February 02, 2004

***This may be a bunch of random thoughts or it may not be. I am just trying after the six months (since August 2003) to try to make some sense of this thing that dropped out of wherever and totally changed and challenged my life and the lives of those who love me.***

Since I was diagnosed with a most aggressive brain tumor in late August, pretty much all I have thought about are the treatments that might prolong my life or heal me. I know that friends and family have gone to web sites and have done research. I have had so many surgeries in my life and always have carried on doing what I had to. I have always been that way. Something's you have no control over, so you go with the flow and carry on.

The name that the medical profession gives to this cancer is Glioblastoma Multiforme and the tumor was 3 cm. located near my motor strip. It is a primary tumor meaning that it was not caused by earlier kidney cancer (that cost the removal of my right kidney...the cancer had not spread). It just formed for whatever reason. I believe it started developing a year earlier because of heavy use of a cell phone, but people just look at me funny when I say that. It's what I believe though.

So far I have been through awake cranial surgery, (awake for two hours during surgery so that a technician could make sure that as the surgeon worked, I could move my fingers and other extremities to help the surgeon know how far to go without loss of use) I don't remember very much except opening my eyes at one time and seeing legs. My daughter said I spoke to her on the phone while she and the family waited in the waiting room. I do remember at one point, I felt strangely disembodied. Think about it. I was awake while someone was cutting away in my open brain while I was awake. I don't think about often, but it's almost macabre. Stephen King, my hero, would love it.

After the awake open cranial surgery, I went through 20 weeks, Monday through Friday, of radiation therapy.

This what I went through before the therapy:

1) Assimilation appointment - measure head and design custom helmet/mask
2) Cat Scan
3) MRI
MRI & Cat Scan will be fused together to identify specific targets for
radiation.

It wasn't painful and the radiation team I had was wonderful, as are all the staff at the Wilson Cancer Center, at Strong Memorial Hospital at the University of Rochester, of course, in Rochester, NY. They treat you like people, not a disease.

Then January 12, 2004, I went through Stereo tactic Radiation Surgery which involved having a “halo” put in place so that my head would not move. By far, that was the most painful thing I have had to go through. The “halo” is screwed into 4 places in your skull. Installing it was the worst! The pain killers which were injected in 4 places burned like hell for about 15 seconds to 30 seconds a piece. Then, the screws were inserted until they “clicked”, the noise resonating within my skull. It wasn’t a long process, but I used a bunch of words I don’t normally use and the tears really flowed for the first time since this whole process began. There was no pain after 15 minutes, but the “halo” was heavy and made getting comfortable almost impossible.

The surgery was “noninvasive” and involved sending very specific “zaps” of intense radiation to where they needed to go to kill whatever was left of the tumor. So, I had to go through another dye MRI before surgery and another CAT scan, so they could be merged through the medical center computers and studied to know exactly what they needed to do.