breast cancer, cancer diagnosis, DIEP Flap, HWAMC, HWAMC 2013 Day 2, JBBC, kindness of strangers, Nancy Brinker, Positive Thinking, prayer, Race for a Cure, reconstruction, Susan G. Komen, Tissue Density, what not to say to cancer patients
~ characterized by insincerity, irony, or whimsical exaggeration
I will be fifty years old next week. I can barely believe it. How did I get here so quickly? Cliched, I know, but it was just yesterday that I was sitting in school, waiting for something awesome to happen. Dressed in my uniform with “Tolerance and Development” embroidered in yellow Latin on the breast pocket of my French blue blazer, I was bored with the weather and school, the prospects in Northern Ireland, bored with my parents and teachers, all telling me that what they were telling me was for my own good. As all good teenagers do, I rolled my eyes, ignored them, and turned instead to equally bored friends with whom I talked every day, sharing secrets, swapping advice, planning our escape routes. Back then, I could not imagine life without them. Even now, when I recall those days, I like to think of us dangling our feet over the edge of the world, sipping Coke from a bottle, listening to records we bought with our lunch money, and daydreaming about what and where we would study, if or whom we might marry, and, most of all, the women we would grow up to be.
We all went our separate ways, but every now and then, we’ll rediscover each other on Facebook or Twitter. Albeit older and graying, with wrinkles around our eyes, we effortlessly pick up exactly where we left off. Magically, all the years and miles between us vanish in an instant along with jealousies and old grudges. Some of us are grandparents now, and seeing the world unfold once more through the eyes of grandchildren. Each of us has known love and loss, sickness and health, support and betrayal. We’ll even admit our parents were right and sometimes wonder if we have actually become them. We remain curious and hopeful about what comes next.
I was the youngest in the group, by a month or two that mattered so much back then. Now, it doesn’t. I still feel like the girl who used to jump off the garage roof into the barley field. Fifty. And still with so much to learn.
I recently had an epiphany. There are things to write about other than being diagnosed with cancer, living with cancer, or expecting to die from cancer. In the beginning, it’s true, cancer hung from every sentence, anchoring me down to an unfamiliar place, where one could easily get lost, were it not for the kindness of strangers. The irony is, that were it not for cancer, I don’t know that I would be writing, and I certainly would not be participating in this challenge.
Far away from heaven, cancer country was not on my itinerary. But since I found myself there anyway, and because I don’t know what else to write about for Day 2 of the Health Activist Writers Month Challenge, I thought I would introduce to you some of the people I have met thus far on this other-wordly journey. Since hearing You. Have. Cancer. I have encountered, sometimes in the same room and on the same day, the noblest expressions of humanity along with the very worst.
Generally speaking, those who have impacted me most on this trek through unchartered territory, fall into one of five categories. If you are beginning a similar voyage, you are sure to meet them along the way:
1. People who … are related to people or know people who know people who died of the same cancer as that with which you were just diagnosed. They will be compelled to share this with you, in excruciating detail, along with their theories on why it happened. They’ll insinuate that it could have been prevented, that those who died must not have shown up for their mammograms or they smoked or drank too much wine or did not exercise enough or they flat-out chose to be too stressed about work when they should have just put their feet up. But – and this is important – because these folks have been blessed with a sixth or seventh sense, they will know you are valiant and a fighter, therefore you of all people will most certainly “beat this thing.” They will pray for you, too, but maybe not too hard because, after all, you got “the good cancer.” They will not tell you, however, that those same prayers obviously went unanswered for the others . . .
2. People who … exercise regularly, and just can’t seem to shift the baby weight, the middle-age spread, or the ten pounds that revisit ever year between Halloween and New Years. They will tell you how incredibly lucky you are to get a boob job and a tummy tuck out of this cancer business. Such a bonus! You should be jumping for joy. Why aren’t you grateful? I mean, you got the good cancer! Following an eight hour surgery during which your breast is sliced off along with its nipple and replaced with a mound of fat and tissue from your abdomen, you will indeed own a flat stomach and a “breast” that weighs the same as your ‘original’ breast, the one that had the dense tissue that nobody told you about, which, by the way concealed the cancer that flourished for nobody-really-knows how many years. Along with that, you will receive an $80,000 bill that will be covered by insurance if you have it, and you’ll be branded with a hip-to-hip incision with JP drains, grenade-like, hanging from long rubber tubes that sprout from either end of it and under your arms. You won’t feel lucky. Stooped and scarred, you will feel old and scared. You will feel guilty for not feeling grateful. You will see fear creep across the faces of those who love you most, and you will feel guilty again, because you don’t know how to make them feel better, because no matter what those other people said, you really aren’t that strong. You will miss your old body and the person you used to be. So will other people. In spite of themselves, they will say the wrong thing, because eventually you will look just like the person you used to be. Only you will know that the person you used to be is not coming back any time soon. But when she does, if only for sporadic visits, you will know clarity and joy. Be patient.
3. People who … worship at the shrine of positive thinking. They will tell you, fervently, that they know exactly how you feel and if you just stay positive and strong, you will triumph. You will kick cancer’s ass. Just fight like a girl. God doesn’t give you more than you can handle, right? Try it, and as you adopt a cheery attitude, try really hard not to think of the people who have died because they just weren’t positive enough or didn’t fight hard enough.
4. Kind strangers. They will reaffirm your belief that people are essentially good. There are scores of women who write in the blogosphere who have saved me from myself time and again – my dear friend, Marie, whom I have never met, and all those writers she rounds up at Journeying Beyond Breast Cancer every Friday. Individuals stand out like the colleague who sat with my husband at the hospital, like my best friend who didn’t know what to do or say but was there whenever I needed her, even when I made her make me laugh about all the ways I could be so much worse off. Then there was the radiologist I encountered the day before my mastectomy. After the obligatory mix-up with the out-patient registration department (its own republic), my husband and I made our way to the Nuclear Medicine room. I remember wondering how many people had preceded me, as I again assumed the position, supine on an examination table, within a darkened room. The procedure that day involved three painful injections of radioactive dye directly in and around the nipple of my right breast. I wince, even now, writing about it. More than the sting of those injections, what has remained with me is the genuine kindness of the radiologist right before he administered them.
I am so sorry you’re here.
… and he said my name as he looked right into my eyes. I do not remember the radiologist’s name. I may never see him again in my life, but his acknowledgement of the trek I was about to begin across cancer country, and his sadness to see yet another person begin it, was one of the finer expressions of humanity I have encountered. I even forgive him for not offering me more of the numbing medication.
5. People in pink. Scores of them, and they cannot be avoided in October when so many of us buy pink ribbons and run races without knowing where the money goes or who to ask to get a straight answer. These people will teach you again and again that there is no escaping the business of breast cancer that is awash in pink. You will find yourself wondering about Susan G. Komen, the young woman who was only 36 years old when she was killed by metastatic breast cancer. In the blink of an eye, just three years, it ravaged her body. You will begin to question the organization subsequently established by her sister. The people selling the pink ribbon products may not even realize that the organization that bears Susan’s name has failed to appropriately address the kind of cancer that killed her. Instead, the Komen foundation has relentlessly emphasized early detection and awareness. All tied up in a pink ribbon. Not good enough, really. Not for me. Not for my daughter. Nor yours. True, I used to regard Komen et al with a mixture of indifference and denial, blithely handing over an extra dollar at the store to go towards “the cure.” Breast cancer was the thing that happened to other people, to celebrities who grace the pages of magazines, to women who didn’t show up for their mammograms. It didn’t happen to me. Oh, what a fool I’ve been – duped and manipulated by its mythology. Jarring it is to associate with disease and death all the trappings of breast cancer awareness that distract – ribbons and teddy bears and perfume bottles and cupcake liners. Such trinkets would not be out of place in a 19th century nursery rhyme about little girls, very far removed from the ravages of a disease that kills. If my breast cancer had a color, it would be white, the same white as the dense tissue that concealed it from three mammograms. But nobody told me to ask about tissue density. Every October, Nancy Brinker’s “conventional messages“ failed to remind me when I made a pink purchase or walked in the Race for a Cure that, free or not, the standard mammography will not detect cancer in dense breast tissue. Thus, detection will come too late for some women and men. When you encounter the pink people, remind them that the time has come for a little less pink and a little more black and white about tissue density or the men who get breast cancer, or the unacceptable numbers of people who still die from breast cancer that spreads to the bone, the liver, the brain, people like Susan G. Komen. Beware false prophets.