It’s only September, and already I’m sick of Pinktober. Already, there’s been ‘sexy’ pink fundraising idiocy, stupid Facebook ‘awareness’ games, and nine pages of newly execrable pink wearables and ceramic tchotchkes on the Bradford Exchange site. Who buys this crap?
There was a #PinkOFF hashtag circulating on Twitter in the past few years. I say, let’s revive it. Because I’m already pinked off.
In an attempt to introduce a note of reality into the whole awareness thing, I’m going to describe some real-life folks with breast cancer. We are not the “A list” people. You know, the people who take up skydiving after treatment, and go on book tours to advertise the inspirational tomes they’ve written about how skydiving gave them back their lives after breast cancer. Frankly, the rest of us are way too exhausted for any of that, nor can we afford the skydiving lessons or the cross-continental plane fares. We don’t feel like warriors or heroes, and we’re ‘survivors’ only in the sense that, so far, we’re still breathing. We don’t walk around decked out in pink ribbon jewelry or pink sweat suits so that we’re easily identifiable. Some of us blog, when we have the energy. But, in the land of happy, pretty-in-pink breast cancer awareness, we’re not represented. We’re the silent majority, as it were. We’re on the “other” list. And trust me — it’s a much longer list.
What we represent is the reality of breast cancer. So, without further ado, here’s a short list of some of us:
- Seven years after diagnosis and treatment, I’m still tired. Still broke because I haven’t been able to work full-time since. Still have fibrotic scar tissue from surgery and radiation. Still have pain, muscle spasms, restricted motion. Still foggy. Still constantly juggling to pay the bills. But I consider myself fortunate. At least I can work. And so far, I’m still NED — pending my next mammogram in a few weeks.
- There’s a young woman I’ve known for several years now who, after discovering she was BRCA positive, had a preventative bilateral mastectomy and reconstruction. Swear to god, she developed every post-op complication known to womankind — flap failure, tissue necrosis, blood clots, adhesive capsulitis, infections, you name it. The end results, after several hospitalizations and surgeries, are still uneven and imperfect. She’s still tired. She’s still on a blood thinner. She’s still in pain. But she’s a mom and a wife, and her family are just glad she’s still alive.
- Then there’s the woman who is an artist, who developed severe peripheral neuropathy in her hands after chemotherapy. Actually, I know a number of folks who fit this description. One of them had to give up making art entirely. One of them, after years of unrelieved pain despite trying an array of meds, finally found something that helps, and manages to work as an artist, although it’s still a struggle. One of them had to stop drawing, because it hurt too much, and took up photography, which hurt less, although she’s too tired to do enough work to make a living, so she scrapes by on disability.
- Speaking of giving up doing the things you love, there’s my friend who recently had to give up a long, successful, much-loved professional career because of the pain, exhaustion, and complications caused by stage IV breast cancer. It’s hard to have a life when you seem to spend half of it in the hospital and the other half recovering from being in the hospital.
- Then there’s another artist friend who has stage IV breast cancer. Before she had breast cancer, she was an accomplished, imaginative photographer, had gallery shows, the whole nine yards. Not now. Now, when she’s not having more surgery or radiation or chemotherapy, she still occasionally manages to take some fabulous photos, if she has the time or energy after helping to look after an aging parent, as well as her very young grandchildren.
- Then there’s the woman who was treated for Hodgkin’s lymphoma in her early twenties. Years after treatment, she developed life-threatening coronary artery blockage due to the extensive radiation she received. She survived two stent placements by angioplasty, only to end up later being diagnosed with breast cancer. Oy. You don’t get a treatment discount for developing a second kind of cancer.
- Then there’s my friend with stage IV breast cancer who was recently diagnosed with a different, and rare, kind of cancer. If her kidneys are cooperating, she may be getting her first chemo infusion for that second cancer as I type this. Fingers crossed.
I could go on. There’s my friend with metastatic breast cancer whose husband has recurring melanoma. There’s my friend who finished treatment for breast cancer, whose mother was then diagnosed with metastatic breast cancer. There’s my friend whose husband was such a shit while she was being treated for breast cancer, she had to get a divorce. There’s my friend who had breast cancer who later developed Chronic Myeloid Leukemia. None of us are likely to appear on the Today Show or be asked to tell our stories at a Komen fundraiser. But if anyone would like to raise some genuine breast cancer awareness next month, maybe we should. I’m not holding my breath though. And I won’t be wearing pink.