Diets, Insurance, Bills, and Space Camp

Things have simmered down and we are settling in finally. By the end of the week I was feeling much better and even began unpacking a few things. Don't worry-- I'm not over doing it! I totally learned my lesson. I'm definitely a new woman: I go slow; I remember to breathe; I rest when I need to; I nap (ok, that's not new); and I let people wait on me (ok, that might not be new either but I do it with more frequency). I have decided that I will have a schedule of when I will physically go to my office and when I will work from elsewhere. Obviously, I still need to get my work done but I am devoted to not showering on some days. Seriously, showering can be exhausting!

I'm learning a lot about making my new diet work and Jason has been amazing at helping me be creative so that I can have a variety of foods that taste good, cover my nutrition, and still fit within the limits of calories, protein, sugar, and carbs. I've been enjoying some yummy salads almost everyday. This morning I had a great tasting smoothie and last night I had a cheesy chicken "pizza" on flax flat bread. The way Jason toasted the bread gave me a great idea to use crispy flat bread as chips or crackers for guacamole, queso, etc. Oh, the things I can still eat! I will say that I no longer think of food as an emotional solution. Food is now 100% medicinal. I could have saved a bundle on nutritionists, weight watchers, and other random programs over the years but everyone gets there somehow, I guess.

As we've been settling in and going through bills, mail, etc. we found the bill for the brain surgery and hospital stay as well as the written statement from the insurance company that says they will be covering proton. We did not realize that we the approval in writing until today and this lifts a great weight off of us. As of yesterday I was still wondering if it was really going to happen. We have no idea how much they will pay on proton (they appear to be paying most if not all of the surgery and hospital stay) but at least we know we will be getting something back once the insurance pays for proton. Anyone want to place bets on when the insurance will get around to making things right? By the way, in case you are wondering, brain surgery and related activities did not cost as much as we thought it should-- I'm guessing we are viewing the insurance negotiated rate. I'm just not as expensive as I thought!

I know the various texts, emails, and FB messages that everyone is keyed up about the story that will air on 60 Minutes Sunday. If you are unaware, 60 Minutes has been following GBM participants in a clinical trial for several years. The trial is a viral immunotherapy trial in which doctors are using the polio virus to kill GBM cancer cells. Tomorrow (5/15) the story is about the startling success of the first trials and how the FDA is fast tracking the treatment for approval. We have known about various types of viral immunotherapy studies for a while, our friend Buddy showed me a great HBO documentary several weeks ago. In addition to the polio virus, doctors are using HIV, tuberculosis, and the common cold. The doctors at MD Anderson say that these therapies will be the cure within 10 years. I'm eager to see if the 60 Minutes episode tomorrow will imply that we are closer than the doctors thought. If you are interested, I think the episode will help everyone understand my illness and what we are up against.   

The most exciting thing is that this afternoon we will be busy getting Aidan ready for space camp in Alabama. He leaves first thing in the morning. I've never really worried about him being away from me and going off on great adventures. This time, however, I'm a bit apprehensive (no one tell him, I'm sure it's just a side effect of my situation). I know he'll have a great time and will be home in a week. I've never been one of "those moms" who cries at the bus stop (partially because he's never ridden the bus but that doesn't matter) and it's not going to start now!