Fierce Ambivalence

"But Roseman had also spent a sleepless night, brooding over the Perry Mason television show the evening before, which his wife was fond of but toward which Roseman cherished a fierce ambivalence, wanting at once to be a successful trial lawyer like Perry Mason and, since this was impossible, to destroy Perry Mason by undermining him."
Thomas Pynchon The Crying of Lot 49
I had my MRI yesterday and saw my neuro-oncologist.  After standing for over an hour on a combo of MUNI buses headed to China Basin (hacking fellow passengers everywhere - anyone seen Contagion yet?), I arrived late for my MRI.  They pushed me back forty minutes but were able to get me in.

For the record, I think I'm going to request China Basin for the rest of my scans.  After being in the system for close to a year now, one starts to notice that all offices have a personality and the China Basin office is efficient, human, and helpful.  Maybe it helps to work in a new facility but whatever the reason, my scans there have been routine and uneventful which is just how I want them.  I spent the 45 minutes in the tube trying to envision what the multiple cross-sections on my brain were going to show.
I caught the shuttle up to the Parnassus campus and met Steph in the neuro-oncology/neuro-surgery department on the eighth floor.  The view from the waiting room has to be one of the best in the City - Golden Gate Park is right beneath you and unobstructed views from bridge to bridge.  Yesterday, you couldn't have seen your hand in front of your face as the entire vista has socked in with thick fog.
First, as always, the good news.  My tumor does not appear to have grown or spread.  Comparing from a scan from last January, Dr. Chang was again able to identify areas that looked better - areas where the tumor appeared to be compressing other areas of my brain less, areas where the tumor mass looked slightly smaller.  Yet again, she stressed that this was impossible to measure.  Neurologists (and patients) want this measurement - you have a 2 cm lesion in the left parietal lobe - and I am left out of this standard aspect of brain tumor lingo.
How big is your tumor?  Umm, kind of hard to say.  Let's just say extensive.
Where is it centered?  Hmm, very uncentered.  Left parietal lobe, left occipital, temporal and frontal lobes extending to involve the body, genu, and splenium of the corpus callosum.  Also, the right frontal, parietal, and occipital.  That just about covers it, which is to say that it's everywhere.
Dr. Chang said all the doctors in the department can identify me just from my scans.  She also said that my tumor, while startling extensive, seems to be content at the moment to peacefully coexist with my healthy brain.  The tentacles of the astrocytoma have an extensive reach, spreading out like kudzu in a southern forest while leaving the trees relatively untouched.  
All this is good news and somewhat surprising.  My tumor has been this large and extensive for close to a year.  It has not grown and my symptoms haven't worsened.  I've tolerated the chemo therapy relatively well even if my body has grown less so the longer I've been on temodar.  I've started my last cycle of temodar on the study protocol and then Dr. Chang recommended giving my body a break from the chemo for a little while and simply monitor the tumor with MRIs every three months.
We discussed the possibility of other treatments and entering another clinical trial but as we suspected, it will be hard for me to qualify for another trial.  Firstly, most trials are designed for grade 3 and 4 cancers.  So while my cancer has aspects of these, the fact that is not replicating rapidly means I don't fit the study protocol.  As long as my cancer remains where it is (which is absolutely what we want), the only reasonable next step would be radiation which again, I would like to avoid for as long as possible and my doctor doesn't recommend until we see a change in the tumor or I have a change in symptoms.
I confirmed with Dr. Chang that my cancer is rare - extremely rare - as in fewer than three-hundred documented cases in medical literature.  Gliomatosis Cerebri.  Since it is so rare, next to no research is focused on it.
So, I'm left feeling ambivalent about my appointment.  I'm relieved and thankful that my cancer doesn't appear to have grown and I feel a bit powerless in that there appears to be no clear next step.  When it comes to the culture of cancer treatment, there is so much talk to fighting and attacking - one feels treasonously passive if you aren't involved in full frontal assault with all guns blazing even if prudent reconnaissance would be the smartest move. 

Of course, taking a break from medical interventions doesn't mean doing nothing.  Part of the reason for returning home was to focus on health in broadest sense.  The challenge that is being asked of us is to embrace this uncertainty and learn to live with it.  I'm still working on that but I do feel that I'm learning.