Someone recently asked what October means to me. October meaning Pinktober, Breast Cancer Awareness Month, etc. In all honesty it means something different today than it did three years ago when I was diagnosed with Stage III Breast Cancer. When I was first diagnosed, the pink movement was comforting to me. I was part of a tribe of women like me, diagnosed with breast cancer and we were sick but we were also wrapped in pink, pretty in pink. I was not alone. But slowly I began to realize how much people outside my pink breast cancer world did not know about this disease, how much I did not know about this disease (even though my mother had been diagnosed 15 years earlier). Every October the pink ribbon campaign pops up and there are cutesy slogans on merchandise everywhere like “Save the Tatas” and “Be Aware, Save a Pair” ad nauseam. Some of them are cute and funny, and really if it makes someone look at it and think “yeah I’m late for my mammo” or that they need to remind their mom, daughter, friend, or sister to get their well woman check-up and mammogram, then it’s working. I actually have a shirt that I love:
Awareness aside, not all of the pink merchandise actually benefits breast cancer research or the women (and men) that breast cancer touches. If you are going to purchase breast cancer paraphernalia please check to see whether the proceeds actually go to something worthwhile and not just to line the pockets of people capitalizing on our misfortune. I’m not saying don’t ever buy that cute little sparkly pink keychain or the graphic tee with the cool slogan unless you can verify where the proceeds end up, but don’t assume because it features breast cancer that the money goes to an actual charity. There are excellent organizations out there such as Metavivor, Living Beyond Breast Cancer, and The Breast Cancer Research Foundation that rank high with Charitynavigator.org.
I see a lot of women say they hate pink and will never wear it and will never embrace it. That’s fine. You gotta do you. I don’t hate it, but I don’t see it as a beacon of hope like I once did. Now I see it more as a symbol of camaraderie, something that connects us as kick-ass fighters and survivors. No color can cure a disease, but assigning colors helps differentiate types of cancer and spread awareness. Wearing it isn’t enough though, we must educate and by educate, I don’t just mean reminding women to get their mammograms and perform self-checks. That is all well and good but we must explain to the world that although mammograms are important, they are not foolproof. Mammograms do not always reveal cancer, especially in women with dense breasts as was the case with me. It is imperative to pay attention to your body and talk to your doctor about ANY changes. We must also inform the world about how invasive breast cancer has no cure. There is treatment, yes, but the best that we can hope for is having No Evidence of Disease or “NED” which is the technical term in breast oncology. We are never cancer free until we die of something else. Despite undergoing every possible treatment, invasive and sometimes non-invasive breast cancer can and does return, in a year, or five years, or twenty years. Think about Olivia Newton-John. This is her third time facing this beast in more than twenty years. We are all literally walking time bombs with a pink monkey on our backs. I don’t say this because we need sympathy. I say this because we need everyone to understand that just because treatment ends, we still suffer through crap. We worry about recurrence. We have anxiety. We have temporary and permanent side effects from the treatment and from our maintenance drugs. I will tell you that the maintenance drug I am on for ten years makes me feel 90 years old. It gives me wicked hot-flashes that make me want to freeze my head. It makes me so constipated I poop tiny rabbit pellets. As a result of my surgeries, my chest is 90% numb. My left triceps is completely numb. I get phantom itches I cannot scratch that I refer to as the “itches of ghost boobs past.” I have neuropathy in my hands and feet from chemotherapy. God forbid I lay on my hand for more than thirty seconds it will take me five minutes to shake it back to life. Then there are the scars. I have two scars across my chest from my bilateral mastectomy. I have scars in my armpits where lymph nodes were removed. I have an oval scar on my left foob and a horizontal scar on my back from my reconstruction surgeries. I have a two inch scar on my upper right chest from my chemotherapy port-a-cath insertion. Don’t get me wrong-I am super proud of my scars because to me they are a symbol of strength. But they are also daily reminders of what has happened and what can still happen.
So for me, Pinktober is two-pronged. It’s spreading awareness to get screened and perform self-exams, and more importantly it is awareness of metastatic breast cancer (MBC), also known as Stage IV, because many women with metastatic breast cancer began this craptastic journey with an early stage diagnosis, described as “highly treatable”. In fact according to the Metastatic Breast Cancer Network (MBCN), at least20% of patients were initially diagnosed at an early stage, and some estimate that figure could actually be as high as 30%. But you know what? Also according to MBCN,“there are currently massive gaps in how people with metastatic breast cancer are counted–our cancer registries don’t track metastatic recurrences–something MBCN and its fellow MBC Alliance members are trying to change.” Here is a Metastatic Breast Cancer For Dummies lesson. You get diagnosed with breast cancer in your boob (because you were the unlucky 1 in 8), and then it spreads to your lymph nodes. Through the lymphatic system or bloodstream the cancer travels to distant organs like your bones, brain, lungs, ovaries, liver, peritoneum, colon, skin, and/or a plethora of other locations, many times undetected. I recently read about a women who had metastatic breast cancer (mets) to her eye. Her EYE y’all. These women do not have eye cancer, lung cancer or brain cancer. They have metastatic breast cancer. Once it goes into other organs, there is treatment that may or may not work and if it does work, may stop working. But there is NO cure. Each diagnosis and prognosis is different depending on way too many factors to list. I know ladies with MBC who have been thriving for 10-20 years. But that is not the norm. The American Cancer Society states that the five year survival rate after a Stage IV breast cancer diagnosis is 22 percent. No amount of pink anything is going to change that. It is going to take research and research requires funding. According to MBCN and Metavivor.org only 2-5% of cancer research funds are spent on metastases, yet it kills 90% of all breast cancer patients. Another reason to donate to Metavivor. This Pinktober I will embrace the Pink but I will get up in your grill about awareness. I will tell you that 1 in 8 is TOO MANY. I will tell you Breast Cancer isn’t pretty in pink. It’s scars, it’s sadness, it’s terrifying and too often it’s death. So by all means #ThinkPink but also spread the word #StageIVNeedsMore.