One of my favorite aspects of my work is when someone shares their story with me. Thank you, Amy. I know your words will help inspire others diagnosed with this disease.
I hate pink; always have. I always thought it was too foofy, too predictable, too ‘girly.’ Then I was diagnosed. Stage 0 breast cancer at age 45. The conversation went from -nothing- to -calcifications- to -carcinoma-. Just. Like. That. From lumpectomy to nope, you’re not a candidate, total mastectomy. Just. Like. That. And suddenly, I am awash in pink. On my nails. In my hair. I gird myself in a pink tutu, a Wonder Woman t-shirt, Wonder Woman Converse, and a boob-hat-with-a-crown-edge that I crocheted myself. For every single visit. Every single procedure. Every single follow-up. I am one of them. One of the millions of women scared of the words: breast cancer. Scared of the pain. Frightened of the surgery, and the reconstruction, and the scars. Fighting for tomorrow. Shoring up our families. Relying on our friends. Supported by our neighbors, our clinicians, our colleagues. Surrounded by countless women-survivors whom we don’t even know. Carrying the spirits of those who went before us, for whom tomorrow brought a peaceful sleep, but left a wake of sorrow. So here I am, three days before my surgery. My mastectomy. My reconstruction. My recovery. My pain. My journey. Calling senators, congressmen, and women, staffers, anyone who will listen. Because my diagnosis is now a pre-existing condition. My bills will be in the hundreds of thousands of dollars within months. And I am one of the lucky ones: with a job, and insurance, and a care delivery system that is one of the best in the world. But now I am vulnerable, and I am afraid. After three decades of studying, analyzing, and trying to improve the American healthcare system in my professional life, the actual system may kill me. Not the disease. Not the treatment. Because my prognosis is excellent, my treatment options plentiful and effective. But the system. Because if this new bill passes, my insurance will be cut off. Or I will have to choose between the education and financial security of my children, and my healthcare treatment. Will I make a mortgage payment or go to that follow-up visit? Will my daughter be able to go to college, or will I need another round of treatment? My dream of continuing my education and working on community health system delivery systems will be gone, in an instant, because of a treatable disease that has locked me into a way to pay to fight it. And therein to me is the irony. I should be focused on my body, my soul, my strength. Saving every last ounce of energy for the tough road ahead, the patch immediately in front of me. Using these last days and moments before the hospital enjoying the sunshine, my puppy, my husband, my children. Instead, I am spending myself in figuring out insurance coverage, and pre-authorizations, and cost-sharing limits. And begging politicians not to take away what security and protection that I and my family have. And the millions of others like me, in pink, trying to focus on healing, getting well, pushing to live another day for our families and friends and communities. Here’s to my sisters in pink, and to all of us fighting this fight for one another. Here’s to our health, and our wellness, our communities and our collective soul. I will keep calling, and I will keep fighting. And I will keep wearing pink.
Linda Carey is the co-creator of The Tutu Project and President of the Carey Foundation. She has been living with Metastatic Breast Cancer for fourteen years and is an advocate for the breast cancer community.