“You. Have. Cancer.”

Since hearing those three words, I have encountered, sometimes in the very 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 may even run into them along the way:

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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 even 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 . . .

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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 amputated 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. The truth is that 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.

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 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? Some of these people even post inspirational quotations on Pinterest, like “Losing is not an option.” As you repeat this mantra, attempting to 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.

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 Kind strangers . . . who will reaffirm your belief that people are essentially good. There are scores of women who write in the blogosphere and who have saved me from myself time and again – my friend, Marie, whom I have never met, and the bloggers she rounds up at Journeying Beyond Breast Cancer every Friday one of whom is Kathi, the beautiful, brainy no bull-shit Accidental Amazon with her humor and heart. Certain individuals stand out like a colleague who didn’t know my husband but waited at the hospital with him for the better part of a day, like the radiologist I encountered the day before the mastectomy.

I will never forget him.

 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. But more than the sting of those injections, what has remained with me is the genuine kindness of theradiologist right before he administered them.

… I’m so sorry you’re here

And he said my name.

He said my name as he looked right into my eyes. I do not remember the radiologist’s name, and 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.

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 People in pink . . .  scores of them who cannot be avoided in October when so many of us buy pink ribbons and run races without knowing where the money goes or whom 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 very 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 the mythology of mammograms and the promise of pink ribbon.  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 women and men.

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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. 

So this October, if you are more than aware of breast cancer and want to help end the pink ribbon marketing and manipulation, please support Breast Cancer Action’s 2014 Think Before You Pink campaign – a direct call to STOP THE DISTRACTION