The breast cancer experience is a new world. Stepping from your familiar terrain and landscapes into a new one, you see things differently. And while, at first, you're foreign to it all, the strangest thing is that you get used to it. Parts of it, anyway.
It's a new world, with different fears and experiences. Different clothing. Different routines. The people are even different, as new people emerge - doctors, surgeons, nurses, even new friends - those people who come out of the woodwork to be there. Unfortunately, people also disappear.
I've heard this world described in a lot of ways. Experiential and emotional descriptions to share just what it is like:
"Instead of being a stay at home Mom, I have chemo for eight hours, and come home to try to help with homework. I'm sick, and I don't have the same patience with my daughter."
"I look at my body in the mirror and I am different. My scar ravaged body is different. My surgeries have caused me to gain weight and I don't recognize myself anymore."
"I have been cancer free for fifteen years, but I have this new pain in my legs. Is it cancer? Is it back?"
"I am 19 and just found out that I have BRCA. I'm going to have the surgeries, but how do I date with no boobs and no ovaries. Who will accept me?"
I am scared. I am different. I am living in the past fear. I am living in the present fear. I am living in future fear. I have no eyelashes and I miss them. I am changed.
I see life in a new way. I have a new lease on life. It is mine and I will love it. I am grateful.
There are so many ways to see, acknowledge, and understand breast cancer. But the best thing that I heard was from one metastatic breast cancer patient to another: "We are all here breathing with you." It says everything: holds space, holds mindfulness, holds the feelings, holds the person who needs it.
And that's just it. There isn't anything that we can do to fix it. SO many people wants solutions, want answers to the madness, want a map of this new world, want to find a way back to our old selves, a way back home if you will. We can't, though. We're here, transported. Sure, we have the action plan - the list of chemos, the radiation countdowns, counting down the days til the surgery. For those of us who are previvors*, we have the days until the next scan, the wait, the scanxiety. The action plan gives a schedule, but does not address the walk along the way.
In the month and a half since this project has started, there has been a wonderful and awe-inspiring response. People have stories to share, experiences from this new world. People want to connect. People want to feel heard. People want to have others simply breathing with them. I am honored that this project creates and holds a space for that.
In this month and a half, there have been 65 responses on the website. 65 stories shared online, an art workshop in Madison, Wisconsin, an art workshop at Gilda's Club in Grand Rapids, Michigan, four in-person interviews/story sessions. This shows great growth, but the best moments for me are to observe one person sharing their neuropathy experience, and another person across the table nods knowingly. Or one person sharing what they bring to chemo, and another person chiming in about what lollipop they like to bring as well.
Connection. Understanding. Holding space. Breathing with you. This is the mark, this is the sign that I am heading in the right direction with this. It is an honor to be here with you all. I am thankful everyday.