At the Democratic National Convention last week, Chairwoman Debbie Wasserman Schultz talked about her experience with breast cancer.
“I know what it’s like to sit in that waiting room wondering how many more anniversaries you’ll get with your husband. How many more birthdays you’ll celebrate with your kids,” she said. “I don’t care how strong a woman you are, that moment is terrifying.”
She’s right. That moment is terrifying and you can’t imagine it until you go through it. And I certainly had those feelings when I first found out about this in July. But I pulled myself together and was determined to work through it and come out on the other side. I looked at the calendar (for the purposes of this essay) and realized I’ve been living with this diagnosis for fifty one days. It feels like a bloody eternity. It doesn’t matter that I had this squatter in my breast before I knew it, it’s the knowledge that scares the crap out of you. Never was the old maxim ever more true: Ignorance is bliss.
Even with the diagnosis in hand, I was still ignorant that I was Stage IV. And knowing this, even with assurances to the contrary, I see that clock countdown really fast and wonder how to come to terms with this. I was reading a fellow blogger’s post today that captures this feeling really well. In “Living in an Undefined Space,” the author of Telling Knots, explores how living with this diagnosis results in a vulnerability that is hard to describe. Indeed, “undefined space” may be the best way to explain it. And, to further complicate it, the inside of that undefined space is made further amorphous depending on where you are in the process.
I am new to the game, so to speak, and have just started my treatment to manage the disease; and my quality of life has taken a direct hit. The fatigue that builds through the week after just two and a half hours of teaching on Thursday evenings has become debilitating. I’ll have to begin working four days a week just so that I can meet my professional responsibilities. Joint pain in my right shoulder and elbow are keeping me from lifting–that’s affecting my housework and my professional work too. Lower back pain is making it harder to do laundry and clean the cat box. Fatigue has affected my hobbies. I love the rush of air you get when the subway comes barreling by the platform–but now I stand close to the wall less these sudden feelings of vertigo make me take a dive onto the tracks.
“It feels like self-indulgent drama-queenery to talk about my feelings about the cancer and about dying. I feel like a jerk when I have to cancel arrangements or can’t talk on the phone because I am not well enough. I feel like a selfish, entitled idiot when I find myself crying for no apparent reason. So many people are suffering more than you, I tell myself. Lose the drama. You don’t have it bad in the least! —Telling Knots
I was so saddened when I learned that one of my good friends–who is dealing with two friends with breast cancer (we were diagnosed a day apart)–tempered sharing with me her stories of a good summer and good times because of our crummy news. And I get it, that’s what we do when we have friends who are hurting. We want to put ourselves second so that we aren’t insensitive to the gravity of it all. And we, with the disease, want to put ourselves second because we don’t want our friends to hurt. It’s all part of this undefined space–how we act, how others act toward us. None of us know what to do. It’s not like there’s a manual.
In this same space is the whole pink ribbon madness. I have read the words of many women who are frustrated that in the upcoming Pinktober “festivities,” women with metastatic breast cancer are hardly mentioned. Most organizations are focused on prevention and five year survival rates; you make it past those five years and you’re still part of the Pink Ribbon Club. However, if you develop metastatic breast cancer later (or are diagnosed with it early on) you can still join, you just have to come in the back door. All that talk about death and dying might unravel the fundraising process if people see you struggling and they can’t memorialize a fallen martyr they don’t have to actually face. We’re more valuable dead than alive to the “cause” (whatever the hell that is anymore). Metastatic breast cancer advocates launched a difficult effort to get one day in October designated as Metastatic Breast Cancer Awareness Day. I don’t have to tell you that the irony (and, I believe, inappropriateness) of this falling on the 13th of the month is not lost on me.
It is a very odd existence. One so alien and surreal–truly undefined–it is not surprising that women with Stage IV are virtually ignored in the pink ribbon zeitgeist. After all, how do you market a nightmare?