I Still Have Work To Do

Five years ago this August, I was told I had 2-3 years left to live. Five years ago I wasn’t ready to die. Today, I’m still not ready, but it’s not up to me; so until that day – I have work to do.

When I look back over these years since cancer invited itself into my life, it’s a tapestry of faces, friendships, events, gatherings, meetings, and experiences that literally takes my breath away. I have a very difficult time reconciling the fact that none of these things would have happened and I never would have met the people I’ve met had it not been for cancer. I didn’t want it then and I sure as shit don’t want it now. But I can’t have one without the other. If there is a God or higher power, he or she has a really twisted sense of humor.

In the world of cancer, especially early stage Breast cancer, doctors tell patients that once 5 years “no evidence of disease” is reached, you’re allowed to exhale. When you have Metastatic disease and you’ve lived 5 years, you’re basically living on borrowed time. I am extremely fortunate that I have had a good response to the treatment I’m currently on, however, my eyes are wide open and I am fully aware that at anytime this could change. I am now racing to beat a clock that’s ticking down to an unknown time that will only be revealed in the moments before the big hand strikes twelve.

I have been a vocal advocate for Metastatic Breast Cancer for damn near all of these 5 years. I’ve shouted on my own. I’ve lent my voice to others when needed. I’ve been part of new projects. I’ve helped launch grassroots activist organizations.

Through all of these things, I’ve met, worked with and learned from the most amazing people. Many of whom have since died. Each person has left a footprint on my heart. One individual in particular not only left a footprint but she also took a chunk of it with her when she left us.

Beth Caldwell is that person.

In the months before Beth died, we spoke frequently about how we needed to keep advocacy and activism at the forefront. We were making plans to meet at the last big conference of the year the San Antonio Breast Cancer Symposium and discuss a plan to keep moving forward. Sadly, that meeting never happened.

As most people did, I respected the hell out of Beth. I still do and always will. More importantly, we were on the same page of the same shitty book when it came to what we felt needed to happen. We needed to shake shit up, make noise, storm the gates and take no prisoners if we wanted people to hear us and help save us. Enough was fucking enough. Lives are at stake – our lives. When she asked me to help get METUP off the ground, I was all in. When I stepped back to pursue other projects, I continued to support Beth & METUP. Beth was a force. Beth roared and people listened. She roared until she couldn’t.

It’s important that Beth’s vision continues. She worked too hard, for all of us, for the ball to get dropped now. I can’t let that happen – I won’t. I know she’d kick my ass if I did and I’m not ashamed to admit I’m a little afraid she’d come back and do it.

That being said, It’s my intention to use this borrowed time to do Beth proud. I will be taking an active leadership role with METUP.  It’s my intention to help grow the organization with active volunteers so we can continue to address the important issues facing Metastatic patients through direct action.

I encourage anyone that is interested in getting involved with METUP or those that want to learn more about what METUP is all about go to METUP

5 thoughts on “I Still Have Work To Do

  1. Beth Gainer June 18, 2018 / 9:17 am

    Hi Susan,

    I agree that Beth was a force, and so are you. Sending hugs. xoxo

  2. barbigelow June 14, 2018 / 11:12 am

    Let me know what I can do to help….and congratulations!

  3. Coffee With Coop June 13, 2018 / 8:03 pm

    I’m sorry Beth is no longer with us. But your attitude is truly inspiring. One of the greatest lessons I learned from Jenn is, although I hate to sound corny, to live like you’re dying.

  4. Witchpath June 13, 2018 / 12:01 pm

    YES!!!! Woot woot! I’m behind 250%

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