There’s a Rant Coming On…

You probably know that there are issues related to the Kohl’s/Komen joint “sell stuff for the cure” campaign. I’ve written about it, as have others. If you don’t know, METAvivor has sought counsel and we will be providing updates as we can.

In the meantime, I’m not the only one who has written about the issue. Fellow blogger Lara Huffman has a piece on her blog, which you can read here: http://getupswinging.com/. Her piece in excellent and has sparked a great discussion. One comment in particular, however, has set me off. It was a comment from a woman named Patti, who is taking some heat over there, so rather than add on, I thought I’d share my response in my own space. 

Patti says:

I don’t get why metastatic “survivors” don’t think they are included in breast cancer awareness month or consider themselves ” survivors.” I personally hate October and am a reformed 3 day walker, but I just don’t understand why those with metastatic disease aren’t supposed to have hope and take offense that they have a day set aside for them. First there are complaints about October in general, which I agree that it is over commercialized and a constant reminder of death ( in my experience), but why complain about the month and then complain not enough days are dedicated to metastatic disease. It makes no sense. But a survivor is technically anyone alive after diagnosis, metastatic or cured. Complaining that to much attention is dedicated to survivors just makes no sense. I personally think that success stories are good for helping moral during tough times. It’s good to know that people actually live after diagnosis, whether it’s living with metastatic disease or getting “cured.” And it’s good to see that after being mutilated by cancer, we can actually get pieced back together and, even with the constant worry of recurrence, swollen arms, infertility, fear of cancer from all the warning labels of anything we ever had to take for cancer, and physical limitations and pain, there is still hope for life.

The irony of this comment is that the naiveté expressed is exactly what Komen has created by marginalizing metastatic patients and projecting happiness and excitement over as the rule.

I followed Komen’s rules. In fact, I did one better! I got my first baseline mammogram at 35. After all, early detection saves lives, doesn’t it?? Not only did I get my mammogram, but as a result I was diagnosed early – Stage II – let’s celebrate. Pink boa and a cosmo anyone? I followed all the treatment rules for young women too: aggressive surgery (bilateral mastectomy), 6 rounds of the roughest chemo they could give me, and 5 years of weight gain and a crushed libido thanks to tamoxifen.

I was one of those who, to borrow a phrase from Patti, lived “…after diagnosis…getting ‘cured’.” I even passed that magical 5-year mark that we delusionally use to measure “success.”

And then it started – two years of watching my tumor marker rise, month by month, with the innate sense that the cancer was there. However, we couldn’t see it lurking in the dark of my bone marrow and so it went untreated.  22 months and eight scans later I was, much to my relief, finally diagnosed with mets. Is that what “survival” looks like to Komen? Nope, their mandate was for me to celebrate with walks and runs and shopping for the cure. My fear, my years of sleepless nights, my cancer doesn’t fit with their mood…

Patti says, “…it’s good to see that after being mutilated by cancer, we can actually get pieced back together and, even with the constant worry of recurrence, swollen arms, infertility, fear of cancer from all the warning labels of anything we ever had to take for cancer, and physical limitations and pain…”

That’s GOOD? Are you KIDDING ME? Set aside those worries, swollen arms, your dream of children or grandchildren, fear as your constant companion, the limitation to your activities, your pain – because you got through early treatment, you should feel good. I’m sorry – but I am too polite to list the rage of curse words I’m thinking right now. Offer that life to any single person untouched by cancer and let me know if they think that’s a “GOOD” way to live…

Here’s what you missed, Patti – that beautiful life you describe – the one of unfilled dreams, aches and pains that never dull – that’s life after early-stage treatment. We still haven’t gotten to the mets patient, have we?

“…I just don’t understand why those with metastatic disease aren’t supposed to have hope and take offense that they have a day set aside for them.”

Really, Patti? MBC patients who walk every waking moment, and plenty of restless dreaming hours as well, are among the most optimistic people I know. We do set aside pain, fear, anxiety, the gnawing sense that our bodies are destroying themselves from the inside. We squeeze life in between doctors appointments and hospital stays. Not only do we take medications for our treatments, but we take medications for the side effect, and it’s decidedly common to take more meds for the additional side effect. We live knowing that there will never be another day without cancer in our lives, or the lives of our loved ones – not one single day. We  live despite our worries  about when this treatment will stop working and how our bodies will tolerate the next one. But we remain engaged, living daily, loving our families, learning all we can about our disease and the cutting-edge therapies to keep it in check, advocating for ourselves and others, getting involved in the research, joining clinical trials (often to help only those with early-stage diease) and fighting against the injustices organizations like Komen wage against us. We also seek to educate people like you. But of course, we should be happy, the “survivors” might get upset.

Maybe, just maybe, it’s time for the rest of the pink world to stop telling us to buck up and HEAR why we reap the joy of every moment. Patti, please tell your friends…

P.S. This isn’t about Komen, or any other particular organization or group. This is about the world of pink in which we’ve come to live. While perhaps unintended, the wrong that in squelching then voices of nearly 1 in 3 of those living with breast cancer. And when 1 in 3 people are allocated a single day, it’s hard not to think we don’t want to be heard from. The wrong must be righted.