Recovery from the 2010 craniotomy made me accustomed to the non-linear healing cycle, but man, does it wear you out. Yesterday, I felt great, probably the best since I've started on the Mekinist. Today, I am beat. Mom thinks the fatigue is a result of two factors: Light and I overdid it yesterday. Overdid it!? I was living my normal life. I know normal has taken on a new meaning, but goodness, I did not think daily naps would become normal.

I am happy to report that while today required a nap, I was able to attend the virtual REiNS meeting. REiNS, the Response Evaluation in Neurofibromatosis and Schwannomatosis international collaboration, was established to achieve consensus within the NF community about the design of future clinical trials. Even before the recent diagnosis, this is a group I wanted to volunteer in. I may have had to put career goals/interviews within the NF community on hold, but I can use my communications career and patient experience for the greater good.