Of Causes and Controversy

I was supposed to have Seamus draw the winners of the Save 2^nd Base t-shirts last night. You can see from the photo that he was too wiped out for that. And since there were only five of you (for reasons I think I’ve figured out…and we’ll get to that), I think you all deserve a shirt. I’ll get two more. As long as one of you can wear a small! So Chrissy, Sara, Rina and Pinder92 (that’s Stacey, I think…, and mom---I have your address!) email me with your addresses and size and I’ll get you the shirt. That is, if you still want it after reading this post. And I hope you do (want it…and read the post.)

This has been a dramatic week in the breast cancer blogger realm. A controversy has exploded over, on a micro- level, the Feel Your Boobies organization, and, on a macro- level, what’s appropriate in raising funds for breast cancer—and where that money goes. I was thinking I’d stay out of the fray. And then I realized that like a big, lumbering, drunken bear, I’d actually already stumbled into the woods of this controversy and I’d stumbled in on the side of the pink bunnies (not the strong, dominant bears that I’d like to think I’d be teamed with!). If so many folks were upset about Feel Your Boobies and Save the Ta-Tas…oh good inanimate object of reverence…what must they think of Save 2^nd Base!! While this controversy was raging, here's my little blog with a big ol' photo and shirt giveaway for Save 2nd Base. And holy beagle—I have a Save the Ta-Tas t-shirt…and a Feel Your Boobies t-shirt….and (*the shame*) I like them. Maybe I haven’t given enough thought to all of this. Is that possible? Even having gone through breast cancer myself?

When I was first diagnosed and during treatment I continually had this vague (and then less vague) feeling that I was doing things wrong. Somehow, I was not handling breast cancer like I was supposed to. I always seemed to feel, act and express myself “differently.” I didn’t cry, I wasn’t angry, I wasn’t a big fan of pink, I don’t ever want to walk in a race/walk/ anything that might make me sweat, and I didn’t want to go to support groups, I didn’t pray or go to church and I didn’t spend any time worrying, panicking or even thinking about what caused my cancer—I figure if scientists haven’t figure it out yet, I’m not likely to figure it out sitting at my desk in my p.j.s at two in the morning. I got treatment, kept working, blogged about all the indignities of treatment, finished treatment, had a party and well…that was it. Oh no, wait, I got involved in a local breast cancer resource center and am actively fundraising for them. So, yeah, I did it all wrong, apparently. But I got through it (so far…we’ll get to that too) and I did it the only way I knew how. Eventually that feeling that I did it wrong went away.

But now it’s back. And it’s back because of this controversy this week. I’ve been reading a lot of blogs and Facebook posts by people I really respect and once again…I find myself on the other side. I find myself not able to agree with the people who seem to be really smart, caring, concerned, involved (in the breast cancer “movement” for lack of a better term) individuals. And what’s worse, I’m feeling marginalized and as though the work I’ve tried to do with The Pink Ribbon Place and fundraising is somehow wrong. Or not important. Or misguided.  And none of that is right. So while my initial response was to stay out of the fray…I can’t. I feel the need to speak up on at least a couple of points.

If you want the background on the specific controversy and the differing viewpoints (differing from me, not from each other), I refer you to several well-written blogs: Uneasy Pink, Nancy’s Point, The CancerCulture Chronicles, and Dear Mom: Can you Get Letters in Heaven. Start with Uneasy Pink because that’s where the controversy started (not through her intentional doing). Well, actually the controversy started on the Feel Your Boobies Facebook page, but Uneasy has screen shots of that on her blog (since many of the comments on the FB page for FYB have been removed—part of the controversy).  But I want to discuss things more generally—not directed at this specific happening.  I’d like to address the following arguments that I’ve heard in various places that I disagree with and just explain why.

1.       The idea/thought/argument that organizations like Feel Your Boobies, Save the TaTas, and, while they haven’t been mentioned yet that I’m aware of, probably Save 2^nd Base as well, are somehow trivializing or sexualizing breast cancer; that these organizations are “dumbing down” the issue.  I see these organizations as making a difficult subject more approachable. It’s easier to get someone’s attention with a catchy or yes even “pretty” or, yes, even "sexy" slogan than to incite fear in someone. The cancer is breast cancer--I don't know what word could be used in any campaign that wouldn't run the risk of being sexualized by immature and irresponsible folks out there. (Feel Your Breasts was not going to be a less polarizing slogan, but it is less catchy). The discussion about the importance of self exams, and mammograms and early detection is an important one. It needs to start somewhere, and it makes much more sense, to me, to start the discussion (note, I said start, not end) in a more manageable, approachable way. A way that makes a person smile and then think. I don’t think it’s helpful to start a discussion with the horrors of breast cancer. If we scare people we may scare them into denial—plenty of people already put off mammograms or neglect self-exams precisely because they don’t want to know. They don’t’ want to think about it. Denial can be strong.  So the start of the conversation, the beginning (which is where these organizations are functioning) maybe appropriately has a lighter touch. A key point here though is who these messages are intended for. It’s not me and it's not likely my fellow bloggers. It’s not breast cancer survivors or their family and friends who’ve watched a loved one suffer from breast cancer. I don’t need to be reminded to feel my boobies. In fact, I have a team of people regularly feeling my boobies at the UCLA Medical Center. The audience for these organizations, at the level at which they, by their own mission statements, function is women, particularly young women, who aren’t regularly getting mammograms and maybe aren’t regularly doing self exams and maybe don’t even think about it much precisely because breast cancer has not yet touched their lives. There is a larger discussion of breast cancer and the need for a cure, of course. But these agencies aren’t purporting to cover that ground. They are simply trying to spread the word that early detection is important. It’s not the be all to end all in breast cancer and they don’t claim it is. But it’s still important. So I don’t think we can dismiss their work. A person can choose to spend their money elsewhere, of course, but I don’t think these organizations need to be ridiculed or attacked or even characterized as not worthy of support for the work they are doing. Which leads me to the next line of argument that I disagree with---

2.       That self exams don’t improve survival rates or, phrased differently, that because early detection does not guarantee the disease will not metastasize or that you will survive the disease, it’s not worthy of so much emphasis.  Again, I disagree. Self-exams are extremely important and cannot be over-emphasized. I know this personally. I had a clean mammogram in late July, 2008, and then found a palpable lump myself in November, 2008. I was diagnosed with stage 1c triple-negative breast cancer on January 12, 2009.  If I had simply waited for my next mammogram, my disease would have been greatly advanced and my chances of survival would have been greatly decreased. That's just a simple fact. My cancer went from undetectable to nearly stage 2 in 4 months. Imagine what 8 more months would have done! I have worn the Feel Your Boobies t-shirt. It has opened a lot of discussions with friends and strangers alike. And when I tell my story I very often hear that the person I’m talking to hasn’t ever done self exams, has put off their mammogram or never had one, or thought they were doing pretty good just because they had their annual mammogram. And I’ve always encouraged folks by saying we are our own best defense. Know your breasts; do your self exams.  And the shirt with its approachable slogan worked to open that dialogue and, I think, probably encouraged a few people to pay more attention to their breast health. Now, let me be clear, I do completely understand that there is the very real chance that even though I found my cancer early and received treatment early, I may in fact one day have a recurrence and I may find the disease—despite my early detection and self exam—has metastasized. I get that. But I also get that I have a much, much better chance of that not being the case because I did catch it early. Every single doctor I’ve talked to—and I’ve talked to a lot—has emphasized the better odds from early detection. I’d like to improve my odds as much as possible—it’s why I did chemo (which reduced my odds from 30% to 15% chance of recurrence.) I want every single chance at survival available to me.  Early detection provided me with an improved, though not perfected, chance of survival. So again, early detection and using every means available to us is an important message. I don’t think that because an organization takes on that message they have a moral, legal or ethical duty to also take on funding research for a cure. Feel Your Boobies mission statement is clear. They don’t mislead anyone into thinking they are funding research. If you want to fund research, absolutely, your money should be spent elsewhere. Which leads me to the next point of disagreement--

3.      The argument that "we’ve" moved beyond the stage where awareness should be the goal, such that research and finding a cure is the only or at least more worthy goal and that only organizations that fund or conduct research should be supported.  This I bristle at for several reasons. First of course because I spend a lot of time and energy fundraising for an organization that has a cute “pink” name (um, and I named it) and does not give a dime to research efforts (nor do we pretend to). The Pink Ribbon Place funds mammograms for un- and under-insured men and women and provides support, counseling, education, wigs, scarves, you name it…to anyone in our two-county area who needs it. Are we saving lives? You bet we are. Are we helping people suffering from this disease? Yes! Is that a worthy cause? Yes! Absolutely. Just as increasing awareness and promoting self-exams isn't going to help a woman today battling metastasized breast cancer, funding research today isn’t going to do one whit of good to the woman who finds a lump in her breast today and has no insurance or doesn’t know about mammograms or can’t get to a doctor or doesn’t know where to turn.  The Pink Ribbon Place will, on the other hand, be able to do some good for both women. Neither the awareness campaigns or the research campaigns can stand alone. They are both important! The “we’ve moved beyond awareness as a goal” bothers me as well. Because there’s a lot of privilege in that statement. “We” (and I include myself in that) who have insurance, have education, have knowledge of breast cancer and mammograms and self-exams can easily make that statement—yes, we’re aware, stop bugging me, let’s focus on a cure. But this overlooks the folks from different cultures, different socio-economic segments and differing backgrounds who aren’t, in fact, even in this day and age, aware of the need for mammograms, the need for self-exam or the fact that there are 26 different kinds of breast cancer and that there have been major advances in treatment. There are still people who fear doctors, who never get exams, who find self-exams shameful. Many, many people are still frightened horribly by the thought of breast cancer and assume that it always means radical bi-lateral mastectomy, chemo and certain death. And that simply isn’t true. It’s never fun, it’s never easy, but it also isn’t certain death. It isn’t even certain mastectomy or chemotherapy. That message isn’t out there yet.  I personally don’t want to see people operating from a place of fear—and that’s the risk of what  the heavy emphasis on the “reality” of breast cancer” can do. I want to see people empowered to feel they can do something about this—or at least give it their best shot. And if they need to be eased into the message with light-hearted campaigns, so be it. I don’t think FYB or Save the Ta-Ta’s or Save 2^nd Base are in any way trivializing or making light of breast cancer. They are making light of self-exams. Sort of saying—it’s not that big of a deal to do a self-exam, so remember to do it. I just don’t see the harm in this. There’s room for both goals—continued awareness and the fight for a cure. Folks should of course be informed of what an organization stands for and where the money is spent, and make their decisions accordingly. I have no issue with that. If you think research is the best use of your funds--by all means, donate to research! If you just like the t-shirts, have at it. And if you want to support an organization like The Pink Ribbon Place that provides both awareness and direct services, but no research...well, here's a link: The Pink Ribbon Place. ;-) I find it all worthwhile. I've bought the t-shirts, I've donated and fundraised for the Pink Ribbon Place, I've sent money to the American Cancer Society, I've participated in two research studies for the Army of Women, I participated in a research study the night before my lumpectomy. I've done that because....I think it's ALL important.

Okay, Wow. Well, I didn’t really realize how much I did have to say on this. ( And you poor folks who just wanted the t-shirt…so sorry!) So, I think I’ll do this in two parts. This is enough for now. But I think I still want to discuss the “pink-ness” of the breast cancer movement and I did pull up the Feel Your Boobies 2009 income tax return (they’re a non-profit so it’s public record; and I'm a lawyer, so these things are easy to get) and I’d like to share that—because I think it makes it clear the organization isn’t a sham or just funding the salary of the founder. So stay tuned for part 2…or, you know, just avoid this blog for awhile.