Mornings are when the bills get paid...

In these early July mornings the humidity is like a color that covers over the air. A heavy dark feeling that covers everything. Take a picture and it would look perfect, the camera can't see what the air feels like. This is how we look forward to Next Summer. Our snapshots remember a perfect morning. These days when I wake up it's nothing but a heavy dark color. It's chemical conditioning or it's physiological reflex or it's a tangible object, to me, right now it makes no difference. It's morning and I am Sisyphus.

I can't point to anything in particular that weighs so heavy, because until I get my meds digested EVERYTHING weighs so heavily. That makes the meds the problem right? Whoever answered yes to that stop reading this blog, you lack the ability to analyze. We can argue about it another time. Cretin. These days this is a sore spot, plenty will be said in the near future.

So back to the mornings....It is what you call a picture perfect day, no clouds, mid 70's and quiet out except for a little traffic on County Line. Even the traffic fits into the picture, again with the picture. That's only 1/2 the story. The rest of the story is more complicated.

R seems to have an issue with the scar on the side of my head. It is ugly and it's only going to get worse when i start the radiation. I am trying to engage him with it, see if he thinks i should maybe get a mohawk or just some sort of pattern on both sides, but he knows that once the hair goes the scar will be standing out. When we talk about it I see him disengage from our conversation and run through thoughts, come back to us and be distracted. It takes about 1 second for that process to happen, but when he comes back he's in a different state. I don't know what to do.

M on the other hand is great with the mohawk, he suggested a mohawk-mullet. He lol'd me with that. I was thinking something like this....

Not quite my style, but neither is GBM, so lets give it a shot.

Here's a pic of one of the monsters chasing me around now...

Not sure why i have a picture of the box??? Maybe it's because it cost my insurance company $11,500.

It's all about the blood-brain barrier. Got to get the meds through the barrier to treat the tumor. Right now, aside from complete infusion Temodar is the drug of choice to get to the affected space. We are going on a study medication that is currently being used to treat renal cancer that has shown some hope in treating the GBM. I have not read  comprehended the complete study so the details are a bit fuzzy, but it appears that Temodar and Drug 2 pass through the barrier at the same time. This is why they directly overlay the treatments timing. The study still leaves me three options for Trials after the first course, (upon recurrence).

Speaking of Studies and Trials. We are all set, thank you. I understand the desire of my friends and acquaintances and strangers to want to help us with this issue. I also understand the benefits of wheatgrass to the body. But we have chosen a course, discussed it between B and I and come to the conclusion that....

1. First of all there will be no recurrence
2. Participating in the Study is important. Having an opportunity to contribute to the GBM body of knowledge is something that makes me feel good.
3. I am a technician at heart. I analyze and quantify and try to extract empirical data whenever don't understand something. Name it and claim it. No better way to do this than have highly trained medical professionals measure and treat and react and adjust.
4. I am as anti-pharmaceutical as the next person ($11,500? really?) BUT I truly do not believe that there is a motivation in keeping people sick. I believe that there is money in a cure, of course, BUT it's one step too far to believe that they would avoid a cure in order to keep sickness around. Think they wouldn't charge the $11,500 for the cure? can you spell p a r a n o i a.
5. Wheatgrass is the perfect balance of nutrition, palliative, and ameliorative ingredients.  To keep you healthy. NOT TO CURE A FREAKING TUMOR.

Sorry for shouting...it just seems pandering and dismissive for someone in perfect health to share their thoughts on wheatgrass. Rude, my family is going through this by ourselves, you go ahead and "think outside the box." I will be working with some of the brightest minds available, right here, inside the box. watching what has an effect, what doesn't and reacting to any changes that the tumor shows.


OMG how time flies. The boys are getting up and asking for oatmeal and scrambled eggs and sausage and chocolate milk. Time to get moving on the day.

Wash off the thick gray humidity, drink some coffee. Wander into the bedroom and sort out the pills for the day. (It really looks like a bowl of Lucky Charms when ready to take, marshmellow goodness!)