We Are Literally Dying For A Cure

Before Cancer, my Twitter and Facebook feed was filled with friends complaining about the inconveniences in their life – who got cut off in traffic, who spilled coffee on their clothes on the way to work and many voicing displeasure about the weather being too hot or too cold.  Now there isn’t a day that goes by that I can say “Wow, no one died today”.  There is always someone letting a group know of another life lost to Breast Cancer or a family member updating their loved one’s page letting friends know they are finally at peace and no longer in pain. Each time there is news of a death, it’s devastating. Each time the consistent thought running through my mind is “This didn’t have to happen”

The numbers and statistics are staggering. Those of us in this life that is Metastatic Cancer know them all too well.  They aren’t numbers we make up, they are fact.  As frustrating as these numbers are, what is even more frustrating is that there are people that don’t want to acknowledge or hear about Metastatic Breast Cancer. I get that talking about a terminal illness can be depressing but not talking about it and pretending it isn’t happening while men and women are dying every day is irresponsible.

There have been articles and news of possible new breakthroughs and treatments for specific Breast Cancer types but we still keep dying. There are new trials, new drug combinations but we still keep dying.  People keep participating in races and buying into the ‘Pink Propaganda’ but we still keep dying.

pinkisnotacure2

I feel like it’s time to take the gloves off and really rattle cages to make people hear us. It feels like our voices are just echoing into the abyss and not really heard. An upsetting statistic from mbcn.org is that “7% of the 15 Billion invested into Breast Cancer research from 2000-2013 by the major government and non-profit funders in the United States and UK was spent on Metastatic funded research”. Only 7% for the 155,000 people in the US living with terminal Breast Cancer. That’s part of the reason that 108 women die every single day.  Even the medical researchers admit that there is a lack of funding making it very hard for them to do their jobs.  Add to that Senator John McCain (R-AZ) is offering an amendment to the National Defense Authorization Act (NDAA) on the Senate floor which would do irreparable damage to the Department of Defense Breast Cancer Research Program.  Many of us have been Tweeting and calling our local State Senators to implore them to vote against this amendment. Clearly, the US Government is also unaware of the staggering numbers of men and women dying every year.  Or maybe because it’s Breast Cancer it’s not looked upon as a serious matter.

It’s so frustrating to me that when I (or others) try to educate and inform women that have either not been affected by Breast Cancer or have had ‘early’ stage Breast Cancer of the truths and implications of what exactly a diagnosis of Breast Cancer really means and could mean for their future. It is most often met with denial and hostility. Women have been led to believe that Breast Cancer is the lesser of all other evils but the cold hard truth is that ALL Breast Cancer is terminal if it isn’t found early enough and even when it is, there is a 30% chance that it will end up in an organ or bones and that’s when it becomes terminal. It’s criminal that women are not told this information at the time of diagnosis. Instead, women are force fed information and brainwashed into thinking if they follow their surgery, chemo and radiation (not necessarily in that order) they will be good as new.

There have been Social Media campaigns on both Twitter and Facebook with hashtags to create noise and get people talking about Metastatic disease. They started out strong and we were all excited to post till our fingers bled. But it isn’t enough.

Last week there was a video that came out by a woman with Metastatic Breast Cancer. She had all the right statistics, pictures of her precious children and set it all to a fantastic song that everyone could relate to. It went viral. She got a lot of press and was even featured on Good Morning America. It was a huge step for those of us that are dying to be heard. But soon the hype will quiet down and Metastatic disease will once again fade into the background where everyone wants it to be.

Tonight I saw part of the movie, The Normal Heart. The funeral scene where the actor Jim Parson’s gives the eulogy resonated with me. Although it’s about the death of a man who had AIDS, the words ring true for those of us with Metastatic Breast Cancer:

“In Closing, I’m just going to say I’m mad. I’m fuckin’ mad.

I keep screaming inside: Why are they letting us die? Why is no one helping us?

And here is the truth – the answer – they just don’t like us.”

dying for a cure'

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5 thoughts on “We Are Literally Dying For A Cure

  1. Viral Holley says make a video, tell your story, tell our stories, tell someone else’s story and how it impacts your life. Be loud!

  2. I shared this post on my facebook page with a comment about how frustrated I am by some early stage patients NOT being informed of their risk for metastasis (luckily that did not happen to me, my onc was pretty good about that). I added this comment because that is what I find so alarming about the Kitchen story–from her video and her interviews I gather her doctor was not upfront with her about what could–and did–happen to her. Someone commented to me that this happened to them as well.
    Absolutely the culture and the Pink message sold to general public needs to change from the early detection=cure lie. But more importantly, doctors who are NOT properly informing early stage patients need to be held accountable for this. My stomach is starting to turn over this, I am so horrified.

    • I couldn’t agree more. I don’t know if they are trying to give hope but I thought Dr’s always gave the good, bad and ugly when it comes to cancer. I guess breast cancer is the exception.

  3. ❤ you. I am so mad at John McCain. SO MAD. Why would anyone ever want to decrease funding, we need more than 7%!

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