The Adventures of Justin McGoo

I had to reboot my mind this evening. Thinking through my frustration hasn’t worked well for me. Since Saturday, I haven’t been able to read, write, or do much of anything and today I realized that the recent incapacitation has led to a struggle with impatience. Katie has done a great job of reminding me to take things one day at a time, and she’s right. I’ve been getting way ahead of myself these past few days. It’s just been a difficult adjustment for me. I’m not used to feeling so helpless.

We met with the ophthalmologist this afternoon. I performed a series of tests that confirmed I’m a few years away from being cast in The Adventures of Mr. Magoo. The test reminded me of the Brian Regan’s bit about not taking the eye test seriously and ending up with coke bottle glasses:

This was the first time that I’ve ever had a full blown eye exam. I put in the numbing eye drops and was freaked out to learn that they were actually touching my eye when they checked my interocular pressure. I was more surprised when they told me that the normal amount of pressure is 20 and mine was 52 and 43. Anything over 30 is considered an emergency. And to think that my eyes were just a little sore today, sort of the same feeling you get when you stay up all night to study or watch tv. I would have liked to have known what the pressure in my eyes was on Sunday, when the pain kept me bed ridden for twenty hours and was unbearable enough to cause my entire head to hurt.

I was immediately given four different eye drops and a couple of pills to get the pressure down. Then we waited for over an hour to see if the medication would work. My next test resulted in a 19 and 13. Good news. Soon after, they dilated my pupils. Next, they looked for any pathological signs and symptoms. Through that, they found that both of my optical nerve heads were swollen and inflamed. It’s most likely due to the trial drug, but there’s a distant possibility it is caused by a chronic form of glaucoma, which can be a result of MEK inhibitors. Although DCC-2036 is a TKI inhibitor, the ophthalmologist needed to find out if it still fell under the former category. She’s going to make a suggestion to Dr. Cortes that I get an MRI of my brain to make sure there’s no other significant pathological source of my agitated optic nerves. The hope is that it is merely drug induced and that some time off of the drug will give me back my original vision. 

The most important issue is that it is now recommended that I not continue the DCC-2036 trial. I was experiencing a little reluctance to go back to it anyway, but if it weren’t for today, I may have given a lesser dose another chance. There are other options than DCC-2036, but this confirms that we’ll be pursuing a bone marrow transplant as soon as it’s available. That’s the best chance I have to survive. But as for now, it’s one day at a time.

Thank you for all of your concerns, words, and prayers. Your support makes a difference, especially when I have my human moments. My body feels like it’s been in a car wreck. It’s sore from head to toe, as I try to gather back strength. I’ve been off of all medications since Sunday. I’m hoping for a swift recovery of strength and eyesight within the next few days. I’ll write as I can.