Advocacy, Breast cancer as family issue, cause, christmas, Culture of Cancer, Detection, early detection, imperfect test, Invasive Ductal Carcinoma, Memoir, Mother daughter relationship, prevention, Shutterfly, simple mastectomy, waiting
This relatively normal Christmas could have used the enviable scheduling skills of the Breast Patient Navigator. The hustle and bustle of my favorite season has been overshadowed by interminable waiting for results of tests on tumors and saliva. By some miracle, the Christmas tree is up and twinkling in our front window. I even resurrected my camera and, on a 70 degree day, forced our daughter to don a cheery winter coat and pose under a tree in the backyard. The effort and the eye-rolling was worth it, producing a festive image that was duly uploaded to Shutterfly where the nice people there transformed it into a Happy New Year card and, for an additional cost, even mailed it to friends and family, far and near.
Christmas means lots of mail. Along with the greeting cards this year, are thick envelopes from medical imaging companies, the health insurance company, the hospital, and the offices of three busy surgeons. On Christmas Eve, I received a Surgery Scheduling form filled out in in neat handwriting that brought to mind a worksheet completed by a student for extra credit. At the top, next to the date and time, two words jumped off the page. Simple. Mastectomy. On the same line. In the one breath. How could the two coexist? True to form, I headed to google and entered “simple mastectomy” and in a second found it separated by an “or” from “total mastectomy.” Not so simple. My mother agrees.
For 25 years, long-distance phone calls with the woman who knows me best, have required neither effort nor a brave face. Knowing she is on the other end of the line, I easily fall back into the rhythm of the way I used to speak. The colloquialisms of home are comforting and help counter the strange words that fly like rubber bullets from the lips of surgeons. Worse than hearing and seeing them in print, however, is waiting for the complex vocabulary that will invariably be added to this strange new lexicon. Worse yet is figuring out how to respond, without appearing mean or small, to well-intentioned encouragement from people who genuinely care for me. Perhaps as I was, they have been conditioned to a culture where it has been acceptable to settle for emphasizing early detection rather than prevention; finding a cure rather than a cause. They cannot possibly know the silent rage I feel against this breast cancer that has taken up residence in our family, just in time for Christmas. But it feels wrong to say that out loud. So I am learning how to respond, without falling apart, to consolations and encouragements that come daily – ”You’re so strong.” “You’ll be just fine. I just know it.” “Well, if you’re going to get cancer, breast cancer is the one to get.” “At least you caught it early.” “You’re so lucky – new boobs and a tummy tuck!” “God doesn’t give you more than you can handle.” What if I can’t handle it?
I know now what to say when someone assumes I haven’t had a mammogram. I can point out that I showed up dutifully for three. None detected the invasive cancer that has resided within me for perhaps a decade. A decade. Had I known at 38, that it was important to ask about breast density, I would have done so, and perhaps our family would have been spared this “journey.” I can now, with confidence, tell other people that a mammogram is an imperfect test. Sometimes, as I deliver this news, I find myself having to look away, because I cannot bear to watch the shock spread across the faces of women dear to me, women who have placed all their confidence in a negative mammogram. Like me, some of them hadn’t realized or hadn’t ever been told that dense tissue may make cancer more difficult to detect on a mammogram. I don’t know how to respond when people close to me say, “You’re a fighter. You will beat this. Deep down I just know it.” I find myself fearing what they would have said to me if, deep down, they just know I won’t.
This Christmas and next Christmas, what I want someone to tell me is that I’m not going to die soon. That I won’t be ravaged from the inside out by a disease I hate. I want to know what caused Invasive Ductal Carcinoma (IDC) in my right breast. I want to know what to say to my 14 year old daughter who has walked for a cure and pinned pink ribbons to her T-shirts, but whose own mother cannot tell her how to prevent this disease.
If you look closely enough, you will see the cancer in our gingerbread house. Within the papers in the envelopes that are stuffed along with utility bills and bank statements into a basket on the kitchen countertop; on our coffee table, it is splashed across the pages of publications hidden between Vanity Fair and The Pottery Barn catalog. All I never wanted to know about managing my life during and after cancer. Nothing about how I could have prevented it and what to do if maybe it’s more than I can handle.