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.
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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.
ReplyDeleteI 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.
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