Since my diagnosis, I have wanted to walk with open hands toward each treatment. Treatments, no matter how much discomfort they cause, are saving my life.
On Monday, radiation #3 started off mentally dark.
Each treatment, I lay down on a flat bed and two to three radiation techs line me up. They ask what music I want to listen to. So far, it's been Norah Jones, John Prine, Nickel Creek, Allison Russell, Lizzo, Tracy Chapman, and a seventh I can't remember (7 treatments down; 9 to go). I have three stickers on my chest and like crosshairs, these are lined up to lasers so I align the same way each time. They move a sheet under my body to make minor adjustments, tugging and pulling just so. The calmness is predictable and surreal. Then, they leave the room. The music plays with intermittent ads. The ceiling tile just in front of the radiation machine is backlit and has a large, purple and pink cosmic scene.
The machine starts poised right above my face and I try to peer up to see into the void that sends radioactive waves into my body. The first three treatments, I stared up at the machine and thought "I hate this. I hate this."
Once I got my diagnosis, I feel like I stepped onto a conveyor belt as I moved toward each new phase of treatment. Staging and fertility preservation. Six rounds of cytotoxic chemo. Surgery. Radiation. At each phase, my body goes, because I want it to and I ask it to. But there's never enough time for my mind to have a chance to catch up, for me to absorb information, ask questions, be curious, and understand. There is too much to understand, let alone absorb. I hear. I ask. I trust. I go. I adapt. I recover. I begin again.
On Monday, I shared with my radiation tech team that I had a new mole on the back of my right arm (which is my radiation side). They had my radiologist look at it. He said it was nothing to be worried about; it's a growth of no concern. I asked a few more questions. He thinks I will have burns, but they won't show up until I am through radiation treatment. Following the end of radiation, he predicts that days 1-7 will be when burns show up. Days 7-10 will be the peak, and then my body will begin rapid healing. My right breast will be a different size and shape after this. And in the months to come, likely after my last infusion, I will start to process.
Everything he said made me angry.
I am angry that burns may be out of my control. I do my lymph drainage movements every day and lotion up like I am stuccoing a house. But burns are out of my control; there is no magical actions to take so I must wait. And then I will see. And my body will be permanently altered after radiation. In that room with my radiologist, I had fears that maybe I didn't know enough information about side effects like fibrosis. What if I don't know enough to ask the right questions? What if I am not doing enough? What if I am somehow being passive, and it could cause permanent losses? More permanent losses? What if side effects will come and I will not even know about their existence until my body feels the touch of their imprint? And the bit about "processing" that will happen in the months after treatment ends -- well, I have fears about that. If I am going to undertake some significant mental/emotional challenge, how will I do that, and prioritize that, when I am sucked back into the regular rhythms of life? And, also, removed from my oncology team? When I imagine this future state, it feels untethered and unmoored.
When I first got diagnosed, I did not want to dwell in fear. Those first days, especially after I was in limbo with no plan or care team, I redirected my mental energy to anger. Anger is energizing (followed by exhaustion). I did that, again, on Monday. Anything feels better than uncertainty. If I am not in control, then how can I be ready to respond and fight? And what would happen if I just let the conveyor belt take me?
So. I've been thinking on that---my need to have control, or, a sense of control. I was raised to consider all the angles. To vet the possibilities and be prepared for all the worst case scenarios, just in case. Because of this, I've mostly always been prepared and often over-prepared. Sometimes, I didn't go forward because I didn't know if I could handle all the paths of possibilities. When I think back to my twenties, I wish I took more risks.
And yet, the times in my life where I have most admired myself, I have not been in control. In 2010 I moved to France and when I showed up in my new town, I knew no one, had no lodging, and would leave with an incredible community and fresh, fully-alive, and new experiences. Last summer, training for the Rut 28k helped me learn to embrace the trails with the knowledge that things would not go as planned. My goal became to train so I would be confident in my ability to adapt. That was success---being able to adapt and continue.
My struggles have begun to shift from the consuming physical challenges of treatment to the mental realities of survivorship. With that, I am reading again "No Mud, No Lotus" by Thich Nhat Hanh. The book opens up with these lines:
"Most people are afraid of suffering. But suffering is a kind of mud to help the lotus flower of happiness grow. There can be no lotus flower without the mud."
The book continues that when we suffer, we think we are failing at happiness. "That isn't true. Being able to enjoy happiness doesn't require that we have zero suffering. In fact, the art of happiness is also the art of suffering well. When we learn to acknowledge, embrace, and understand our suffering, we suffer much less. Not only that, but we're also able to go further and transform our suffering into understanding, compassion, and joy for ourselves and others."
I am going to keep reading because I know my need for certainty creates suffering. I don't want to fear suffering that may or may not happen and that may or may not be how I imagined it before it even came into existence. And I know that when I approach radiation with my mind going to "I hate this," I am lost to myself. My body is tight. My presence is stilted. My breath does not flow. I will not see any of the good around me. And I feel this--I see how I am creating this.
At my first appointments, I saw everyone who I encountered as a source of strength, humanity, and solace to get me to the other side. I still remember the names of those first people who guided me. Instead of feeling only the fear of the unknown ahead, I felt the power and peace of being well held by strangers. But in that radiation room, I am barely present. I know the names of the people taking care of me, but I don't feel close to them or present with them. Truly, I don't deeply see them. Which, is a loss. Soon, these radiation appointments will be a memory. I don't have particularly flouncy ideas of what I will take from these treatments, but I do want to be present to whatever moments of love, care, beauty, levity, humanity, and tenderness can be.
So today, I walked in, laid down, and did the treatment. The radiation team and I shared our weekend plans. Nothing transformative occurred, but I didn't walk out wanting to peel the experience off my body. My breast is starting to feel tender like I took a well-paced soccer ball right to my chest. I worry my tissue is thickening and I continue to monitor this. Round eight will be on Monday.
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