Pink-to-ber n A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)
During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.
Jen wrote today’s post. Her story is very special because she is one of the very view metsers that have gone into remission. Jen was diagnosed in 2008 at 41 years old with Stage IV breast cancer (liver and bone mets), Her2 and ER positive. She is a single mom with two daughters. Fortunately, Jen had a complete response to chemotherapy and has had no evidence of disease (NED) for over five years. She’ll be on Herceptin for the rest of her life. Let’s turn it over to Jen now; please give her lots of comment love!
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Oh the funny looks I get when people ask if I am doing the Komen Race for the Cure and I politely say I do not support Komen. WHAT?? You have breast cancer? WHY?
Well, I guess I wish they would change their name. Komen is not for the cure. The cure is not a hideous pink awareness campaign. The cure is not about pom poms and awareness. The cure is completely about research. Komen gives less than 18 percent toward research and only 3 percent towards metastatic breast cancer research. For clarification, early stage cancer does not kill. Metastatic breast cancer is what kills.
Thirty percent of early stage breast cancer will eventually turn metastatic. And 97 percent of metastatic breast cancer patients die. With all this awareness, it is amazing how many women are totally misled. After 8, 10 or 15 years, the cancer has returned and they are dumbfounded because they were told they were 98 percent cured. That 98 percent was a five year survival rate which is touted constantly. Seriously, these poor women are in shock that they are now metastatic. How often does the awareness campaign cite these statistics????
What can I tell you about being a metastatic breast cancer patient? I was diagnosed at the age of 41 with Stage IV right from the start. I found my own lump and the mammogram could not pick it up even though it could be felt. Neither did the ultrasound. When finally diagnosed six months later, I had Stage IV cancer spreading to my lymph nodes, liver and bones. I am a single mother of two daughters. I work full time and have had to continue working full time as I am the sole source of income and insurance.
Since May 2008, I have had treatments every three weeks and that is over 100 treatments so far. The thing about metastatic cancer is that I will never be done with treatments as long as I am alive. They may change as treatment fails but I will always be on treatment. I am lucky as my treatment, for now, has only a few side effects and I can manage fairly well. For the first six months, I was not well at all and many others live years struggling like this. What people do not realize is that by February every year, I max out my out of pocket expenses and immediately have $2500-$3000 uncovered expenses. Not to mention the co pays with doctor’s appointments and prescriptions. Also, I have to take off work one afternoon every three weeks. Finally there is the dark cloud over my head saying, “you have a terminal disease”. Ninety-seven percent will die from this disease.
So when you look at me and see that I look pretty healthy and normal, you should look a little deeper and see that I am afraid, financially burdened, tired, and angry. I am angry that pink brain washing, especially in October, has taken center stage and presented a pink happy image that we are really making strides against cancer. I am angry that so many people make money off our struggles and pawn it off as supporting breast cancer awareness. I am angry that if Komen was keeping their original mission, the money would be going into research that finds a cure. I am angry that all this attention and enthusiasm couldn’t be rallied in to research that makes a difference. I am angry that I know so many wonderful women and many very young women and young mothers who are suffering and dying. I am angry that no awareness is drawn to the death rate and that this has continued to happen at the same rate as it did back in the 80’s when Komen was started.
October is a very difficult month for those with Metastatic Breast Cancer as we are the ones who feel failed. Where is our hope?