“Do you think that maybe it wasn’t about you?”

“I think what she’s trying to say is she’d like a choice in the matter.”

This was a snippet of a conversation from this weekend. I was sitting with my best friends talking about how I’ve felt the last year. I had misunderstood a text and personalized it vs looking through another’s perspective. Long story short those two lines resonated and gave me the strength to write something that has been on my mind and heart.

It’s not about me. And I wish I had a choice but am reminded daily when I look in the mirror I don’t. Life goes on and not every reaction is one directed towards me and my disease. But it feels that way. It’s hard not to. Because it’s in every single aspect of my life and if you want to be a piece of that life unfortunately you get the disease part of me too. And I don’t have a choice. You do. Walk away. Pretend. Ignore. You have so many choices. You, your life, your choices matter. And you should feel that way because you know you have alternate outcomes. I don’t. And am reminded daily

Stage 1, Stage 2, Stage 3….you will more than likely be given a cure. You will hear no evidence of disease. You will breathe a sigh of relief, celebrate with your loved ones and thank God. As you should. And I pray for you nightly. Those of us in the Stage 4 world will only hear how we will help those in the future with what they learn from us. And that is wonderful….and horrible.

I think of the song by P!nk, What About Us.

What about us? What about all the times you said you had the answers? What about us? What about all the happy ever afters?

And I ask what about us? Why don’t we matter? Why are we treated as test subjects? Why are we treated like we aren’t worth saving? Why?

Last year my jaw began deteriorating from the zometa. The oral surgeon removed the teeth and left exposed bone. I asked if there was more we could do….his response, “Your Stage 4 so it really isn’t worth it.” I’m not worth it. Because I was given a time stamp. I’m not worth it.

Fast forward to this last month. More bone pushing out of my jaw. My oncologists, nurses and dentist have been fighting to get me in to see another oral surgeon. Fighting. So after weeks of them fighting for me there is an appointment set to which my dentist looked at me and said, “I will do whatever I can. You matter. Your life matters. Be an advocate as I am for you.”

I don’t want control. I want to let go. Are you ready? I’ll be ready…

She sums it up there. I don’t want it to be about me. I want it to be about the countless Stage 4 souls that matter. And I want it to be about you. I want to let go of this noose around my neck. I want a choice. I want a voice. I want to be worth saving.

Thank you to Dr Fagbemi, Jane, Stacy, Deirdre, Kalli, Dr. Crow and my other incredible nurses for always fighting for me and believing I am worth it. I’m blessed and healthier for knowing you.