Last night someone asked me if I was OK now. It is a question I get quite frequently since undergoing cancer treatment. My immediate reaction was to say “yes, I’m doing really well” and then try to steer the subject elsewhere but the question stuck in my mind. Am I really OK? What does that really mean?

As October draws to a close, I find myself more emotional and even teary-eyed. I knew this month would be hard as not only would I be bombarded by pink, but it is also the two year anniversary of my my double mastectomy. I was pretty disillusioned with all of the pink awareness campaigning even before my diagnosis. Having October be one of the hardest months of my cancer treatment just added insult to injury. What I didn’t expect was how much I would feel like a part of a larger community and how much I would be affected by all of the things going on in the breast cancer community at large.

I’ve slowly but surely come to terms with all of the things that have happened to me personally over the last two years. I know I will continue to recover from cancer treatment. I’ve gotten used to my new physique. I take my tamoxifen every night before I go to bed. I follow up with my doctors on schedule. I know that there is a chance of recurrence at some point down the line but I don’t worry about it. Overall I feel like I’m doing pretty well and continuing to improve. I really am OK with where I am personally.

What makes my heart ache and brings me to tears is how many people we are still losing to this disease. Before my own diagnosis I don’t think I even knew the statistics and I definitely didn’t know anyone personally with metastatic breast cancer (MBC). I was disgusted by the way breast cancer was being used as a marketing tool to drive sales of pink products and I was shocked to learn how some of the big cancer charities spent donations, but I thought about these things in kind of an abstract way. It wasn’t really personal for me. Now it is very personal. I have lost friends. I have seen the pain in the eyes of a metastatic breast cancer patient when they talk about how Pinktober makes them feel. I have listened to their stories and while I hope it never happens, I know I may one day walk in their shoes.

I’m not OK with the big pink status quo. Somehow in the drive for donation dollars we have created a culture that leaves those most vulnerable in our community out in the cold. A perceptual divide has been created between those with early stage breast cancer and those who have metastatic disease. The idea that early detection saves lives has led to an assumption that those who end up metastatic did something wrong. We have created a culture of “us” vs. “them” in an effort to assuage our fear of our own mortality. “We” hope we will never be “them”. Yet the reality is that 30% of “us” will eventually be “them”. In our zeal to accentuate the positive we have left the very people who should be at the center of our community completely outside our gates.

When I first saw some of the portrait collages circulating under #iamsusan on social media I was reminded of the Newsweek issue early in the AIDS epidemic that featured pictures of some of the first people to die of AIDS. I remember sitting on the floor reading their names, barely able to turn the pages as the tears flowed. So many young men gone way too soon. I had a similar reaction to the #iamsusan campaign. All of those people either living with or already gone from metastatic breast cancer. Then I read a blog post by Beth Caldwell at The Cult Of Perfect Motherhood  comparing the AIDS epidemic with metastatic breast cancer. I hadn’t realized we are losing the same number of people per year as we were losing at the height of the AIDS epidemic. The only difference – then the majority dying were men, now they are women.

The parallels don’t end with the stats. At the time I was reading that article in Newsweek AIDS patients were being treated like pariahs. The overall social stigma for MBC patients isn’t as strong as it was for gay men back in the 80’s but the way they have been treated within the breast cancer community is disturbing. I have heard so many stories of MBC patients being asked to leave support groups because they are “too scary” for the early stage patients. They are often treated as if they did something to deserve their disease because people believe so fully in early detection that they assume anyone with MBC didn’t follow all the rules – they must have skipped their mammograms or not taken the prescribed treatment. They are told things like “you will beat this” or “all you need is a positive attitude” by people who don’t understand that MBC is a terminal diagnosis. They are even accused of faking cancer because they “don’t look a cancer patient”. How have we spent so much money on awareness and education and remained so ignorant?

I have seen changes this year that give me hope. There seems to be at least a little less pink and a little more awareness in the marketplace. MBC advocates are demanding their voices be heard through groups like METUP, funding research through Metavivor and putting names and faces to this disease through campaigns like #iamsusan,  #numbershavenames and Story Half Told. Articles more focused on the reality of breast cancer treatment, pink washing and research funding have been published by major news outlets.  The MBC Project is a groundbreaking approach to research designed to make advances more rapidly than traditional models. A lot of the people driving these positive changes are also living with MBC. They devote their precious time and energy to the cause hoping for a cure in time for themselves, but also hoping to keep the rest of us from ever sharing their experience. I am overwhelmed with gratitude for everything they are doing for all of us.

When someone asks me if I’m OK now I’m sure I will hesitate. The answer isn’t easy. I am no longer ignorant about metastatic breast cancer and I am not OK with everything I have learned. How could I possibly be OK when so many are dying every day?  I am not willing to set that knowledge aside and move on with my life. I’m angry, sad and disillusioned. I’m also hopeful, greatful and inspired. I’m still figuring out where I fit in this movement, but I know somehow I need to contribute more than tears. I have to act. I have to write. October is drawing to a close but in many ways for me it feels like I’m just getting started. The next time someone asks me if I’m OK, I may not say it aloud but I know what I’ll be thinking.

I’m not OK, but I’m OK with that.

If you would like to donate to breast cancer research, I highly recommend Metavivor – the only organization using 100% of donations towards research for a cure for metastatic breast cancer. Another great organization is the Breast Cancer Research Foundation – highly rated by charity watch groups and devoted to breast cancer research including metastatic breast cancer.

I also have to give a shout out to First Descents – an organization devoted to giving young people affected by cancer a life changing adventure. I was lucky enough to go on a kayaking trip with their FD40+ program. They named me Trip and taught me how to be “Out Living It” which for me includes writing about it here.