the state of my noggin

Okay... we saw an awful lot of doctors yesterday and Monday and we've devised a plan for the next month or so.  I'll start a few weeks ago and end up with what I've decided.

The disease has formed two structures in my head (and that's been the case since the beginning).  There is the tumor itself, which is solid anaplastic astrocytic tissue.  That's the scary/bad part.  Much larger and next to it is the cystic part, which is just fluid.  The cyst is big and there isn't really a lot of room to have a lot of fluid.  My head was filled to capacity before all this silliness.  So, the cyst can put a lot of pressure in my head.  If my brain tries to escape from my head, it's all bad.  It's like being hit in the head with a baseball bat extremely slowly... like... weeks or months.

Anyway, a few month ago I had an MRI and it showed a little bit of growth of the cystic part.  I wasn't particularly symptomatic, so we decided to wait and see.  Over the next two months I had trouble with my fine motor skills on my right side.  My handwriting went from chicken scratch to almost being unable to write at all.  I had to concentrate to coordinate my left and right sides for example to walk.  All of these things were slowly progressive, so I kindof knew what was going to happen.

My next MRI showed a small amount of size increase of the tumor (1cm -> 1.2cm) and the cyst has grown significantly, accounting for my issues.  

If you're a budding radiologist, this should tickle you.  The white part is the tumor, the bad part.  The grayish balloon looking thing is the cyst.  It's causing my problems.  If you look, you you can see it's pushing everything out of it's way.  The ventricals (the dark areas) have collapsed, and it's even taking up more than it's half.  It's like an annoying bedfellow, except it comes with Broca's Aphasia.  So it's even more annoying.  I bet it snores too.

So, I talked to the radiation oncologist, my oncologist, and my neurosurgeon in the middle of June and we came up with a tentative plan.  We would zap the tumor to stop its growth with radiosurgery.  A week later they would plan to drain the cyst.

The radiosurgery was pretty mild.  I think they crushed my supraorbital nerve with the head gear... I'm still numb, but it's slowly getting better.  Talk about experiencing your anatomy class!

In the neurosurgery they put in an ommaya, which allows them to control the amount of fluid in the cyst without doing major neurosurgery each time.  I call it getting my oil drained because it's as easy as them sticking a butterfly needle into my head.  HA!

I was hoping that this would just arrest my neurological decline.  Rather, I feel better than I have in months.  I've been off of chemotherapy for the longest time since my diagnosis, so the associated fatigue is largely gone.  I feel cognitively better, physically stronger, my fine motor skill are back, my handwriting is back to the chicken scratch that it was.  God bless Loyola Med... they did a hell of a job this time.

SO... what to do now?  We talked with my oncologist yesterday and his feeling was to hold steady until there's a reason to act.  That means I'm not going to go back on any drugs (chemo) or start any new drugs until I have an MRI a month from now.  I couldn't help but feel happy to not start the new drugs.  It's nerve wracking as all get out to not be doing anything... but the energy I have and the mental clarity is not something I want to give up.

Whew.... that was a long blog.  Thank you all for your support, especially Danny and Mary back home.  My folks are driving back to WV today, and you've been an excellent support system for them.  God bless.  Thanks also to my family, Mom, Dad, and Jon who were able to come out (and Katie for her long distance support).  I love you all.

Michael

ps... here's another picture, hopefully more pretty than the one of my head.