“I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined…imposed silence about any area of our lives is a tool for separation and powerlessness.”
-Audre Lorde, The Cancer Journals
If you were to google the phrase “motivational quotes,” you would likely come up with hundreds and hundreds of pinterest-worthy graphics urging you to trust life, face your fears, find faith, and my personal favorite, “it will be ok.” By the end of 2018, once I had signed the consent forms to enter in the clinical trial, I found solace in none of these things. I was angry. Angry that my body had let me down, angry that I was forced to reckon, once again with my mortality, angry that my family and I were having to forge ahead into yet another new normal. I felt robbed of time, of stability, of understanding, of peace of mind, however small it may have been. I felt so angry that I was having to spend my holidays once again dancing with the harder topics of my diagnosis while my inner monologue was constantly pitching a whopper of a temper tantrum.
I was scheduled for yet another set of scans on December 31st, 2018. My husband was off work that day, and we had planned to have a small New Year’s celebration as our family of three. Instead, I spent the day getting a bone scan and a CT scan, as per the protocol with the clinical trial. The Sisyphean task of scheduling these scans alone gave me perspective as to how much of the clinical trial would function. I recognized early on (although gaining that recognition did little to alleviate my frustrations with this situation) that I was on a “one step at a time” balance beam. Each step in the process would lead to the next, and there was very little room for speculation of different options. I would follow the protocol and when it was time for the next step, I would be given the information needed to succeed it. And so it was. We went from the first step – scans – to the next step – a bone biopsy – to the next, an appointment with the trial nurse where was given the trial medications. One step at a time. We moved like Hansel and Gretel from one bread crumb to another, unsure whether the path we were on would lead us to a house of cake or an evil witch.
I felt so burnt out, so overwhelmed and discouraged, and so defeated by both the peripherals of this disease and the disease itself, and so I gave myself permission to check out of as much of cancer land as I could. Felix and I took an extended trip to visit family in Arizona, where we played in the sunshine, took walks on warm January days, went to the zoo and rode a camel, and convinced my parents to adopt a new dog. You know, the usual things that happen when one visits family. On the flight home, our layover in Chicago brought yet another unexpected twist when an ice storm cancelled all outbound flights, and we found ourselves facing an overnight adventure in the airport. After some wonderful friends came to our rescue with a warm bed and puppy snuggles, we were rebooked for the next afternoon and spent most of the morning at the Chicago Aquarium. And I had even remembered to pack my meds in my carry-on. It was a small but significant victory, reminding me that I am so much more than my disease. That I am still living, and still able to take challenges – like a cancelled flight during cross-country solo travel with a 3-year-old – and make something wonderful out of it.
Slowly, I began to rebuild some of the confidence that had been so quickly replaced with fear at the end of 2018. I had the incredible honor of walking with AnaOno x Project Cancerland x Metavivor in the NYFW 2019 show. I participated on the Thriver Panel for the Breast Cancer Research Foundation‘s annual Corporate Summit. I accepted a position with Health Union‘s newest website, advancedbreastcancer.net, as a writer and content moderator. I had my first set of scans on the clinical trial. I attended the Young Survival Coalition‘s Annual Summit in Austin, TX. And I’ll be releasing Season 2 of my podcast, The Intersection of Cancer and Life, on Thursday. I think each one of these things deserves a blog post of their own, but for now, it’s good to be back.