As I write this, Pinktober is creeping close. I used to love October with the feel of fall in the air. It’s my birthday month (and my daughter’s) and it always felt like the trees were showing off just for us, in celebration. Then I was diagnosed with inflammatory breast cancer (IBC) and October was forever changed.
That first October, after my IBC diagnosis early in 1994, I was finishing radiation treatments and planning gallbladder surgery that had been put on hold. For the most part, I was oblivious to any breast cancer awareness activities, if there were any. However, I was certainly aware of breast cancer after enduring 8 months of intense treatment. Plus, my family and friends were now more aware than they’d been before, at least I think they were. At that time cancer wasn’t a regular media topic like it is today. I knew a few people who’d had breast cancer but my exposure to the disease had been limited. Like most people, I didn’t think I was at risk at 40 years old and no family history. I was wrong!
Over the years, as I became more and more active in breast cancer advocacy, I was given opportunities to share my cancer experience. Often these events are in October and people want a “feel good” story to encourage those in attendance. Since I’m usually representing the Inflammatory Breast Cancer Research Foundation when I speak, I make sure people understand that breast cancer isn’t ‘pink and pretty’. There’s a reason our organization uses red, white, and black in our logo. IBC is a nasty disease. One third of those diagnosed with IBC have distant metastasis from the start and another one third develop metastasis during the course of their disease. Also, IBC accounts for a very high percentage of the annual breast cancer deaths. Breast cancer education/awareness isn’t a “feel good” story, it should be about the truth of a disease that still steals over 41,000 lives annually. When we talk about breast cancer, we need to tell the whole story.
I love what Dr. Susan Love shared with the above picture, “It is important to remember as the Pink Fog settles on the land that the breast cancer world includes everyone from those carrying a mutation for risk to those with metastatic disease. It isn’t a contest but rather a club, that no one really wanted to join! Let’s be inclusive and celebrate all the members!” (wise words, Sue!)
While we’re on the subject of Pinktober, I’d be remiss if I didn’t mention pink marketing. Over the years we’ve been bombarded with pink products promising “a portion of the sales” will go to “breast cancer research”. Seldom it is clear how much money will be given and who will receive it. This is great for corporations who tug on our hearts to open our wallets. They get the corporate tax benefit and PR while we buy yet another thing we didn’t really need. Plus, who knows if the money ever gets to the designated charity? I remember having this discussion with my mother. After my diagnosis of IBC, she became the prime target of pink marketing. She thought her purchases were helping me and others dealing with breast cancer. I finally told her that if she wanted a pink mixer, I’d spray paint hers pink and she could make the donation to Inflammatory Breast Cancer Research Foundation so she’d get the tax benefit and good feeling! That interaction got through to her and she began telling her friends the same thing, stressing the importance of knowing more about who you’re donating to and how they use those funds. She’d never looked into the business practices of non-profits, just donated to those she thought were “doing good things”. She learned about Network for Good, Guidestar and other places containing info about non-profit groups and how they spend their money. (*It’s important to note that non-profits with smaller budgets don’t qualify for Network for Good, so don’t despair if you don’t find them there). Before you purchase that item or make a donation, find out where the money goes and make an informed choice.
One last thing….as we move into Pinktober and social media is full of breast cancer games and other drivel, make the decision to DO something that will benefit those dealing with the disease. Wearing a breast cancer t-shirt, ‘liking’ or ‘sharing’ something on social media, or playing some Facebook game doesn’t make a real difference. Offer to drive someone to chemo, provide a meal or restaurant gift card, set up childcare or housecleaning, or just be there to provide a listening ear to someone in the midst of the daily cancer struggle. For some, there is a light at the end of the treatment tunnel, for those with metastatic disease it’s “treat, scan, repeat” as long as they’re alive. Metastatic patients may not ‘look sick’ but that doesn’t mean they don’t need your help and support. Offer…don’t just ask “what can I do”, most aren’t good about asking for help. The ball is in your court.
This October, stop the awareness ‘pinkwashing’ and make a difference by DOING something!