Quick non-update

After my last radiation and follow up appointment with the radiation oncologist on April 20, Jason drove me home to Lubbock where I've been since. I've been able to get some things done around the house, I got to see Aidan play tennis (I'd never been in town since he started playing), I've been able to see lots of people, I've gone to work most days, and have been able to spend time with my family. I think I'm finally over the post-treatment hangover because the nausea has dissipated, I'm sleeping well, and the fatigue and brain fog are slowly getting better.

Regardless of the fact that we've received a letter stating the the proton radiation was covered and the proton center was told on a recorded call that it had been approved, we are still getting denial letters from the BCBS claims department. I've been assured that we will get it worked out even if we have to take them to court (which I will do if necessary). 

I go back to see the neuro-oncologist on May 9. We are scheduled for a scan and a follow-up appointment to examine the scan and decide what to do next. (As a side note, the preapproval for the scan was denied by insurance for some reason-- cue eye roll). The team has already said that I will probably go on a monthly maintenance dose of the original chemo, Temozolomide. However, as the patient, I also get to weigh in (of course). I'm hoping that, whatever we decide, I will be able to be in Lubbock more and only visit Houston every 4, 6, or 8 weeks. All of these decisions seem to hinge on that next scan. As usual, we are back to living scan to scan as well as from one insurance denial to the next.

The radiation oncologist suggested that I wait at least six weeks for the tissue to heal before I go back to see the neuro-opthamologist for the prism (peli) glasses. On the way into my last appointment with the radiation oncologist, I ran right into a metal pole because my support person was not walking on my left side. His response was, "What are you doing?!" When I pointed out that he wasn't helping me, he said he didn't expect me to run into a pole. Yeah, well, I didn't expect that either. Some of my other support people are ready to review his job performance and suggest a 30 day follow-up evaluation. The incident must have had an effect because since then he's walked on my left, held my hand crossing the street, and warned me of obstacles. I guess he doesn't want to be fired. After all, this job of taking care of me pays so well and includes other obvious benefits like my companionship and appreciation. 

The only significant news I have is that my platelets were way up at last count. My white blood cells were seemingly on an upswing before we left Houston, but had fallen again as of last week. I'm still trying to gain weight by building muscle mass. I guess it's going OK but I have no idea if it's working. I had to buy shorts in the juniors department (don't hate). 

So, I have a week before I have to be back in Houston and for now I will only need to be there for 2 or 3 appointments in a single day. It takes so little to make me happy these days. As soon as I know more or have some news I will update everyone, but there just isn't much to share right now. I figure that's not such a bad thing!