Im Westen nichts Neues

Dr. Walter is also adapting to the new UCSF data entry system

This post may be a bit scattered as I feel unable to marshal much focus to write.  I'm feeling drained.  After feeling strong for the two weeks since surgery, I came crashing down yesterday with a splitting headache and nausea that kept me horizontal until six in the evening. This is pretty normal post-surgery but it is still unpleasant and disheartening since I felt like I was clear of these symptoms.  I'm feeling better today but still fighting some queasiness.

Steph and I went the radiation oncologist on Monday (Happy Birthday!) and we talked for about an hour about my next phase of treatment.  We both felt like we had a frank conversation and were satisfied, if not exactly pleased, with the conclusions.  It is strange that I have spent the last twenty-two months trying everything possible to avoid radiation and now I feel like the time is right to do it.  It felt right that I should hold out until there was a definitive change in the tumor.  That day arrived last Wednesday when the tissue pathology showed that the tumor had gone from a grade 2 to a grade 3.
I feel more comfortable with our plan for radiation this time.  After hearing our concerns about whole brain radiation, the doctor suggested a more limited approach.  In almost two years of observation, a relatively small area of the tumor appears to be active. The problem is, it is impossible for an MRI to tell you precisely what is happening with the biology of the tumor.  Through surgery, my doctors have been to sample only a small part of what looks to be the most active area.  Because my tumor is so diffuse, the original plan was to radiate a very wide area.  I accepted that this might be necessary but I was never comfortable with it.  This radiation oncologist described this approach as "burning down the barn to get rid of a mouse" and that resonated with me.  So, she suggested that we might be able target a more limited area, the area which has appeared the most active from the beginning, and hopefully avoid some of the more severe side effects of whole brain radiation.  Of course, there is a risk that this approach might miss an active part of the tumor that is not showing up distinctly on the MRIs.  It is a tradeoff and there is no clear right answer.
I'm waiting to hear more after the tumor board meets today but as of right now, I'm preparing to go forward with this approach.  This will mean a CT mapping scan which will matched-up with my last MRI for precise targeting.  Then being fitted for the dreaded custom made"radiation mask" (think Jacques Plante) which I'll have to wear during the daily radiation sessions for the next six-weeks.  I will also take a daily dose of temodar the same chemotherapy agent I took for a year after being diagnosed.
So, how do I feel about all this?  I've been searching for the right metaphor to describe it.  It has become part of our language to speak of "beating" cancer but I don't feel like this is an honest approach even though I am a born optimist.  With very few exceptions, such as when a complete surgical resection is possible, no one beats brain cancer.  You fight to prolong your life, maintain the quality of your life, and to do so with dignity.  It all involves a series of hard choices and imperfect tradeoffs.  
I feel more like an infantryman peering out from a trench in a hellscape on the Western Front.  Not really any good options to choose from here.  Keep going, don't lose your head, and remain your true self no matter how grim things appear.  I am motivated to be a good father, husband, son, brother, colleague, and friend for as long as I can despite the odds.