Pinktober is upon us! I like the color pink, and I do appreciate all the attention breast cancer receives. I belong to a wonderful organization called Pink Ribbon Girls that supports people going through treatment, and belong to other pink organizations. I know I am “lucky,” if you can call it that , to have a disease that garners so much attention and support.
But for me and my fellow metastatic (stage IV) sisters and brothers, every month is breast cancer awareness month. And for many of us, we may need something else pink – Pepto Bismal – to get through it. We live it every day and many of us, like me, aren’t bald or even in the chemo chair that much (I’m on an oral chemotherapy). We don’t get the attention. So when you’re out and about, remember those of us who may not look like we have anything going on, but are living our lives every day with the knowledge that it quite probably get cut short. We need a cure, not awareness. We are aware, very aware …
I don’t think the majority of the population is aware of metastatic breast cancer – or other metastatic cancers, really. During Pinktober, we get ambushed by all this feel-good pink merchandise and success stories of people who caught it early and treatment is behind them. “Get a mammogram!” “Feel your boobies!” It’s the battle cry and the promise that if you just catch it early enough and wait five years without it coming back, then you’re hunky dory. Oops, am I being snarkastic here? I’m not dissing early detection. It does help save lives. I’ve just had too many wonderful women friends pass away from cancer and many of them caught it early like me.
For those of you new to my blog and my story, I was diagnosed four days shy of my 39th birthday. I was deemed too young for a mammogram, but I did find out by doing a self-breast exam. I always had lumpy boobs, but this lump was different. I was diagnosed with stage II cancer, no lymph node involvement. I was told my prognosis was excellent. I had a lumpectomy (and no, that is not the reason it came back), heavy-duty chemo that landed me in the hospital for five days with dangerously low white blood counts (and a bald head and body) and 30 days of radiation. Then I was sent along my merry way with a little pill called Tamoxifen and told that after five years it was highly unlikely it would come back.
Well it did – five years and two months after I completed treatment, to be exact. It didn’t come back in my breast; it came back in my armpit, liver and lung lymph nodes. No one told me to check my armpit. When I found out, I lamented that I didn’t get a mastectomy. I was told it wouldn’t have mattered because my breasts were clear.
Because October 13 is Metastatic Breast Cancer Awareness Day, I wanted to go over some common misconceptions about breast cancer, especially metastatic breast cancer:
- With the fairly rare exceptions of some people I feature here and in my book, treatment is never over. We are on treatment until it stops working, then we try another. Sometimes we can achieve NED (No evidence of disease), but a lot of times it is fleeting. There are many treatments that don’t cause hair loss or at least for some. Everyone reacts differently.
- Because we’re in it for the long haul, we need friends and family to be there with us for the long haul. Just because many of us may not look sick; it doesn’t mean we aren’t.
- A majority of us are NOT dying of our disease … well at least at the moment. Of course it depends on how advanced it is. I like to think of it as living with a disease. I’ve been living with stage IV cancer 5 1/2 years. Yes, I’m like a kid who counts 1/2 years.
- It’s estimated that 20 to 30 percent of early stage breast cancers will metastasize. I know that’s scary, but it’s another reason we need to be fighting harder to find a cure for this disease!
- There is hope. We are living longer, thanks to new targeted drugs and people taking better care of themselves in body, mind and spirit. According to www.patientresource.com, “Studies have shown that new treatments have led to a 30-percent increase in the average survival for women with metastatic breast cancer. In fact, survival now varies widely, with some women living for 20 years or more after a diagnosis of metastatic breast cancer.”
I’ll end on this hopeful note because I know personally the power of hope. I am grateful for new treatments, for all the wonderful people I’ve met from this journey, and for life itself. This weekend is Homecoming for my daughter. I was afraid I wouldn’t live to see her enter high school. She just wrote a beautiful paper for English class saying what a wonderful mom I am. Wow, that’s priceless! Thank you all for being there for me for the long haul. I love you all.