This weekend was a turning point for me, and not in a way that I had hoped. On Saturday morning I noticed I was having trouble seeing out of my left eye. It has been getting progressively blurry over the past month, but now I was seeing double, the images I would look at with both eyes would not sync up into one image. I tried wearing contacts, not wearing contacts, wearing glasses, not wearing glasses. Nothing seemed to help. By Sunday, I was still seeing double, which interferes with just about everything - from driving, to cooking, walking, and of course my favorite pastime, watching tv. The only way I could cope was by covering up my eye and using monovision.
This morning was more of the same. I went to my radiation appointment with the help of my mother guiding me on my walk. Anything more than 12 inches in front of me begins to double, which can cause vertigo and disorientation. My radiation oncologist today was the epitome of incredible doctor with the most personal touch. He checked on my radiation side effects and then I spilled the beans about everything I've been going through... the gastroparesis, the weight loss, the taste changes, the dry mouth, the delayed infusions, the thymoma mystery, and now the double vision. He was floored, but he leaned in with such intrigue. He was excited to offer thoughts and suggestions, and he immediately jumped to a big conclusion - myasthenia gravis (MG) - an incurable autoimmune disease that breaks down the communication between the nerves and the muscles. I told him that I had an appointment this afternoon with a neurologist and he suggested I mention it.
Afterward my mom and I stopped by the party store to pick up a costume eye patch because I was tired of squinting it closed or putting my hand on my face. It wasn't that comfortable but it was worth a try.
The neurologist, unfortunately, was the polar opposite in personality and bedside manner. I perceived him as cold, uncaring, and not listening to what I was actually saying. However, he did his due diligence and checked my reflexes, including my eye tracking, and set up a plan. He said he could do nothing about the gastroparesis because there is no neurological basis to test for evidence or conclusions, and to leave that to the gastroenterologist. But he was concerned about my double vision and apparent eye muscle weakness. He is also leaning towards myasthenia gravis, so he is putting me on medicine to see if it helps with my vision. He is also sending me for a brain MRI, bloodwork to look for MG antibodies, and he will conduct an EMG, a nerve stimulation test.
All of this comes out of left field for me, and this is how I'm feeling now. I can't hold back the tears because I'm frustrated and angry that I have ONE MORE THING wrong with me! I didn't see this coming, but in a way, the doctors could have seen it and are now looking at it from a different angle. Both doctors today made the connection between myasthenia gravis and the thymoma, as in fact my oncologist mentioned in passing with a lot of uncertainty the week before last. It turns out that having a thymoma can cause myasthenia gravis (you can read more about it
here). But why all of a sudden? Did I have this all along? No one could have known because I was not showing any symptoms, but a potential trigger for MG could be anesthetics, and all of my problems began after my surgery (although having cancer was the real start of my problems, but we won't dive down that far... which came first, the cancer or the thymoma?). So now that I'm showing signs of something, the doctors are putting two and two together, and they've come up with a really messed up four.
On the one hand, I'm glad that I may be able to put a name to the problems I'm facing right now. It's better than going years with symptoms and no answers. But I'm also angry and sad that I have this new challenge, one that I could be faced with for the rest of my life, one that is already severely impacting my daily life. I will know more as I go through the testing process, but I feel like the testing has already begun, of my patience, my faith, and my hope.
Now I'm going to shower and crawl into bed, my safe space right now, where I don't have to move around and look far away at anything, where I don't have to feel discouraged by my weakness, my disability at the moment. Thank God for tv shows on the iPad, no more than 12 inches from my face.
