I tend to remain a bit tight-lipped when pinktober rolls around and a lot of bloggers jump on one bandwagon or another. My first October after diagnosis made my stomach curl. Everywhere I turned there was a reminder of what I had been through. I had just finished radiation, I didn’t have much hair, I was sick, I was tired and I hated the color pink.
I appreciate and support that everyone has a voice. I have a voice too, and so I am finally going to share some concerns I have.
I don’t hate Komen. I was the honorary race chair this year. I have met several people within the organization. Many that DO care about metastatic breast cancer. Many that DO care about funding research for metastatic disease. Many Komen employees that DO care about metastatic awareness. Do I think that they could/should put more money into funding metastatic research? Yes. Do I also know that they fund a lot of local organizations that help a lot of patients, early stage and metastatic, yes. I also work with my local team to make sure that they have a metastatic voice so that we can look at efforts surrounding metastatic awareness and programs to help patients.
Update and edit: Judy Salerno, CEO of Komen announced that they dedicated 50% of their 2015 research funding to metastatic disease. Read about it here.
Defunding Komen does not solve finding a cure for metastatic breast cancer. Campaigns to tell people to hate Komen only leaves people confused on what they should do, if you are going to tell people that Komen is bad, please make sure you tell them that they should still FUND RESEARCH.
Pink does not cure breast cancer. This is so very true, but when we tell people this everywhere loud and clear, we create an aversion to all of it. People then think they shouldn’t donate to breast cancer anything, so they don’t, because they don’t know which is right or which is wrong – so they will just avoid it altogether. They will avoid the “right” organizations along with the “wrong” organizations because they don’t want to have to research this stuff!
Convincing people that the pink ribbon cause is the wrong cause does not help find a cure for breast cancer. It convinces people to spend less money in areas that DO fund research, that DO fund metastatic breast cancer research. I have worked in marketing for many many years, in marketing land, people are simple creatures and the more confusing you make the message they more they will just throw their hands in the air and just say “screw it.”
That 7% that does go into metastatic research gets smaller and smaller the more we convince people to spend less and less on breast cancer fundraising.
This is the only cause that I know of that has so much inner-turmoil.
Part of this stems from the fact that so very many people don’t know what metastatic breast cancer IS. Including people that have had breast cancer. Doctors don’t want to scare patients. Organizations don’t want to focus on the negative when many people do in fact, go on to survive. However, I don’t ever ever ever want to hear in 10 years someone say “I got stage IV breast cancer, I had never heard about it and my doctor had said I was cured.” We need metastatic awareness, but guess what, metastatic awareness is cause marketing and marketing costs money and this takes away money from research. So when you break up the money pie and pick and choose where money goes, sometimes a sliver of money does have to go into some kind of awareness type of effort.
TV stars go out there and announce that they are cured within a couple of years of treatment, which is impossible for them to know. I won’t name names… You can become metastatic 1, 5, 10+ years after diagnosis. This feeds the misinformation monster. That breast cancer is one tidy little process, you do the time and you will come out CURED!
So what do I think? Buy all the pink things. I don’t give a sh**. I would prefer that you read the labels and saw that the money went to at least one of these organizations because they are trying to find a cure and understand metastatic breast cancer (the www.mbcalliance.org ):
Avoid pink ribbon products that don’t say that they donate to anyone (that is kind of lame, unless you really want a pink ribbon sucker). Maybe just go ahead and donate directly to the organizations, get that tax deduction and help us find a cure for this disease that kills 40,000 men and women in the U.S. every year.
Do not sexualize my cancer though. Please do not take off your bra and take a photo. Don’t shove a coke between your boobs. All you are doing is finding an excuse to show off the fact that you still have knockers and I don’t. KNOCK IT OFF. Go donate money to one of the above organizations and keep your boobs in your shirt where they belong. This disease is not about the tatas, it is about my freaking LIFE. My entire body and all of the places the cancer is eating away at it.
In the meantime I will keep spending my time working with as many organizations that I can, to increase metastatic breast cancer awareness and increase funding for metastatic breast cancer research. I need metastatic research to save my life, I will die from this disease. All men and women with metastatic breast cancer die from metastatic breast cancer. Pretty please, with sugar on top, this month and all months, fund metastatic breast cancer research.
I do also still support organizations that help patients no matter what stage they are and what their needs are. As long as the money is helping patients and paying the people that are running the organization a salary that is fair and equal to other organizations for what they do.
You can also donate money to Metavivor, 100% of their proceeds go to fund metastatic research: http://www.metavivor.org
Me in my DownEast Basics #Liveforpink shirt – last year I won their contest that they sold shirts and raised funds for. I received a gift basket of items that helped me with chemo treatment and they helped pay for Mike and my dream trip to Europe. You can nominate yourself or someone you know this year here: DownEast #LiveForPink
