One of the things that has injected a little fun and stability into the last few weeks has been my fascination with the technologies surrounding my condition and its treatment. I’ve learned a lot more about MRIs than I once knew, and you can now add to that MSI/MEGs, MR Spectroscopies et al. I have on CD all the studies that have been done on me, and am learning how to use dicom readers (dicom is a common medical image ‘package’ format – I’m using the free Osirix for Mac OS X) to interpret the pictures. Above, you see UCSF neurosurgeon Dr. Mitch Berger explaining to me the problematic area of my tumor from a MR Spectroscopy of my brain.

Helpful techs Susanne and Anne at UCSF’s MEG lab sat me down at the console of their Linux-based MSI/MEG machine with its racks of RF and computer gear that turned a huge magnetic field and miniscule signals from 200 sensors into a map that will likely keep my motor centers intact while surgeons, chemotherapists and radiation specialists have at me for the next 4 or 6 weeks.

So, tonight we embarked on a low tech exercise using Google spreadsheets to try and see if there is any connection between the frequency of my (so far) mild, local/partial seizures and the ever-changing anti-convulsant cocktail that I’ve been prescribed. It’s not perfect – I can’t remember every seizure, but it’s a start. After an ER Neurologist and a UCSF Neurologist did some ad hoc triage on my meds, I’ve recently been handed off to Dr. Tina Shih, the seizure specialist at UCSF’s world-class Epilepsy/Seizure clinic.

She said, as had Drs. Guisado and Cuneo before her, that anti-convulsants are an imperfect science that involves a lot of cut-and-try. One of her jobs is to get my meds into a configuration that will be compatible with the likely, upcoming chemotherapy – perhaps the spreadsheet will help her spot some trends. Dr. Shih is very brass tacks, and brings, for me, a welcome perspective to a difficult field. We did have to go over some, um, unpleasant stuff (what to do if you sense a gran mal seizure starting comes to mind), but she laid my options out clearly, and understandably. I really like my team at UCSF so far. Smart, knowledgeable people who express themselves in a straightforward way…

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