I stopped blogging a few months ago for two reasons. First because I was just plain too busy, sometimes to even eat, let alone sitting down to write, and second, because I finally felt that people just plain knew too much about me, blogging leads to some odd relationships, people who know so much about me, and I, very little about them, it began to seem unbalanced and uncomfortable. So I stopped. Now, if someone wants to know what I’m up to, they have to actually get in touch with me and we have to spend real live time together. Took a break from my virtual life to have a real one.
I was busy dealing with a teenager with a bad case of Senoritis and the accompanying antics, and then getting that same boy off to college in one piece. Simultaneously, I rented a retail space and set about consolidating the various aspects of my schizophrenic, raggedy business into a full time retail store. I’m a girl on my own, so there was a lot to be done in a condensed period of time and limited funds, so I’ve been busy with a capital "B". I’ve been working 10 hour days, 7 days a week since mid-June and I’m finally hitting the wall, I'm exhausted. My store opened on September first, but I’m still moving things out of my beloved studio. Leaving the building I’ve been in for five years, the tall ceilings, and brick walls as well as my studio-mate who has become more than a friend, a sister, which has been difficult. At the same time, I’m trying to focus on my younger son and unplug while I’m at home to be more present and that's been wonderful.
But what puts me here at my keyboard instead of attending to the myriad tasks I’m falling behind on is that it’s Pinktober and this can be a very difficult month for breast cancer patients like myself. While I’m not in active treatment, finally checking in with my oncologist only every six months, I don’t use the word survivor because one is only a survivor until they’re not and I’m well aware of the very high risk I run of being done in, and done in quickly by this disease, which is called, in my case, triple negative breast cancer.
Pinktober is full of pink parties, events, endorsements and pink products. All eyes are on breast cancer and it turns my eyes inward towards breast cancer and makes me angry and sad. I don’t want my eyes focused inward on breast cancer, I want to go about my life, but all of this false “awareness” prevents that. With every billboard or celebrity endorsement I cringe. I cringe at the thought that most people think that breast cancer is a singular disease. I cringe that breast cancer is only important one month of the year, when many of us live with the effects of it year round. I cringe that most people think that breast cancer is easily treated and cured and that the walk or run they just did raised money for anything other than the over head of the run or walk they just did. Yep it paid for the advertising, the t-shirts, the water bottles and the positive P.R. of whatever group with highly paid directors put it on. Maybe that event raised enough money for that group to offer a free class to breast cancer patients about how to draw on eyebrows with a sample of some donated, likely toxic product, because eyebrows or lack thereof, are the chief concern of someone with a life-threatening disease.
All of this awareness leads people to think that you get diagnosed, you get treated and then you go on your merry way. Maybe that’s true for some people. Some people are treated for benign, slow growing cancers that might not even need to be treated because of the awareness hysteria, and then there’s the rest of us.
I’m not fine. I lost my business due to breast cancer. I used to make a good portion of my income selling my jewelry at shows, I can’t do that now because radiation destroyed my right shoulder and I couldn’t possibly put up a tent without excruciating, tears in the eyes pain. I can’t go on that pink walk or run because I have neuropathy in my hands and feet from one of the chemo drugs I had pumped straight into my heart via the surgically implanted port I had in my chest for a year. My heart that my treatment aged 10 years along with the rest of me, that’s what the doctors approximate.
I can’t walk without pain, or stand for long. My right and primary arm is swollen from lymphodema caused by deforming surgery, I still have pain, itching and maddening tightness along the 16” scar across my chest. I have to do payroll and write checks today. I have a hard time holding a pen in my swollen, partially numb hand, so it takes a while and my hand will hurt for two days. Everything takes me longer, thinking takes me longer.
Neuropathy also causes muscle cramps, that’s been a big issue for me lately. Sometimes I’m so tired I just want to sit on the couch and watch t.v. or listen to the radio, but my feet start cramping up and I have to walk in circles to get it to stop. I sit back down and they start right up again. I get cramps going up my legs, in my stomach or sides, just from rolling over in bed. So I don’t sleep well because going to bed I’m contemplating what pain is from treatment and what might be cancer, and then I wake up with muscle cramps and have to get up and walk around.
So that’s what cancer is and it doesn’t matter if it’s breast cancer or any other. And don’t they teach us from early on not to be exclusionary? How do those pink ribbons make people with ovarian cancer feel, or pancreatic cancer, or colon, or bone, or brain, how do they feel? They feel excluded and like second class citiziens, like their cancer isn’t popular, while I feel like everyone’s looking at me and insisting I’m fine because if we talk and talk and run and walk for breast cancer, it must be well in hand, everyone has done their part, all while very few are doing anything at all constructive.
I’m not even going to get into the perverse sexualization of this disease, because I could go on forever, I just want to say this, Pinktober makes me cry. Seriously, I’ve been feeling inexplicably blue and then I realized that’s what it is. This movement, that claims to want to help people like me, is making someone like me, as in me, burst into tears. Pink ribbons actually make me cry. Cancer didn’t make me cry, a year of chemo, rads, surgery, blood transfusions, daily injections didn’t get my spirit down, but these fucking pink ribbons, these corporate assholes and people buying into this crap make me cry. For me, this pink ribbon nonsense shines a light on how not alright I am, the impediments and discomfort I live with and have to accept.
So if you care about peope with cancer, any kind of cancer, if you want to find a cure for cancer, put down the pink. Lobby congress to appropriate money to universities and the NIH for research. Lobby pharmaceutical companies to make drugs affordable, and insurance companies to pay for physical therapy in addition to wigs and prosthetics, in a misguided (in my opinion) attempt to normalize the abnormal. Cancer happened, lets stop covering that up, or pretending it’s a big happy club. Let’s elect people who will fund stem-cell research and let’s put pressure on Monsanto and their ilk and fracking companies to stop polluting our air, water and food so that there will be less cancer to cure.
But please, please, let’s get rid of pinktober so that people like me can just go about their business without feeling disrespected, without bursting into tears. Let us go on with our lives and you go on with yours without having parties and making public statements because it makes you look good or it’s fun, it's at my expense and that's not o.k. It’s not fun from my perspective and frankly, I think I’ve earned the right to my perspective trumping theirs on this. I’ve been there, done that, I live with the after effects every minute of every day of which I have chronic pain, disabilities and fear. Put down the pink product, take off the ribbon or the pink socks, you can do it.
For additional information, please go to http://www.bcaction.org They’re the good guys in my book and they are who I support.
