Taking on a new lookWhen I started Optune, I had no idea what kind of questions I was in for while using it in public until I experienced it firsthand.
After being diagnosed with glioblastoma, I had open and honest discussions with my doctor about potential treatments. This is how I came to learn about Optune. I was told how it could help me manage the disease. But I was also told I had to shave my full head of hair, which was difficult for me. My hair was part of my identity, it took a lot of me to get rid of it. It was also what differentiated me from my brothers—who were all bald!
It took some time to get used to once I finally shaved my head, but I slowly became accustomed to it. I used to feel awkward and uncomfortable, especially out in public. I always felt people were staring at me. Most of the time, I wear a hat out in public to protect the arrays, not because I thought people would be staring.
I was uncomfortable going out in public with Optune at first, so I started wearing a do rag to cover the arrays whenever I went out which helped me get over being uncomfortable. However, when I don’t wear anything over my arrays, Optune has drawn some questions from strangers, and I’ve never had a problem with answering any questions they have. I’ve been approached many times by people asking, “What is that you’re wearing on your head?” Every time I’m asked that question, I always explain that I have brain cancer and the device on my head is called Optune.
Having open conversations
That will usually draw the question, “What is Optune?” I usually describe it like this: it’s designed to emit electrical fields into the brain that disrupt cancer cell division and potentially stop them from growing and dividing. I’d also explain to them what the arrays are and that they need to be changed every few days. Now, I’m very comfortable going out in public wearing my arrays.
What I’ve found is that after I explain what Optune is, I usually get positive comments and well wishes. And, for my family, it’s no longer “what is that?” Now, it’s “how are you doing?”
Finding comfortOptune hasn’t changed who I am or how I communicate with anyone at all. In fact, I like to think it makes me stand out. I think that being asked questions and explaining what Optune is and does is very informative and fulfilling, both for me and the people who are asking.
This story makes me chuckle, so I want to share it: When a new priest started at our church, and he saw me for the first time, he asked what I was wearing. I explained to him what Optune is and what it is designed to do. He was impressed and said it looked like something from Star Trek, which made me laugh. He always asks me how I’m doing, and I really appreciate his interest. It’s comfortable conversations like those that can create lasting relationships, and, not to mention, educate others.