October 15, 2015

Pinktober means

I have never, not even once in thirteen years, danced with "NED" in my dance with metastatic breast cancer. NED, of course, means no evidence of disease. I started off with bone mets, and once with them, as with a broken bone, there are always leftover reminders. So no, I've never danced with NED.

I've also been overwhelmed by the newest mets-sisters belief that they are dying of mets; that pink is not a cure; and that there is nowhere near enough research on mets. The second and third bits are true: pink isn't a cure and the NCI still funds too little towards any metastatic cancer.

But I have have a hard time grasping the first point. Am I dying from mets? How does that explain 13 years of living with it?

I remind myself that at the very beginning of this dance with advanced cancer I dreamed that my house was too noisy with other people I didn't know. I ran from room to room asking them to be quiet. And when I woke up, I realized that the house was my body and the people were my tumors. I gave my cancer a chance to quiet up and I would give it a home forever, because if I died, my cancer would die.

That's still true after 13 years, and I have to remind myself of it, especially now that I'm involved with younger activists who argue differently. I still want to be involved with them. They are the future of metastatic cancer.

I just am not ready to die.

Think Before You Pink.

The day we died on the Capital.

Awash in Pink.


  1. I'm working on a similar, post trying to sort out my thoughts on Pinktober and die-ins and my particular approach to this disease. You are an amazing inspiration, and I'm so glad to know you.

  2. I am my own person in this world of metastatic voices, you are too! 13 years is an amazing story and you are such an amazing soul. You keep being you! I will keep being me. Beth will keep being Beth and all of our voices may hopefully help make more futures for many people.