It is wrong to misrepresent the whole truth, even to get good will and funding for research. But deep in my gut, and my heart, I am irresolute.

Often in critiques of the misuse of the stat I see the analogy of a group of 8 women in a room, looking around at each other, wondering which one of them will get or has cancer, and for the 1 in 8 stat to be realistic, that room needs to be in a senior center, since it represents a lifetime of risk. A group of women in a college dorm room have less, some say nothing, to fear.

But here’s the thing: being just a few days shy of 39 when I was diagnosed, I am 1 in 233. No matter how many times you gather 233 women who are between 30 and 39, I never get to be one of the 232. I will always be “The One”. Insert random, lame Neo/The One/Keanu Reeves/”The Matrix” joke here.

source: mozillablog

The odds may be ever in the younger woman’s favor, which may seem like good news, but I can’t say it’s much fun being one of “The Ones”. Maybe I wish I really did live in the science fiction world of “The Matrix”. Hey Morpheus, which pill, the red one or the blue one, makes my reality cancer free?

Maybe this is my only child self-centeredness, my self-involved cancer patient orientation, or heck, just simple natural human instinct to be self-absorbed, but I do look at this through the lens of my own experience. And from where I’m standing, I got cancer when the odds said I shouldn’t, so I’m not sure I could be very convincing in telling any roomful of 39 year olds (233 of them) not to buy into the deception of 1 in 8, because I am one horror story in 233.

Of course, that is not to say I’m in the “a mammogram saved my life” group, quite the opposite in fact (read my About page), for me mammography is next to useless. I won’t be giving any cancer advice in a peer program anytime soon, since I do not toe the pink line. As stated above, I am squarely in anti-pinkwashing group. Maybe the worst/best/most interesting piece of this is that the 1 in 8 slogan may be pinkwashing’s undoing. Willful deception by not being transparent and completely honest will just cause an unpleasant backlash if people ever pay enough attention to become wise to the true nature of the statistics. That is just ONE simple reason non-profits need to be above reproach. Furthermore, if pink marketing is still pointing to such a devastating statistic as an argument that more fundraising is needed, at what point will people begin to question, “hey we’ve given all this money and the stats have not decreased, and there is no progress?” When will it become a lost cause? When that happens, will the fundraising income dry up?

I once read a comment or tidbit that researchers and number crunchers cannot think about the people the statistics represent. Again, in theory I understand that, but as a person who IS a statistic, I don’t. I’ve mentioned this before (here), just because a disease impacts more people, does not make it more important to those impacted by the rarer disease, a lower statistic. While doing research and potentially making a breakthrough in diseases (and types or strains of diseases) that affect the many rather than the few may get more money and glory, but so little changes for the few who represent all the ones out of the bigger numbers.

But ultimately, maybe I just don’t care if any cancer patient—of any age—is 1 in 8 or 1 in 1,000,000. How about changing all the 1s to 0s? Isn’t that the goal, what we all want?