Saturday, October 16, 2010

Guest Post: Pinktober from a Teal Point of View

I was never the popular girl back in high school, with designer jeans and perfectly ironed hair.   I was the quiet reader, always on the outside, and that was fine by me.  So, I found it ironic that I got the popular cancer, with its branded line and stylish logo.  In my mind, I'm still sitting under the tree with the other uncool girls, watching the pink parade go by.   My heart lies with the regular kids, and so I thought during Pink October, it might be interesting to hear from a woman with Ovarian Cancer and what she feels about being on the outside during the October festivities.  One of my all-time favorite cancer bloggers is Sarah, The Carcinista, and here is what she has to say:

Pinktober from a Teal Point of View

October has become the month that strikes fear in the hearts of many. Not just because it’s the time of year we have to start paying for heat again, but because of the spectacular and pervasive marketing efforts of the Susan G. Komen Foundation and thousands of copycat hangers-on digging for your sympathy dollars.

And I’ll admit this right off the bat: I’m jealous. I’ve been fighting ovarian cancer for four and a half years (started Stage IIIc but now I’m Stage IV), and I’m starting to think that despite the best efforts of dozens of industry-leading researchers and doctors at one of the top cancer facilities in the country, I’m not going to win.

National Ovarian Cancer Awareness Month is September. Every year. Did you know that? Do you know that teal is the color of t-shirts, silicone bracelets, and ribbon pins worn by those observing Ovarian Cancer Awareness Month? If you did, you’re in the minority. Ovarian cancer is the ugly stepchild of women’s cancers: it’s not in a body part that’s sexy, like boobs; it’s not easy to detect, like feeling a lump, and it’s damn hard to treat, like 65% fail rate.

That’s right – if ovarian cancer is found in the early stages, when the tumors are the size of peppercorns, it is nearly completely treatable. But when it’s found in later stages, with tumors the size of (insert the name of your favorite citrus fruit here), it’s fatal within five years in 65% of women. Not only that, but the majority of cases are found late, the main reason being that the symptoms are so ambiguous and frequently misdiagnosed.

I spend September beating the bushes, blogging about symptoms and awareness, and talking to strangers about my story and how surprisingly common it is, scanning publications for the slightest mention of OC Awareness Month, thanking my lucky stars for Andie McDowell’s PSA on Lifetime, and Kelly Ripa’s campaigns with QVC and Electrolux. My fellow OC patients set up tables at community craft fairs and in church basements, handing out symptom cards and trying to drum up a little recognition for the magnitude of this disease.

It’s a bit like being the opening act for the opening act for U2: no one’s really paying attention – they’re just waiting for the big guns to show up. Because before September is even over, stores are filled with pink merchandise. Magazines fill editorial pages, poignant survivor stories and photo spreads with breast cancer awareness. We’re swept off the surface of the earth by the waves of pink.

It’s not as if ovarian cancer awareness isn’t as important as breast cancer awareness; many of us would argue that it’s more so. While 200,000 American women will be diagnosed with breast cancer in a year, and 40,000 will die from it (a too-high rate of 20%), 21,000 American women will be diagnosed with ovarian cancer, and 13,000 will die from it (a staggering rate of 61%).  And the last time I checked, women with breasts also had ovaries, which become even more at-risk for cancer once they’ve been diagnosed with breast cancer. Do you know what the symptoms are?
  • Persistent abdominal bloating
  • A feeling of fullness or not being able to eat
  • Persistent diarrhea, constipation, or bowel changes
  • Pelvic or abdominal pain
  • Frequent urges to urinate
  • Fatigue


There are ovarian cancer patients who are misdiagnosed for years by doctors who assume their symptoms are IBS, depression, or hypochondria, and prescribe antacids, anti-anxiety meds, or rest, and pat them on their little heads and send them out the door. There are patients who ignore their symptoms for months or years, assuming it’s weight gain, or lack of sleep, or too much fiber. You can’t tell me a little more awareness wouldn’t help.

There’s no “good” cancer: not lymphoma, not melanoma, not DCIS. Cancer is horrible, the treatments are often worse than the disease they are trying to destroy; having to prematurely confront your mortality and the devastating effects it can have on your relationships and your psyche is a punishment no one is evil enough to deserve.  But on any given day as an ovarian cancer patient, with a five-year survival rate of less than 35%, it’s not hard to be jealous of the breast cancer patients with their potential for cure. Which we mostly don’t get. Ever.

So aside from pinkwashing consumer products and Walks For Whomever being pretty lousy ways to drum up funds for research; aside from the ubiquitous ribbons fooling people into thinking they’re doing some good in the “War On Cancer” that’s been failing miserably for forty years; aside from it distracting attention from preventing cancer by forcing corporations and governments to clean up toxic chemicals and environmental hazards, Pinktober overlooks the fact that there are other, deadlier forms of cancer in the world that could use some of the Pink Juggernaut’s P.R. clout and donation dollars.

It’s insane that there’s any competition at all between colors and body parts and the organizations that work to fund research looking for cures. In the absence of the kumbaya/world peace global generosity that clearly isn’t coming any time soon, I just want to point out that sick is sick, all cancer sucks, and to devote an entire month to fighting just one ridiculously unjust medical diagnosis is pretty closed-minded.

For more information on ovarian cancer, its symptoms, and how you can help, visit www.ocna.org or www.ovationsforthecure.org. For more pith and vinegar from me, visit www.carcinista.com.

© 2010 The Carcinista.

18 comments:

  1. September was Thyroid cancer awareness month as well. I have had both. Pinktober is overblown and completely overwhelms all other cancer awareness months.

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  2. You go girl! Carcinista, you are a dynamite writer! Your sister in OVC Stage 4. katrhi

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  3. Carcinista, thank you, thank you. You put all my thoughts into words. I am sick of Pinktober, cancer in general and ovca in particular!

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  4. OH thank you both for writing this! I have Stage IV breast cancer (also mostly ignored by the pink community) and hate being reminded all October long that I flunked out of survivor school...

    That it is all about jumping on a bandwagon for a "sexier" body part is a HUGE amount of it! An excuse to talk about boobies, with very little being done (it seems) to actually research a cure or better treatments. It has gone from Breast Cancer Awareness, to Breast Awareness, to Breast Exploitation and Boobie Awareness (among the general masses anyway).

    I've been shunned by friends for speaking out against the crasser of the slogans, and calling them sexist, and pointing out that they really have nothing to do with curing cancer.

    My main point for commenting is to say that I did repost symptom lists on Facebook in September, and my toenails were teal, in quiet honor.

    Counting the Days to November,
    Shelli

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  5. THANK YOU SHELLI!!!!!!! I'm sorry to have to meet you like this, but thank you so much for your opinion and your solidarity.

    Sarah (The Carcinista)

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  6. As an ovca patient myself, I wouldn't mind the pink-pink-pink explosion IF each of those "pink businesses" was actually pouring $$$$$ into cancer research. There may be some serious donors out there but I'm betting most of those pinkertons contributes pennies...all the while influencing us to buy their pink-wrapped product and leaving us to think they are contributing mega$$$$$.

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  7. Sarah,
    You are amazing. In a gin-and-tonic induced haze last week, I posted a couple of rants on Facebook about the injustice of this Pinkopoly. How you can scarcely turn around anywhere without something pink beseeching you to care about the poor breast cancer ladies. Apparently, I didn't actually post it, as I discovered the next morning. Must have been too much gin. So I am soberly ecstatic at your very measured lecture. Yes, it should not be a competition between which cancer survivors or friends and family can raise the most money or awareness. With smaller numbers diagnosed and smaller still surviving, we OVCA people make a tiny splash while the bloated crowd of pinks make the waters jump like a thousand belly flops.
    I'm glad you said what you did. I'm jealous, too. You would think the Pinks would care a bit more about their Sister Cancers. And it's really hard for me to be too sympathetic to a disease with about a 90 percent cure rate. I still get lots of calls from this or that breast cancer organization and I offer to contribute to their organizaton if they'll contribute to mine. No one has taken me up on that. It has taken me a while to do this, but I no longer donate to breast cancer campaigns. We have enough to do to improve research for ourselves, so that we can get past 5 years. Sarah, I'm sorry you are now Stage IV and even sorrier to hear a certain acceptance from you that you might not win. I hope you do win, not just because we all should and all deserve to, but you have the chutzpah and writing talent and verve to keep pushing the OVCA research. We need you. All my best prayers, Connie

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  8. Some of us "pinks" do care about our sisters with cancer. The vast majority, I would say. It's why I asked Sarah to post, in fact. Many of us feel the same way you do about Pinktober.

    Whitestone, being a breast cancer blogger, I have come into close contact with those who want to promote their own products under the guise of supporting breast cancer research. In fact, at the end of the month I will probably post some of the more egregious ones I have received.

    The fact is, no matter where cancer lands in your body, it's a horrible illness. Breast cancer is not one disease - it's many, with different survival rates and treatments. I don't know much about ovarian/colon/pancreatic/lung cancers but I imagine they are just as complicated. As Sarah said so well, pink October takes away and divides people who are all struggling with a sad disease. I doubt that's what the founder intended - but it is what has happened. Pink October should be about raising funds for CANCER treatment - without any body part attached.

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  9. I was just wondering what symptoms were for OVC. I have 4 of the symptoms listed. If I were not already being scan and poked following a BC diagnosis, I would be in the dark about these symptoms.

    Thank you for posting. BTW, I knew Pinktober had gone too far when after being diagnosed with triple negative bc and the gazillion appts that followed, I decided to "lighten" my mood by "pink" shopping. In the past I've donated money directly, but this year I "pinked" out to take my mind off my having breast cancer - go figure.

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  10. As a uterine cancer survivor, thank you for this.

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  11. Thank you Sarah. Well said. I just purchased a Tshirt that says “Women’s Cancer is not always Pink” feel for the Teal. I hope to have many more of these made up in different colors. I was diagnosed 2 years ago and have not gone in to remission yet and maybe never will. Thank God for Kelly Ripka and a few others that support our cause. I just lost a dear friend to breast cancer and I think all cancers should be equally supported by the ACS. Pancreatic, liver, lung, you name it. Cancer is cancer and I think after this many year’s if you don’t know the signs and symptoms of breast cancer, you must have been living under a rock. I am amazed at the people that not only don’t know the signs and symptoms of ovarian cancer (myself included), but have never even heard of it. This is sad.
    Phyllis
    October 16, 2010 at 9:30 PM

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  12. Also a (former?) nerd, I was stunned to get the "popular cancer". I am drowning in a tsunami of well-intentioned books, booklets, pamphlets, leaflets, info sheets and business cards. If they ever cure BC, a lot of printers will go broke!

    I never got to meet my mother-in-law. She died of OC in 1960. It appalls me that, 50 years later, the detection and cure statistics for OC are still so terrible. And I have had 5 of the 6 symptoms for years. Guess I have to start bugging my oncologists to check me for OC as well.

    What color do you get when you mix pink & teal?

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  13. Shotgun(can I call you that here?):

    I loved this post. I'm another stage 4 pinkie BUT I also don't care for the color. Love this blogs name! When I went through my primary breast cancer ten years ago I was fascinated that because I had *Breast* cancer I got more sympathy. Pathetic! I was tempted to claim stomach, arm, pancreatic, or maybe toenail cancer and see if there would be a difference in sympathy level.
    Sarah/Shotgun: I'm growing out my toenails so I can paint them teal... In any month! Xxxooo. -Kale

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  14. I'm liking the teal toenail idea.

    Maybe all our BC sisters during this pink month should support our OVCA sisters and paint our toenails teal.

    Do that, email the photo to me with your name and your blog (if you have one) and I'll post them here with a link. We can start a viral campaign.

    In act, I am going to update this blog with that idea.

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  15. How about a multi-colored ribbon & campaign to signify and support all cancers - or at least all cancers that are typically limited to women? Last time I checked, men had breasts, but it'd be a miracle if a guy had ovaries & a uterus. If they did, there'd probably be more research & cures for ovarian cancer.

    I'm in an even tinier crowd of unpopular girls: I have granulosa cell ovarian cancer, which is only 5% of ovarian cancers. Pretty much all our treatments are orphans and stepchildren from the various gynecological cancers, breast cancer & even prostrate cancer. Yep, me & Lance Armstrong shared the same chemo - his apparently worked better than mine. I'm on my 3rd recurrence.
    Every cancer sucks; I've got major pink envy because I want to be the girl asked to the dance. I want someone to find a cure for my kind of ovarian cancer. Actually I'd settle for a first date with more targeted research on GCT and other ovarian cancers. I don't begrudge breast cancer survivors their victories; I'd just like to have a chance at one of my own.

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  16. I am a Stage IIIC OC survivor (currently on a trial at NIH) and a Stage 2b BC survivor. But, I am sticking with teal. I remain astonished at how many women who know they are at risk (due to family history) for BC who don't realize that they could therefore also be at risk for OC due to the genetic link.

    I started Teal Toes after discovering that painting my toenails teal sparked conversations about OC, the stats, the symptoms etc...

    Check us out on Facebook or at www.TealToes.org where you can also find a (somewhat updated) list of teal polishes.

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  17. Ladies,

    I found it interesting in researching a bit, that ALL the women's cancers except BC are teal! I say let the October keep its Pink...for Women's Health and Cancer Awareness Month...and all of us who HAVE cancer can switch to teal...far more solidarity in that.

    Now if I can find that Teal Toes on Facebook...

    Shelli G. aka Tiaragurl, from The Dirty Pink Underbelly (I found out yesterday my October blog was chosen as a guest blog on www.beingcancer.net! How cool is that!

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  18. Your post is great! I will be wearing some teal this month & heading to the doc for a checkup.
    I am bookmarking you now.

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