We here in the United States are truly viewing the world through rose-colored glasses as pink products and pink ads are everywhere. The NFL has donned the traditional pink they wear at the beginning of this month (I don't think they wear it all month long) and races and relays "for the cure" are happening all over the nation. One has to live in a cave to avoid the pretty pink of this time period.
This is my fourth October with breast cancer. I've long struggled with how to be an effective advocate during the month, recognizing that many who wear pink do so in honest support of a loved one. I don't mind that at all ... I just don't want them buying pink thinking that it funds research in any meaningful way.
During October of last year, I wore specifically designed tee shirts that had my logo on the front and some challenges on the back. Each shirt had the line, "I am Stage IV. Talk to me." I worked more on a "stealth ninja" approach in how I handled pink product displays and to be honest ... my approach didn't work at all. No one spoke to me.
I changed my approach this year. I decided to be more personal and informative and to use imagery in how I communicated, both in words and in walking around.
I designed different tee shirts and brought them to the same shop that made my tee shirts last year. I printed out what I wanted each shirt to say and worked with a young 20-something man at the layout table. He was pleased that I had printouts of everything so that there would be no misunderstanding.
Three of the shirts have on the back, "What about the rest of me?" along with an image of skeletons with red coloring showing where I had breast cancer. There is one small yellow oval representing my liver and it has four red dots in it representing the four tiny lesions in my liver that are assumed to be breast cancer.
"What about the rest of me?" is in response to what I have on the front of the shirts.
Shirt one: The Ta-Tas were saved, but ...
Shirt two: No cancer here, but ...
Shirt three: Second base was saved, but ...
Shirt four: I'm seeing red (the back of the shirt just has the image on it with the red highlights.)
The young man quickly worked up the back of the shirts, but when we flipped them over to work on the front, a confused look cross his face.
"I'm not sure I get what these mean."
I explained that the fronts told the story that I had no cancer in my breasts. He cut me short, "That's great! Wow, that's just great! That's what we're working for, right?"
He was so enthusiastic and authentically pleased. I showed him the back of my shirt again with the images. I pointed out where I had breast cancer in my body.
"I don't understand. I thought if you didn't have breast cancer in your breasts that you didn't have breast cancer anywhere. I thought the goal was to have no cancer in the breasts."
When I went to pick up the shirts, the woman who owned the shop was there. I had worked with her last year. Her face lit up and she exclaimed, "I remember you! Look at you! You look so pretty and healthy. You must be cured!"
I unfolded the shirt and said, "Unfortunately, I'm not. In fact, the cancer is worse." I showed her the image and pointed out the cancer.
She looked at the picture and she looked at me and said, "I don't understand. How can this be? How can this be breast cancer throughout your body?"
A customer in the shop asked, "Are you on kidney dialysis?"
"No," I replied. "My kidneys are fine for now."
"My mother died of breast cancer in her kidneys. She also had big lumps on her back. What's the deal with that? Were those tumors?"
This woman was angry ... very angry.
I explained that it was likely her mother had cancer that spread to her skin and formed tumors on her back, but that, of course, I didn't know for sure.
The woman continued in her fury. "I don't understand. I don't understand how someone can die of breast cancer 12 years after they first had cancer and after they had no breasts. I don't understand how breast cancer can be in her kidneys or how breast cancer can form those big lumps. I just don't understand."
And that's the problem. I'm finding that people honestly and truly don't understand. When they see all the tantalizing campaigns that make breast cancer cute and funny, they genuinely believe that the answer to breast cancer is no cancer in the breasts.
"Save the ta-tas," "Save a rack," "Check your headlights," "Save your bumps, check for lumps," "I heart boobies," "Save second base," "Breasts are man's real best friends," "Save the melons," "Save a life, grope your wife," "Cop a feel," etc ... these are all designed to insinuate that if these slogans are followed, then the beloved female in your life will be safe.
One friend told me that if her "Save Second Base" tee shirt reminded one woman to get a mammogram then wearing it was worth any offense that it may cause others.
I've repeatedly heard, "That mammogram saved my life!" when a lump has been detected and breast cancer treatments begin. The unfortunate truth, though, is that mammograms don't save lives. They allow for earlier treatments to begin, but until research has found a way to predict which tumors will be permanently obliterated, never to return, then it doesn't matter what a mammogram finds. (Note, I am not saying don't get a mammogram. I am saying that early detection is not the cure-all that it's been made out to be. There are too many women who had early detection who have become metastatic and have died. This is the truth that is not told.)
My friend, Sheila, was furious when she was diagnosed with metastatic disease four years and eight months after her early stage primary diagnosis. She was absolutely livid because she believed that if she made it to the five year point, she would have been cured. It took a while for her to grasp that there's nothing magical for the five year point for most hormone positive cancers. On top of the shocking news that she had metastatic disease, she also found out that her disease had changed over the years and had become triple negative. It marched relentlessly throughout her body and she died 13 months after she was diagnosed metastatic. (But you know what? She's still listed as a Stage II survivor because she lived five years after her Stage II diagnosis. That's another post for another time.)
Another friend was diagnosed with Stage I breast cancer six years ago at age 45. She had a double mastectomy and radiation for her tiny 6mm tumor. (That's about the size of a pencil eraser.) Has been on Tamoxifen ever since. Fast forward to now ... extensive metastatic disease in her chest lymphatic system and disease in her lungs. But, according to statistics, she's included in those 98% survival statistics that you see advertised all over the place during October.
Their stories are two of too many.
I don't understand.
I don't understand how this is acceptable. I don't understand why the sea of pink puts out a message of distortion.
Have you seen the ads trying to discourage people from smoking? They portray the horrific truth of lung cancer.
Have you seen the ads about breast cancer? They're pretty in pink and many of them are sexually tantalizing.
I don't understand.
What's wrong with this picture?