How can I begin to write about the events and feelings of the past week? I don't know how to put it into words. I don't even want to attempt to. I want to stop writing. In the past when life has become overwhelming, when emotions have become too extreme, or when my heart has become too numb I have just stopped writing all together for a time.
I don't want to do that. It is in continuing to write even through this mind-numbing turmoil that I not only choose, but prove, my identity as a writer. It is through continuing to put words on the page and bring language to pain that I practice and hone my craft into a disciplined skill.
And so I choose today to write despite the fact that I feel dry of inspiration, despite the fact that my mind is spinning from the thousands of responsibilities I balance so precariously, despite the fact that my heart is in pain.
Just over a week ago I sat in the hospital with my daughter. Her little body was still adjusting to the large volumes of formula that were being pumped into her through her newly placed NG tube. Every time I nursed her she threw up. So I stopped letting her nurse. A week ago Sunday her stomach had calmed and they released us to go home.
I haven't nursed her since. For the first time in four years (since my son was born) I am not breastfeeding. I feel a freedom that I haven't felt in four years, but I also feel a sense of loss. A sense of grief. It is likely that I will never nurse another baby. That particular bonding and intimacy I experienced with my children while breastfeeding is over. And it ended suddenly and when I wasn't expecting it.
A week ago today my husband and I flew to Washington DC. On Tuesday we spent all day at the National Cancer Institute. Our plans to fly home Wednesday were uprooted when they decided to have Bryan go through surgery on Friday. They would remove three tumors and use the white blood cells they found in those tumors for a new treatment. He would be enrolled in a study that was getting remarkable results. Our hopes lifted.
Wednesday was a day of stress, a day filled with the sort of administrative tasks I have always hated. Phone calls to change flights and hotels quickly led into phone calls to schedule G tube surgery for my daughter. There were doctors, therapists, and insurance workers to talk to. But by the end of the day there was a plan. I felt productive.
Thursday meant more tests at NIH and quickly Friday was upon us. After Bryan was admitted for surgery the doctors came and filled our ears with discouraging news. Bryan had already had too much radiation to qualify for the study we had planned on pursuing. He could still get the TIL cell therapy, but could not get it combined with other treatment. He would have to pursue some other treatment at home first or wait for another new trial to open. After having a clear plan we were back to an enigmatic reality full of options. And we were discouraged.
As we flew back to Arizona I was reminded of this TED talk, as well as this one, which both talk about how having more options makes us less happy and about how choice is not always a good thing. I'm feeling the truth of that right now.
I want to have a lot of options when it comes to Bryan's treatment. I want to be informed and in control. I want us to be the one's making the decisions. But, I also don't. Today I feel the weight of all of these decisions anew. I feel the fear of not choosing the best option. I feel the uncertainty and all the variables of unknowns involved in these decisions.
I feel tired.
Unable to clearly process through the maze in my head and the wall I have firmly built around my heart, I share facts and half developed feelings. But I still choose to show up. I choose to continue to share. Would you hold on with me as I struggle to be here in this space right now?
Rejoicing in the journey, Bethany