Our Cancer, Ourselves

Forty years ago this month, Our Bodies, Ourselves hit bookstores. The 40th anniversary edition recently came out, and last night NBC Nightly News interviewed women ranging from author and screenwriter Nora Ephron to famed breast surgeon, author and Army of Women founder Dr. Susan Love.

If you weren’t around then, it’s hard to understand just how groundbreaking this book was. We were just starting to talk openly about things like reproductive health and birth control, and it provided a road map. It’s been published in 25 languages, and Time magazine named it one of the most influential 100 non-fiction books. An updated 40th anniversary edition was recently published (and it’s available at a 70 percent discount to health clinics and non-profits.)

I was 15 when the original version was published. I never thought it would be around for 40 years, or that I would be purchasing a copy of Our Bodies, Ourselves: Menopause to try to make sense of that next female frontier.

The book providing the first real road map for breast cancer was the still-excellent First, You Cry by Betty Rollin, which came out five years later. Although the fall crop of breast cancer books has become as perennial as pumpkin harvests, I think First, You Cry is still the gold standard. Not only is it an unflinching look at the roller coaster of emotions she experienced, it also provides a look into how much medicine has changed. I spent the night in a short-stay unit after my mastectomy; she was in the hospital for a week after hers.

When I look back on what’s changed, I’m glad women’s health issues and cancer are no longer in the shadows. I’m glad we educate ourselves and share our stories with each other and stand up for ourselves as patients and as women. I’m grateful for social media and the community I’ve become a part of.

But when I look at how our society has changed in 40 years, it seems that while there is no shortage of people who are willing to talk, fewer are willing to really listen. A lot of today’s political discourse seems to have hardened into ideology. I see a bit of that in some health discussions too, mainly around patient empowerment. And I find it interesting that patient empowerment is often equated with feminism. At this stage of my life, I’ve become wary of “isms.”

Would I go back to the way things were then? Absolutely not. I’d just like to see a shift to more listening and respectful disagreement in our public discourse.

The Kindness of Strangers

“No act of kindness, however small, is ever wasted.” -Aesop

I see my oncologist for my twice-yearly checkup tomorrow, and while my visits have been blissfully mundane over the last three years, this time I actually have a list of questions and a couple of concerns over the lab results from my latest physical. It’s probably nothing, but once you’ve had cancer you can’t help but wonder which “nothing” is actually the edge of trouble’s long shadow. My family doctor sees no cause for alarm, although she promised to keep an eye on things and outlined a course of action that sounds reasonable. I agree, but told her I’m also going to share my lab work with and relay our plan to my oncologist.

I serve on the citizens’ advisory committee of our community cancer clinical trials program, and I’ve come to know its program director, an oncology nurse. We were e-mailing each other today about an event we’re having next month, and she wished me well on my appointment. When I shared my fears with her, she told me they’re normal for anyone who’s been through cancer. She said telling my oncologist is a good move. Then she told me to enjoy my upcoming vacation in Napa, get some sun on my face and relax with a nice glass of wine because I deserve it.

Her e-mail made me flash back to the first e-mail I ever got from her. I was fresh from a horrible consult with an oncologist who recommended a mastectomy after 10 minutes with me. Oh, and I should really consider an MRI, in case I needed a bilateral. Needless to say, I was freaked out.

I was so high on the freak-o-meter that a friend of mine asked Mary Beth, the program director, to get in touch with me. He had kept recommending the oncologist who is now my doctor, and I kept saying no until this awful consult. My oncologist is a principal investigator with the program Mary Beth heads up and she knows him well. She e-mailed me to let me know my soon-to-be oncologist was both smart and nice. She also told me that having cancer in both breasts is extremely rare. This wonderful woman talked me down, and she didn’t even know me. Her kindness radiated through that e-mail.

Mary Beth wasn’t my only encounter with kindness–far from it. I’ve talked before about the kind woman who rescued me in the waiting room the day I had my first-ever surgery. There was the young woman with the insurance company who helped me sort through a billing issue, then paused and said, “How are you?” like she really meant it, and shared her own family history. There was my beyond-awesome surgeon’s equally beyond-awesome receptionist. My journey had many such moments of kindness and I’m sure yours did too.

Today, I see this kindness in social media as well. I see it in the #bcsm tweetchat and the women who worry about each other if they’re offline for too long. It’s nice to know that kindness is alive and well. I believe it’s true that no act of kindness is ever wasted. And you never know how long your kind gesture will stay with someone. It might be for far longer than you think.

Tangled Up In Pink

I’ve always loved fall, particularly October, even though in recent years it’s become tinged with sadness. My mom died on October 1, 2003, and my dad’s birthday was October 13; this year, he would have been 80. But those bittersweet feelings seem in perfect keeping with fall. The glory of the brilliant gold and red leaves lies in knowing they can’t last. 

But now, thanks to the pink retail holiday that breast cancer has become, at least in the United States, the black cat and orange pumpkin of Halloween, the crisp blue sky and gold leaves of a perfect fall day, have all been crowded out by pink.

The crowding isn’t just visual. When you blog about breast cancer, October is a land mine just waiting to be stepped on. Do you jump on the pink bandwagon and blog about breast cancer awareness and support, as if it’s the one time of year you can talk about it? Or you resist, lamenting the avalanche of pink products and specials and events that have hijacked the month?

I knew this had become an issue when another blogger asked me if I had any big plans for October blog posts. The fact we were even having a discussion about this made me realize just how much Pinktober has gotten under our collective skin. LIke the pink ribbon itself, it’s a loaded symbol.

The truth is, I don’t have that much to say about Pinktober other than I’m already tired of it and don’t like feeling (self-induced) pressure to write about it. Instead, I’m going to give you a recommended reading list of the best things I’ve read so far.

I mentioned that the pink onslaught seems to be most intense in the United States. Read this wonderful post, “Where There Is No Pink Pandemic,” by Philippa Ramsden at Feisty Blue Gecko, to see how differently breast cancer is viewed in the rest of the world.

One of the best posts I’ve read about what a loaded symbol the pink ribbon has become comes from Jody Schoger at the wonderful Women with Cancer. In her most recent post, Upending Pink, she explains why October has made her uneasy for a long time, and includes some great links to recent news coverage of all things pink. But what touched me even more was her previous post, Left Behind, in which she talked about how the politics of the pink ribbon intruded on something as private as a funeral. (I’ve had similar mixed feelings when accosted by a basket of pink ribbons at a funeral, as I’m sure many of us have.)

One of the best and most consistent critics of pink ribbon culture is Gayle Sulik, who wrote the book Pink Ribbon Blues. She will be blogging 30 Days of Breast Cancer Awareness and her first installment, the Inspirational vs. the Actual, looks great.

Rachel May at the Cancer Culture Chronicles sums up what’s wrong with the typical approach to awareness in Breast Cancer Awareness Jersey Shore Style! All outcomes are good, buying a pink pashmina passes for awareness, and there is nothing remotely related to her experience with metastatic cancer. Apparently, her particular “brand” of cancer is a tough sell. It’s a bit problematic figuring out which shade of lipstick works best with thrush.  

Debbie Woodbury at Where We Go Now used to like pink, and wants us to reclaim its power this October.

You’ll find plenty of thought-provoking reads in these and many other excellent blogs. And here’s wishing all of us a fast month. -Jackie Fox