Building a Mets Community Worldwide

This week, the great folks from Living Beyond Breast Cancer are running a campaign called #stage4lifer and they asked me to write a bit about taking action to combat metastatic breast cancer. I’m a proud graduate of LBBC’s Hear My Voice program and I urge anyone who wants to be an advocate for our community to apply to their 2017 program as soon as it opens! So I’m delighted to contribute to their campaign with this blog post–and I’d love to see all of you getting on social media to help share things with the #stage4lifer hashtag!

I’ve recently taken some time off from MET UP to deal with both the good (#EpicCaldwellVacay) and the bad (treatment). It’s not something I wanted to do, because for me, cancer activism is one of the few things that has made this experience, this life, make any kind of sense. I watch my friends dying, I watch my family suffering, and I just can’t sit idly by and NOT try to do something to change the landscape of metastatic cancer. But sometimes life and cancer get in the way of that work, and it’s frustrating for me to step away from it.

Which is why I was so excited to meet with the members of METUP UK when I was in London in August. That’s right, METUP has gone international! We met up (pun intended) at the lobby bar of my hotel and talked for hours like old friends–which I suppose we are, since we’ve been chatting on Twitter for a long time. 

The thing about metastatic cancer is that even though we live thousands of miles apart, our experiences of living with this disease are so similar. We’re struggling through treatments that make us bald or in pain or sick; we’re thinking about how to plan for our deaths that will come to soon; and we’re gutted every time one of our friends dies in this godawful plague we’re living through. No matter where I go, I see that metsters–that PEOPLE–have the same hearts inside. And we all desperately want to live.

Of course, there are some differences in other parts of the world. In Africa, the picture is much more dire. Patients in Nigeria, for example, often have to wait a year to get into treatment because of lack of cancer resources, and by then, many have developed metastatic disease. The primary treatment for them is mastectomy and radiation, which of course, isn’t effective for the systemic disease that is metastatic cancer. In addition, the cost of health care is too high for many people to afford, so they take out loans to pay for their radiation, then sleep on the side of the road by the hospital (because there’s only a couple of hospitals that do radiation in the entire country) because they don’t have any money for a hotel. Just imagine going through non-curative radiation treatment while sleeping by the side of the road.

I think it’s easy to think of people far away as The Other, as Not Like Us. But they ARE just like us. And they’re suffering. This is why building a metastatic community worldwide is so important–so we can lift each other up, and fight for each others’ lives. Once you meet another person with metastatic cancer, it changes you. Advocacy for metastatic cancer is no longer about you–it no longer feels selfish. It feels completely selfless and vitally important. We’re all going to have to be in this together, or we’ll die alone. 

Nurse Logs

There’s a trail at the Girl Scout camp where I went as a kid and worked as a counselor in college called the Roslyn Bay Trail, and it’s where I first learned about how a forest renews itself when trees die. What happens is, when a tree falls down, the nutrients in it feed new plants–first small plants like mosses, then bigger plants like ferns, and eventually new trees grow out of the remains of the tree that fell. We call these downed trees nurse logs, because they nurture new life even through their death.

Trees have been a metaphor for my experience with metastatic cancer almost from the beginning. The trees down here at the base of this cliff are the people I’ve met in the world of cancer–my metastatic sisters and brothers. I did a video for Living Beyond Breast Cancer during their 2015 mets conference, the one where I met Jennie Grimes and we held the first die-in, and in it I talked about how the women in the video with me are the lovely trees in this horrible swamp of disease we live in. And whenever the four of us would message each other or post on each others’ Facebook timelines, we’d use the tree and heart emojis, to send tree love to each other.

One of those four trees is gone now, our beautiful Adrian, and now only three of us are left. She’s not the only tree I’ve lost recently–of that original Hear My Voice training program in 2015, 6 of us have died, and another is in hospice. And it’s killing me. It’s slowly killing my spirit just as surely as cancer is slowly killing my body. When Jennie enters hospice, when Jennie dies, I don’t know how I’ll keep going on. And I know she feels the same way about me.

The only thing that brings me any sense of meaning to me these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing. 

And someday this forest will cover the world.