Update: 6/21/16

Another new update. It’s like things never stay exactly the same. Kinda like…everything else. Sunday I finished my first round of chemo pills. I take them 5 days in a row each month for a year. Turns out I don’t just take the clinical trial drug those five days a month only too. I do, in fact, take them those five days, plus every other day of every month. Someone happened to ask when I received a lot of pills at the doctor’s office. Like enough for the whole year if I only needed to take them 5 days a month for a year. Good thing someone did ask. I would have seriously messed up the plans. Except now I’m taking 12 pills a day, every day! My physician’s assistant mentioned that people generally complain that the hardest part of balancing the chemo with the clinical trial is the scheduling. I take 6 (significantly sized) trial pills on an empty stomach when I wake up, then wait an hour before breakfast. Two hours of no eating after lunch before the second set of 6. The timing hopefully falls around 4pm but seldom in actuality. Again no eating for an hour after. Then, two hours after dinner with no eating I follow with a treat of chemo pills at night before bed. Initially I shrugged and scoffed at the “scheduling” complaint. Turns out “people” were right. Scheduling those is hard. I’m tolerating both well though and hope to continue to do so.

Other than that drastic discovery, a few more things have solidified. I now know for certain that I start radiation  on the 30th. I have five sessions. The 30th of June, 1st July, then (after a break to celebrate with loud noises) the 5th, 6th, and 7th of July. Only 5 sessions, and I think short ones. Cool beans. And I get the wear a special positioning mask made of a hardened plastic mesh that started out soft and hot and was form fit to my face. It’s very similar to the one I wore last time, except faceless, because this is the future!

I also had a few out-patient therapy sessions and I have a few more coming up. OT, PT, and ST (Occupational, Physical, and Speech Therapies if you're not in the know). I see two vision specialists later this week and their reports will help inform my occupational therapists what to concentrate on in the vision/hand-eye-coordination departments. Basically everything is moving forward. Although nothing is particularly fun, it’s all good.