Last week the school I teach at went on a retreat. I always enjoy getting away, seeing people that I don't get to talk to all that much normally, and spending more time outdoors, or at least in rooms with windows.
One of the activities I was assisting with is led by a psychologist who counsels our high school students. She likes asking questions and in general I don't mind answering. Then the question of how my "skin thing" was doing.
At the time when I decided to tell my colleagues about it, I felt very worried and concerned for what might happen with my CTCL My skin had been getting progressively worse at an exponential rate. I was in that panicked space of worst case scenarios. I knew that I wanted and needed their support and telling them seemed like the right decision at the time. Because I still have my hair, people assume that I must really not have cancer. I try to explain about various treatments and how chemo would be a possible treatment down the road, but if I can treat with a less harsh method and get results, why would I jump to chemo.
The questions about my "skin thing", although well-meaning, always leave me feeling like a baby who's whining about a little diaper rash. I try to explain that overall I am at a best case scenario right now and that I realize how blessed I am that treatment worked, but it's starting to come back and I'm nervous about round 2.
Knowing now where I'm at, I'm not sure that I would make the same decision to tell everyone. I'm extremely thankful for the kind and supportive notes I received right away, and it definitely helped with my emotional response to know that I had that much support backing me, but sometimes I wish I could now erase their knowledge of my CTCL. That I could make it so that's not what they think about when they look at me.
