Will this keep Jennie alive?

Will this keep Jennie alive?

Last year, I met an amazing woman named Jennie Grimes through Living Beyond Breast Cancer's Hear My Voice program. Jennie sat next to me in our first session of training and I was immediately impressed. And hearing her story, of an initial cancer diagnosis at 27, of a metastatic diagnosis at 29, of (at that time) almost 5 years of metastatic treatments, of losing her chance at being a mom because treatment stole her fertility...well, that's when a switch went off in my head.

I'd lived with my metastatic cancer for a year at that point, and I'd reached the anger stage of my anticipatory grieving process. I was angry that there weren't better treatments. I was angry at the lack of research dollars flowing to metastatic disease, which accounts for virtually all of breast cancer deaths and 90% of cancer deaths across organ of origin. I was angry about not getting to see my kids grow up, because median survival with metastatic breast cancer is only 33 months.

But after meeting Jennie, I knew what to do with that anger. I was going to channel it into doing what needed to be done to keep Jennie alive. I was going to demand that more research dollars go towards metastatic disease, and I was going to do it through direct action. Little did I know that Jennie felt the same way about me--and that's how MET UP was born, an organization committed to changing the landscape of metastatic cancer through direct action.

Since MET UP began, we've staged 6 die-ins across the country, met with Congressional staffers, testified before legislatures, held signs at scientific meetings, and kept up an endless social media campaign outing groups whose work will not save Jennie's life, or the lives of the other 250,000 Jennies living with metastatic breast cancer in the US, or the lives of the countless others living with MBC across the globe. And we've partnered with other groups, like Tigerlily, who understand that our cause is righteous, that our anger is understandable, and that our work is important.

But in cancer land, there can be a lot of egos, and agendas, and distractions from what really matters: keeping the Jennies alive. It's easy to go off course and end up mired in the weeds of the political intrigues in cancer land. There are so many fundraisers that don't contribute to research. There's so much research that doesn't contribute to saving lives. And there's so much posturing between cancer advocacy organizations about who gets what piece of the pie. And none of that is productive at all.

So, we've begun to ask ourselves a question every time we need to make a decision: will this help keep Jennie alive? If the answer is "yes", then we're all in. If the answer is "no", then we stand in opposition because it's a distraction from what really matters. We protest because it's how we get the attention of the decision-makers who are ignorant of, or who have ignored, our plight. We meet with political leaders to beg for our lives. We connect with researchers, and connect researchers to each other, to move the science forward.

All of this, we do because new and better treatments are the only things that will save Jennie's life, that will save the lives of all the Jennies of this world. This is the thing that drives us every day, in everything we do. It's what keeps me going in the face of hostility and belittling from legacy breast cancer groups--that what I'm doing can help keep Jennie alive.

The brutal truth of our movement is that neither Jennie nor I will see its final success, because this will be the work of years, and the odds are that neither of us have those years. But the harder we work, the faster we can change the landscape for metastatic cancer, the more Jennies will be spared from the death that Jennie and I will face.

The amazing Shannon Curtis wrote a song for our movement, and my favorite line from the song is "I am determined to save your life." That's what MET UP is about, and our movement won't stop until metastatic cancer is no longer a death sentence.