We Are Literally Dying For A Cure

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.

My Disease Is Not A Game

Every October a new social media game circulates and I don’t mean Candy Crush.

I’m sure you’ve seen one of them. Either it’s is an obscure post or you’re send a DM with instructions on what to post. When you read it you’re not sure what’s going on. They go something like: “Ran out of toilet paper…goodbye sox.” If you comment or ‘like’ it you get a message that informs you that you need to pick from one of the listed status and post it for Breast Cancer Awareness”.

Are you KIDDING me?

In what universe does this do anything for anybody? Are you donating money for research?? Are you quoting statistics and educating? No, you’re turning a deadly disease into a joke and causing a lot of people anger and sadness in the process.

I’m going to die because of breast cancer. Posting about winning the lottery or having a foot fungus is NOT going to help me and excusing your ignorance in the name of ‘awareness’ just makes you sound even more ridiculous.


There is another, even more atrocious, game that happens under the guise of Breast Cancer “awareness”. On October 13th, it’s “Don’t Wear A Bra Day.” I am not sure everyone understands that a large majority either had one or both breasts amputated. Those who have undergone reconstruction will never have their pre-cancer breasts again. Still there are other women who have chosen to go flat. They have no breasts whatsoever. Games like this sexualize cancer and demean those women impacted by breast cancer. The worst part of this game is the date. October 13th is also Metastatic Breast Cancer Awareness Day. This is the kind of breast cancer I have and there is NO CURE.

Breast Cancer is the ONLY cancer that’s sexualized. It’s also the only cancer with a marketing plan. It’s pretty offensive to those of us dying of this disease. In the United States, it is estimated that 120 women and men will die every day from breast cancer. That’s 43,730 people every year according to The American Cancer Society. To put that in perspective, when I was diagnosed in 2013, that daily number of deaths was 108.


What troubles me the most is that there isn’t more outrage about these games. I went to the Social Media page that was created for the posting of pictures like that and reported it. I’ve also reported every posting I find. Of the postings I’ve reported to due to obvious nudity NONE were removed.

When will people begin to realize that Cancer is not a game. It’s not a Facebook status. It’s a crappy disease that takes your health, your financial stability, your relationships, your friendships, and your ability to hold a job. If you don’t think it’s all that bad then step right up and live a day in my life or a day in one of my friends lives. I guarantee you’ll run back home as fast as you can.


So, please, please stop these games. When you see them, let those participating know that Cancer is not a game, it’s not funny and it certainly isn’t awareness.