Latest news April 2009

Hey all,

Thanks again for all of the support - it has really been tremendous and has kept my spirits high. I wanted to write a quick update as I've not actually written on the blog where we're at with everything.

So...the diagnosis all along is that we think the tumor is a lower grade (with some higher grade components) but it is really big and I've probably been living with it for quite a while. Like 5-10 years. Its weird to think that I've had cancer for such a long time - kind of changes the perspective a little for me and is interesting to think about. When I was first diagnosed with brain cancer I was acting a little like I was going to go any minute. Thinking about my mortality frequently and even making sure Becky knew where to find passwords to pay certain bills and stuff. We're taught to think of brain cancer as a 2-6 month type of situation and many are. Many primary brain tumors are typically very aggressive. Mine has some aggressive components to it but I've been living with it for a long time. Of all the brain tumors I think this one is the best to have.

*BTW - anything I have ever done to any of you which was unkind, ungrateful, or anything else was because of the tumor. I apologize on its behalf.

Anyway, the treatment plan has been really complicated to come up with because the standard way to treat this normally would be to do radiation therapy (RT) and chemo therapy to begin. But, the fact that the tumor is so large (the entire right frontal lobe, and stretching across the the midline into the left a little) means that we'd have to radiate a boat load of my brain. This has really made me uneasy from the beginning but how does one choose between survival and side effects?! Difficult.

My radiation oncologist was nervous about this all along and made it very clear at the beginning that he was going to get as many people involved in the case as possible. Because the standard of care is to radiate it eventually won out and we prepared the radiation mask and everything and were ready to go.

BUT...in breaking news, I received word of an opening in the neurooncologist's schedule at UniversityHospital on Friday. We talked in depth about my situation and I think everyone in the room came away feeling like the downside to beginning with just chemo is minimal. We'll get to see how the tumor responds to treatment and hopefully shrink it to the point where if we do have to radiate we'll have much less surface area to deal with. It is unlikely that we'll lose critical time by not radiating to begin. Nothing is for sure and part of this is science and part of this is "feel" so lets all pray that this thing responds well to chemo.

It is interesting because I feel much better about this. I think I have a resonably good gut feel for things and this just "feels" better. We'll see.

The chemo I'll be starting is called Temozolomide and is taken in pill form so I'll be able to do chemo at home which I quite like.

I will likely start next week. I'll do 5 days on and bout 25 days off for about 6 months. We'll be taking MRIs frequently to stay on top of it.

Thanks for reading and for your support. Go Heels tomorrow night in the National Championship!!