Revelations

Here I was on my way home from Penn in Philadelphia. I’m covering my eyes because they were dilated and the brightness felt like looking directly into the sun. Today I met with a neuro-ophthalmologist. He ran through my story and did his assessment of my eyes and reflexes. He was ready to send me for more lab work in an effort to figure out what could be happening to me. He had the nurse dilate my eyes and left to meet with other patients. I was getting anxious because the drive back home takes an hour and I wanted to get home to the children. I felt the clock ticking in my head and I fidgeted through my phone. Just moments before the doctor returned, I saw an email from Quest Diagnostics that my blood test results were posted! I couldn’t believe it, the providential timing! I’ve been waiting three weeks! As soon as the doctor returned, I showed him the results and this immediately changed his direction for me. Based on the results, it looks as if I most definitely have myasthenia gravis. It was a wonderful confirmation to finally hear a diagnosis, but what happened next was just the beginning. He suggested I up the dose of my medication… in the hopes that it’ll help my eyes. There was no definitive answer as to how soon this could actually be fixed, and taking all of this medication might not really be making any difference at all. He also suggested that I begin a course of prednisone, which he thinks could help fix my vision, but I need to first speak to my other physicians to see if this is safe, with the cancer treatments and gastroparesis treatments, on top of considering the side effects of long-term steroid use. And finally he suggested that I meet with the thoracic surgeon to determine if I should have the thymoma removed. You remember, right? The big open chest surgery? Yes, that one. The one I had put to rest and out of my mind. It’s crept back into my life and it’s terrifyingly rejoining the conversation. I’m at a loss for words and have a lot of processing to do with these new revelations.