Originally posted on June 19, 2015: Reposted on 10/1/2020.
Before Cancer, my Twitter and Facebook feed was filled with friends complaining about the inconveniences in their life. People who got cut off in traffic, others spilled coffee on their clothes on the way to work, and many voicing displeasures 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 makeup. 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 ARE DYING. People keep participating in races and buying into the ‘Pink Propaganda,’ but WE . ARE . DYING.
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 the Metastatic Breast Cancer Alliance 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.”
Let that sink in, 7% for the 155,000 people in the US living with terminal Breast Cancer*. That’s part of the reason that 117 women & men die every single day. Even 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. That it’s not looked upon as a serious matter.
It’s so frustrating when I try to educate or inform folks that of the truths and implications of what precisely 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. Still, the cold hard truth is that ALL Breast Cancer is potentially terminal if it isn’t found early enough, and even when it is, there is up to a 30% chance that it will end up in an organ or bones 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.
10/1/2020 Update: Last month, on Twitter, I put out a thread of 5 tweets. In this thread, I ‘busted’ four popular breast cancer ‘myths’ (or what I like to call myths). Unsurprisingly, there were some unhappy people that disagreed. Not only did they disagree; they called ME angry and bitter. I am not shocked by these words at all. I have been called those and worse and I owned it. I was. I used to be. I was shocked that the women that came at me were metastatic breast cancer patients. This is not a joke. Even after five years, which is when this blog was originally written, there is still a great divide. There is an urgent need for factual and truthful education around breast cancer, all of its implications, and metastatic disease.
There have been Social Media campaigns on 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 Holley Kitchen, 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.
10/01/2020 Update: Holley died from MBC on January 12, 2016. Seven months after she published her viral video. She was No Evidence of Disease when she made the video that is now part of her legacy.
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.”
* Statistical facts have been updated to reflect the current numbers as of 10/1/2020.
<3 you. I am so mad at John McCain. SO MAD. Why would anyone ever want to decrease funding, we need more than 7%!
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.
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!
I have a project in the works but videos have been done before and eventually they get forgotten because people can’t admit they could someday be us.