Not So Pretty in Pink

Put down the pink ribbons, please, because you're making me mad. Linking PINK to breast cancer and thinking PINK! when you think about breast cancer only reinforces a sweet Hallmark Card vision of something that is distinctly unpretty. Pink is a color for Valentine's Day, and decorating a nursery, and Hello Kitty merchandise. Pink yogurt cups and NFL wrist bands might soften the ugly word 'cancer', because we Americans definitely prefer to view hard truths through rose-colored filters. But breast cancer is a rough ride for so many of the one out of every eight American women who must travel the BC path. It is time that we embrace the truth: These millions of journeys are individual and difficult, and often long, circuitous and deeply isolating. For survivors, the need for support lasts a lifetime. Breast cancer has left me broke, homeless and sicker than ever...and not because of the cancer itself. Cancer didn't hurt me. Cancer doesn't even crack the Top Ten of 'Worst Things to Happen' in my life. People hurt me. People who were too selfish or busy or cowardly or lazy to stick with me for the real breast cancer ride: A rollercoaster of scary, hard, exhausting, boring, messy, confusing and unpredictable. Family hurt me. The brother and father who, once again, couldn't be bothered to express or demonstrate love for my apparently inconvenient and embarassing character defect of ill health. But that's what they do; that's what they've always done. I became seriously sick and nearly died in my mid-twenties, and have been fighting back ever since. My mom and sister have supported me in every way. Shelter, food; cars, nephews; laughter, love. Dad and John? Cancer didn't change anything, nor did I expect it to. From the men in my family, I continued to get disdain, disgust and, most of all, emotional distance. With breast cancer, however, I experienced an unexpected first from a particularly important group of people: Doctors. Doctors hurt me. Badly. With my primary medical condition, I was accustomed to being proactive, and weeding out providers who were unwilling to tackle a complex systemic disease. While my cancer diagnosis was unexpected, and certainly unwelcomed, it didn't scare me too much. Because I immediately went into 'Best Doctor Selection Mode' and got to work. Then, for the first time in forever, I felt I could relax a bit. Breast cancer is so common compared to what I've been living with for decades. I got the Best Docs, so they got this, right? Of course, I still read and researched everything, posed questions and weighed options. And damn, I felt instantly better once that lump came out, and all the lab work came back as great as possible. Stage I only; lymph node clear. Tumor size modest; margins clear. Oncotype testing showed that IV chemo was unnecessary; my BRCA results were clean. Oh, and my great insurance covered every penny. But oncology's standard formula for someone at 47, even with such good news, still mandated 35 radiation treatments and 5-10 years of daily oral chemotherapy. In spunky post-lumpectomy Lisa, doctors only saw a simple Stage I breast cancer patient. Whew, she's not gonna die; follow the formula, and we're done here. The oncologists failed to see a unique woman with a complex pre-existing medical history, and the primary care providers failed to communicate with the oncologists. Every doctor downplayed or completely omitted warning me about treatment side effects. When debilitating symptoms and then severe side effects arose, the oncology team denied that they could be treatment-related. In fact, they implied or flatly stated that I was crazy for believing they were. It was years before a smart, compassionate GI surgeon figured out that I'd contracted a serious hospital-borne infection called c-difficile during radiation. My GI tract is destroyed. There are two dozen or so foods that are safe for me to eat--safe meaning 'Not locked in the bathroom all day.' I've recently moved to Los Angeles to find a doctor who can give me the fecal transplant that is highly effective for treating c-difficile. The transplant is a simple, inexpensive procedure, but FDA-approved only for patients with a documented history of the infection. The Vermont doctors failed to recognize, properly test for or document the infection, much less treat it. So I must hope to find a thoughtful doctor in California who will treat me anyway. Hope. Hope sustained me through everything that had come before cancer, and a lot of really messed up stuff had come before cancer. What terrified me more than anything over the last five years was how I began to lose sight of hope from time to time. Breast cancer isn't nearly as bad as the hurt people can cause when you have breast cancer. And how that hurt can cause you to lose hope. The first step to full recovery, for me, is to rekindle that effervescent, unbridled, Lisa-brand of hope.