Recently, in a metastatic breast cancer support group, a member asked that we discuss how each of us were reacting to the annual pink saturation that is coming up in October. The member who brought up the issue expressed some struggles with the fact that so many of the fundraisers involve bras or other sexualized images as well as concerns about how the funds raised were handled. As we discussed different perspectives, it became clear that the group was very polarized about the issue, with some taking extreme positions pro or con.
When my mom had breast cancer more than fifteen (15) years ago, she had an early stage diagnosis and went through the typical treatment of surgery and chemotherapy. Once she “graduated” from treatment and rang the bell, we transitioned as a family into the typical survivorship experience. She walked in a fashion show focused on supporting those who had completed treatment and completed races to raise money for research. As I’ve shared previously, I bought all kinds of pink paraphernalia during the time period between her diagnosis and my own, convinced it was helping someone.
And then came my own Stage IV Metastatic diagnosis in 2017 and I had experiences of my own that shocked me. When I was asked not to come to a mixed support group because I’d scare those with early stage disease, the silences and avoidance of my experiences as a terminal patient when among those with early stage disease, the fear when faced with my perspective, etc. I struggled to understand what it all meant, why I didn’t fit, why labels didn’t resonate with me, why the “rah-rah” attitude at races and other gathering felt like fingernails on a chalkboard or an ice pick down my spine.
Here’s the bottom line for me — I value truth telling. I value being told the truth. I value clarity and preciseness, in words and deeds. Anything that avoids the “mark” or excludes experiences troubles me.
And here’s what I learned …
- During the time that funds were being raised under the slogan “for the cure,” less than 20% of those funds went to research, the only endeavor that will find the cure to breast cancer. Of that 20%, arguably less than 10% went to metastatic research. For me, this revelation brought me to the conclusion that many charities, including Komen, have been dishonest and perpetuated a fraud on its donors. I cannot support an organization that is dishonest.
- All that pink merchandise is making the retailer money. Of the funds made off of a cute tie or pin or shirt or whatever, less than 10% OF THE PROFIT is typically donated. While the pennies do add up, the only way to really make a difference is to donate funds directly to worthy organizations. And forgot asking the retailers who the funds are going to, the vast majority have no earthly idea.
- Most of the time fundraisers go to national companies and very little is left locally. Yet another reason to look to local organizations who are investing the funds that are raised towards local research projects or local patients.
- Look at overhead for any non-profit before you donate funds. I’m all for people making a reasonable wage and some jobs are really hard, yet the percentage of funds that are allocated to overhead and salaries before donations reach a needy population is necessary to examine. This information has come to light about a variety of well known and respected organizations in recent years during disasters.
- What the heck is awareness? Don’t get me wrong, we still need to do a lot of education for those who are pre-diagnosis and early in their diagnosis. But general awareness about breast cancer generally just isn’t something I can participate in anymore. I wrote a blog about that last year.
Is this complicated?! Absolutely. There’s no way to know for sure in a lot of situations, but my faith has been tested and I’m just a lot more careful where I spend my time and where I donate funds or ask others to donate.
My other struggle, which I know others share, is that when we talk about breast cancer, I am reminded of all those we’ve lost. Not their breasts, the PEOPLE. Watching contests with decorated bras or the people wearing their bras on the outside of their shirts during a race or the slogans like “save the tatas,” just guts me.
I honestly don’t begrudge anyone their celebrations. Getting through an element of treatment or reaching the end of treatment is something to be celebrated. Everyone needs an outlet, a place to deposit so many feelings. For some, the races are meaningful, the celebrations remind them of being alive, they gain hope by marching arm in arm with others in the same situation.
I get it.
I just can’t celebrate.
Not why I see my friends dying every day.
I can’t bejewel a bra without thinking about how the cancer in my body left my breast.
I can’t string on a boa and beads and dance in the streets when I know I’ll be in the infusion chair again next month.
I can’t celebrate how slow the progress has been on treatments, how rate of death of those of us diagnosed pre-menopausal is going up, not down.
I can’t celebrate, not yet.
With my family, we celebrate milestones. We celebrate my cancerversaries and note how far we’ve come. We mark these things because they are significant. It is so important to do this, to be present and celebrate those things that can be celebrated.
But the time to celebrate in October won’t be timely for me until we aren’t losing over a hundred people every day in the US to metastatic breast cancer.
I value truth telling and I am a truth teller. I value big goals and striving to meet those goals. We all need to work together towards this big goal, that of curing cancer. I just wish we could focus on the people who need help, not making a profit off of the suffering of others. Every day, I cringe a little before opening social media because I worry how many people I know will have died overnight.
And that’s not pink.