My overall mental state waffles between "I'm fine" to "Holy crap, this tumor is more than a tumor; it's brain cancer."

For the last week, I've been stumbling to the kitchen at 4:30 am to take my oral chemotherapy and then stumbling back to bed. Things are evening out, and my poor balance is returning. (This is much better than walking with a highly irregular gait last week.) There isn't too much I can control - I can't force the insurance company to cover me; I can't banish this tumor to oblivion; I cannot just be healthy. What I can control is scientific discovery.

Upon learning, I would start a Mek-inhibitor chemotherapy, I ordered digital calipers. I figured, if the Mekinist is going to shrink my brain tumor, my dermal tumors will likely have measurable reductions. (Afterall, the Mek-inhibitor Selumetinib was approved just last year to reduce plexiform tumors in patients with NF1.) Before starting the Mekinist, Mom and I got out and measured the size of each dermal tumor. To keep with true scientific discovery, we made sure to use metric measurements.

There is a lot of my control, but I will seize control where I can. Each month, I intend to capture the data to measure the results.