My Awareness Wish List

I would have written a blog post a few weeks ago, at the beginning of October, but I was just too tired from work. Since then, I’ve wanted several times to write, but I was overwhelmed by a surfeit of potential topics. Every time I thought I knew what I’d focus on, some fresh muck would bubble up from the pink morass.

Right now, I’m sitting here, finally on a twelve-day vacation from work, listening not by design but by serendipity to a radio discussion on NPR about the now-infamous and much-discussed 2010 US Preventive Services Task Force Recommendations for Screening Mammography, that were published last November. It is taking place on the radio show, “Talk of the Nation,” and it is, perhaps predictably, a less strident, more reasoned discussion than some of the initial discussions that took place when the badly-written, poorly-explained guidelines were first published. Less then a year is not enough time for a true reading of the effect of the guidelines, but on the whole, it seems that so far it has been arguably anti-climactic.But in the meantime, I’m glad to hear a few folks still expressing the concerns I had about them from the start, such as: (1) comparing the relative costs to the potential benefits of regular screening mammography looks very different when you are a public-health scientist evaluating statistical data than it does when you are a 37-year-old woman whose mother died of the breast cancer she contracted at age 50, whose sister was also diagnosed with breast cancer, but who can’t find a doctor to order her a mammogram because she’s “too young” [this story was shared by a woman who called in to the show]; and (2) mammograms aren’t perfect anyway and we need better screening tools in the first place. Not to mention better and less byzantine treatment. And fewer deaths. Not to mention a cure.

Same Old Shit

Meanwhile, two years ago this October, I finished my so-called “active” treatment. I still don’t feel very well. I don’t feel like my former self and I wonder if I’ll ever get certain parts of that self back again. Whoever I am now, I still have to defend myself to people who don’t understand why I am not “all better.” I am closer to accepting that there is no “all better,” but I still find it exhausting to have to explain it to my employer, my doctors, my colleagues and even to my understanding and loving friends.

I do feel better than I did a year ago. A year ago, I was dragging my butt to the U-Conn Health Center to participate in a study on cancer-related fatigue, and getting a chest CT scan which showed that I did indeed have radiation scarring to the pleural covering of my right lung, this after enduring two months of shortness of breath that turned out to be asthma. A year ago, I was slashing my work hours and taking drugs to help me concentrate when I did go to work, and on my days off, I was spending most of my time asleep because I felt like a dishrag. So, yeah, compared to that, I feel fantastic. Not.

Pink Fatigue

So, here we are, and it’s October, and we are once again bombarded with pinkness, and we survivors are by no means in agreement about how we regard the usefulness of all this pinkness, and I feel like I could write a book about that alone. As it happens, a few other folks have already done so.

One of them is Gayle Sulik, “a medical sociologist whose work focuses on the personal and social impact of illness on individuals, families, and communities.” In her book, Pink Ribbon Blues, she addresses a few conundrums associated with the ubiquitous pink ribbon. In his New York Times article, “Pink Ribbon Fatigue,” published earlier this week, Dr. Barron Lerner describes Sulik’s three-fold thesis that National Breast Cancer Awareness Month may only serve as yet another vehicle by which to drown the real and complex feelings of breast cancer survivors in a tsunami of pink positivity, while it reinforces gender stereotypes, and fosters a veritable industry of cause-related marketing that has become increasingly profitable to many of the corporate co-sponsors out there who might arguably represent a conflict of interest for their fund-raising partners. Meanwhile, a lot of folks are still not even aware of the fact that Breast Cancer Awareness Month was founded and continues to be sponsored by AstraZeneca [see my previous post, Pinksploitation], the pharmaceutical company that makes two widely-prescribed drugs in the breast-cancer-fighting arsenal — Tamoxifen and Arimidex — and certainly qualifies in my book as having a less than altruistic interest in breast cancer.

Getting A Few Things Off My Chest

So, excuse me if I’m feeling a little crabby. October used to be a month I loved purely for the golden, buttery quality of the light, angling across the dazzling autumn landscape. I did not have to “think pink” if I didn’t want to. Now, I’m ‘aware’ of breast cancer in some fashion all the time. Frankly, I could use a little less breast cancer awareness. Instead, I’m sitting here waiting for a phone call to reschedule the colonoscopy I had to postpone after my cancer diagnosis because I was, well, kinda busy. And which I feel ambivalent about getting at all, but which I really ought to get, because my maternal cousin Patrice died of colon cancer about five years ago, and colon cancer has a genetic and statistical relationship to breast cancer. Not to mention ovarian cancer, another genetically-related cancer, which my maternal aunt had (and survived). So, I’m also waiting for a phone call to schedule a visit with a cancer genetic counselor because I don’t know whether I should be concerned about BRCA genes or not, since I haven’t been tested for them, and if I do get tested for them and I have them, I don’t know what the hell I would do about it anyway.

Until I figure that out, however, here, in no particular order, is my personal wish list for the month of October.

Take Back The Pink — The Amazon’s Breast Cancer Awareness Wish List:

  1. A cure for breast cancer would be nice.
  2. A cure for ALL cancers would be nice.
  3. Less invasive, less costly, more accurate screening and diagnostic tools to detect breast cancer would be very nice.
  4. Since a lot of us do, thank heaven, survive, how about more of these fundraising dollars going to help us pay our bills now that many of us can no longer work full-time or even part-time, if at all?
  5. How about someone to help us clean our houses or mow our lawns for free after we’re all done with active treatment but still feel like dog crap? I don’t need make-up. I need a cook, a housekeeper and a handyman.
  6. There needs to be a way to ensure that ALL cancer patients get enough information to make informed choices and informed consent about their cancer treatment. From the get-go. Between third-party insurers and overbooked oncologists and cancer treatment centers who are trying to see enough patients to pay for expensive equipment, the Hypocratic Oath all by itself just ain’t cutting it anymore.
  7. This is one of those “man-on-the-moon” statements; if we can put a man on the moon, if we can make computers smaller than a pack of cigarettes that do more than room-sized computers did forty years ago, how come we are still only offering the slash/burn/poison protocol for cancer treatment? Can we come up with something a little more, well, subtle? Something that destroys the cancer without destroying your ability to live a somewhat normal life afterward?
  8. And if we can’t come up with more finely-tuned cancer treatment, then can we please come up with more awareness in the medical community of the long-term and late-term effects of the slash/burn/poison protocol, and more effective ways to treat them?
  9. Do we really need product-related promotions to raise money for a cause, any cause? Is that the only way to do it? Really? Well, then could fund-raisers do a little vetting before signing up anybody with a checkbook as a co-sponsor? At the very least, I don’t think it’s asking too much to avoid getting in bed with companies that manufacture carcinogenic products, for example, when you’re raising money for cancer.
  10. And, on your websites, could all of you fundraisers please include a clearly-marked tab, leading to a clearly and honestly written financial statement about how the money is spent? All of it? And could we see fewer event photos and more photos of the programs you fund? I want to see photos of actual women being driven in actual cars to actual mammography centers. Or whatever other community projects you fund. I know you may think it’s much sexier to wallpaper your websites with heart-warming photos of happy people attending pink fundraisers, but I would like to see some proof that you are actually helping with the nitty-gritty, that your volunteers are indeed helping vacuum the home of a woman getting chemo, or driving someone to radiation, or doing some other unglamorous, unpretty, unpink task that desperately needs doing. Personally, I’d be more likely to donate or volunteer my time. But, hey, that’s just me.

Earlier this week, a lovely lady and sistah survivor who volunteers tirelessly for Susan G. Komen opined that she didn’t care how many useless pink tchotches surrounded us as long as it helped prevent a woman from dying of breast cancer. And that we survivors tended to be too serious about the whole pink thing anyway. I don’t know how anyone could visit this blog and think I or my readers were too serious about the whole thing. Au contraire, ma cherie! I am the first person to laud the effectiveness of humor in getting the message out! And so, despite the fact that we need better tools than mere mammograms, and despite the lack of informed perspective too often demonstrated by Susan G. Komen Foundation, I will give them credit for putting out this comical video to get the word out about their program to help women without funds or adequate insurance get mammograms. I have no doubt that Lady GaGa herself would approve.

Hey! What I’m talking about, sistahs!



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This entry was written by Kathi, posted on Thursday, October 14, 2010 at 07:10 pm, filed under Attitude, Diagnosis, Recurrence, Screening, Fighting the Pink Peril, Health & Healthcare and tagged , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

4 Responses to “My Awareness Wish List”

  1. I just found your blog and I have to say you summed up breast cancer awareness month beautifully. I’d like to add one aspect to your list: how about more focus on supporting those with breast cancer through their journey during and equally important…after treatment. Your points about the lack of understanding are so common but it’s a side of cancer that no one talks about. Right now the Cancer Support Community is looking into this issue through studies such as the Breast Cancer Registry which asks a few questions to gain better insights into areas of unmet needs. To learn more and join please go to http://www.breastcancerregistry.org. Thanks! I look forward to reading your future posts.

  2. Lauren, thanks so much for your comments. I’m going to visit your site as soon as I can. I feel very strongly about survivorship issues & a lot of my posts relate to those issues one way or another. Let’s keep in touch.

  3. Lauren, I discovered that I am already registered with the M.A.P. project, as it turns out. So, I did add a link here on my blogroll.

  4. Kathi, You are a gifted, artistic, writer. Always make me laugh, learn, and investigate. Love the Lady Gaga for Tata. Love your list. I’m going to my Oncologist tomorrow, and was feeling a bit like a wet noodle about the visit. After reading your inspiring words, I feel like a droopy plant that was sprinkled with water, plant food, and sunshine!!!
    Thank you, Friend, Sistah, Accidental Amazon~ you rule!
    Love,
    Indi :o)

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