I’ve been running the same routine of rehab and therapy the last few months. The best moments are those when you realize that you can go a little bit farther than before, or talk a little bit more without losing your voice. Sometimes the progress is so slow that it’s difficult to know it’s even happening. 

It can be difficult to keep up spirits when it’s hard to know how far in the future it will be before you’re the same person you used to be. Sometimes I can be watching a movie and be triggered of a memory by this or that. A memory of walking through woods, spending an entire day in a theme park or traveling the country. These things seem a long way off now, while at the same time seeming that they were done a lifetime ago.

The next step in this journey is to return to Lawrence Oncology next month for an infusion of Rituxan. This is a chemotherapy-type drug that is used for my treatment schedule. It is one of my steps that I take in the hopes of getting back where I want and need to be, while waiting for a breakthrough medication that will specifically target this disorder.

I have to make sure I’m ready for these infusions, because the last time I had them I went through a dramatically poor turn in my breathing. This is likely because of the increase in fluids, but my doctors and I aren’t completely certain. I have a month to prepare and get ready to weather another storm, waiting for the day when I and others with this disease will see clear skies again.