The final stretch of round 1

I have three more days in my first round of treatment.  Hallelujah.

It is a difficult experience and state to explain.  I am incredibly tired.  I went to bed at 7pm last night and slept until almost 8 this morning.  I took a 2 hour nap this afternoon and I'm ready for bed now at 9.  I feel like I'm walking around in a haze which is a partial mix of the vision loss and a partial mix of the brain swelling.  Life just feels foggy.

The radiation is dehydrating and so I'm trying to drink more water but it is very difficult to wear my contacts because my eyes are so dry, my mouth is dry, my skin is dry.

My hair is still coming out in small sections.  For the most part I think that is over with, but every time I pull my hair tie out a pile of hair is with it.  I really don't believe it is that noticeable, but I won't be able to wear my hair down for a very very very long time, if ever and so when I think of things in those terms it is overwhelming.

When I am awake and especially in the morning I feel very alert and cheerful and very much like myself.  I get through most of the days feeling great.  But everyday, mostly in the 4-6pm window I hit a wall and I need to lay down.  I can see the sunshine outside and for the life of me I can't get myself to go for a walk or to sit outside.  We drove by Green Lake last weekend and people were outside playing all sorts of frisbee and volleyball and I knew that there was no way I could muster up the energy to even sit out on a blanket.

There is no way to know who long the fatigue will last.  From what I've heard and been told it will likely last a few more weeks and then start to get a little better before I go through the "tank" stage where my body shuts down for a week or so.  I'm hoping May will start off with a little more energy and then mid May I'll feel the radiation effects and then I'll be back on my way, ready for the summer.    That's my plan, we'll see how my body responds!

I realized this week that I haven't had any sort of routine in my life since December 15th.  4 months without any order or structure, without being able to plan anything or organize anything, and it is really starting to wear on me.  I know that all of these thoughts and feelings, physical and mental, are cumulative and all jumbled together and I'm okay with that.  I'm just at a place as well where I want to document and note how I feel, just for journaling's sake and in case anyone else is going through something similar, looking for common ground.

So, three more times of the mask, three more days of chemo pills, three more trips to the proton center.