My relationship with the word—and the concept—hope is complicated, like a love/hate thing. For the longest time, during cancer treatment, I hated the word hope. There. I’ve said it.
The reason for the hate is pretty simple: for me, it got tied up with all that Pink and Cancer-is-Positive goo that dripped from the walls of the treatment center. While the small (small-town) infusion room served patients with all cancers, most of the patient artwork on the hallways leading back to the infusion room must’ve been done by breast cancer patients. The framed poetry and artwork had all the familiar Pink signifiers, and “hope” figured prominently. Framed poems with pink squiggles surrounding the words, pink abstract paintings (with detectable words like “hope”, “strength”, and “courage”, of course), pink, pink, PINK. So, like a science experiment in which a subject gets a painful shock each time she encounters something normally considered “good”, I began to react to the word as if experiencing a painful shock. The word to me meant those beatific smiles, bald heads, feather boas and pinked out clothes. And I just did not fit into that oversold image, and never will.
I used to gripe about the word during support group meetings. The passivity of the word, in its verb form, just made me nuts—it still does. I don’t want to sit around “hoping” for scientists to come up with better treatment and a cure for my cancer. I want to push, scream in their faces, demand it—for all the good that would do (none, duh). I don’t want to hope people “get” how the reality of cancer is so different from that smiling Pink image, I want to tell the truth up front—again, for all the good that will do. My militant anti-Pinkness was beginning to form back then, out of my pre-cancer mild annoyance with Pink hype and selling. While I could not grasp and articulate what pissed me off exactly, I just knew something was off. “Hoping” was just not active enough. And I already knew that doing what actions I could do, was supposed to do—the eat right/exercise/don’t drink bundle of individual cancer patient responsibilities so we can later be blamed—were no absolute guarantee against cancer’s threat to me—just a way to make odds slightly better.
Having the noun version of hope is a little trickier. Everyone needs it, should have it. This rant is in no way criticizing or belittling folks who have it. It’s just that my hope has always been tempered with reality and a desire to avoid the delusion I think is harmful in the Pinkification of the cancer story. But here I have to question myself. I went for a mammogram at age 38 because my 48 year old aunt had just been diagnosed. “She’s too young,” I thought then. When my nipple inverted a month later, I told myself that despite the fact that family history meant a higher likelihood of my own cancer, it seemed ridiculous that I would get cancer at the same time, and at my younger age. “What are the odds”, I thought. Or was I hoping? I still don’t know what the odds are in my scenario. Doesn’t matter anyway, because I did have cancer, right then and there, 5 days shy of turning 39 years young. Back then, I did not know my chances were 1 in 233, rather than the ballyhooed 1 in 8. Still, as much as that 1 in 8 is used in fear-mongering marketing tactics, I would think, well, I’ll be 1 of the other 7. Or did I hope it? Does everyone think/hope they’ll be one of the other 7 (or 233)? I’d guess yes. Fear can drive us to mammograms of questionable usefulness, but the whole time we figure we’ll be one of the others, not a “1”, at least, not just yet.
So my reality-laced hope, or hope-laced reality, comes with thinking about odds and likelihoods, and yet I still seem to draw the short straw. Against hope and odds, I was a “1”, not one of the other 232. This fact was and is an effective destroyer of hope for me. To be fair, it is not just in matters of cancer I’ve drawn short straws. There’ve been many times of getting that short straw in other areas of my life that have taught me to hope that things will go the way of the bigger odds—but look out for that unlikelihood off to the side. It can happen, it did happen too many times to me, and I learned that hope is not so useful to me. Preparing for the worst, bracing myself, serve me better.
But I sit here today, waiting to get an MRI that will tell me if my cancer has returned, or if I’ve got a new one. I am utterly helpless, powerless, to do anything about it. The only activity I can engage in is to hope that I’m not joining the smaller number again, in this case the 30% of mets patients. Granted, my brand of hope is not the smiling Pink kind. My brand has a black rock group t-shirt, tattered jeans, black nail polish, greying hair, and a snarl. Because that is who I am—not an effen feather boa in sight.
What else can I do.