It’s Not A Party

My email is flooded with emails from all sorts of groups wanting me to come to, support, or post their Breast Cancer Awareness event. Facebook and Twitter are awash in pink parties. “Come celebrate with us,” “it’s a party!” Lots of them seem like they’d be fun.

So what’s the problem? Shouldn’t I be happy that so many events are highlighting my disease?

The problem is that breast cancer – no cancer – is a party. It is not a celebration. It’s a devastating disease that, if it doesn’t kill us, leaves our bodies maimed and minds forever scarred. It is not the “good” cancer. It is not a simple procedure to put behind us. It is not a cold that we get and get over.

This is especially true for those with metastatic breast cancer (MBC). We don’t die from some cancer cells in our breast tissue; we die when cancer spreads to other organs – when it metastasizes. It’s still breast cancer, it’s just breast cancer that lives in lungs/brains/livers/etc. There is no cure. We actually know very little about MBC. We know that around 30% of early stage breast cancers will metastasize, but we don’t know which ones or why. Unfortunately, of all the money raised at all of these parties and events, only about 2% goes toward research into metastatic disease. (If you are interested in changing that, I suggest you visit www.METAvivor.org)

Today, Oct. 13, is Metastatic Breast Cancer Awareness Day. Today. One day. For a whole lot of deaths from an incurable cancer. One day. Today.

This is why many people with MBC feel left out and ignored. They are not the cancer success stories that people like to hear. They are not the stories of triumph trumpeted by feel-good breast cancer awareness campaigns. They are not filled with hope. They know that “cure” will never exist for them.

I realize that most of those ads and events are just trying to reach out and get noticed. Many of them are trying to appeal to a younger audience as awareness of breast cancer as a disease of young women has grown. Most of the races/walks/rides want to emphasize hope.

And hope is a good thing. It’s not the only thing, but it is good. Especially to the newly-diagnosed. I was reminded of how important it is earlier this week in an online discussion of the proliferation of PINK (the #BCSM Tweetchat, Mondays, 9pm EST, Twitter). Amidst the complaining about the commercialization and exploitation of the pink ribbon for profit, a newly diagnosed woman with an upcoming surgery spoke up. She appreciated the pink ribbons – the NFL, the hats, the gloves – they made her feel supported and hopeful. And then I remembered how much it meant to me to see someone wearing a T-shirt from a breast cancer walk. I remember how power and hope is visible in the faces of the women walking or being wheeled. I remember the tears welling up in my eyes. This is not cynical. This is not exploitation.

But isn’t there a way to do this without alienating a large swath of survivors? Can’t you have events that people will want to come to – yes, even a fun event – that are still mindful of the devastation of this disease? Can’t you be clever without ignoring the realities of life with breast cancer – and also death with breast cancer? Can’t you offer hope and community without shunning people who’s hope did not save them? (because, after all, hope doesn’t save anyone)

Can’t we all raise awareness – for everyone – and still manage to tell the truth?

My own little piece of truth has been taking place every day on my personal Facebook page (not the Life-Cise FB page). Every day, I have been posting a name of someone I know personally who has had breast cancer. Just a name. (just a first name) I also posted a note at the beginning of the month about what I was doing. I want people to remember that all the pink ribbons, all the parties, all the T-shirts are about women (and men) – people we all know. It’s my own little way of reminding people of the true faces of breast cancer.

And so far, every name has been someone who has died. Sadly, I’ve had no trouble filling up the days with memories of friends who are gone.

Today, Oct. 13, is Metastatic Breast Cancer Awareness Day. Today. One day.

Julie

This entry was posted in breast cancer awareness month, male breast cancer, metastatic breast cancer, metastatic breast cancer awareness day, METAvivor. Bookmark the permalink.

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