UCSF Neurosurgery administrator Sara Gerrity called today with news: after reviewing the MRI, MSI and Spectroscopy, Dr, Mitch Berger has decided to remove my tumor, using a procedure called a right frontal craniotomy with stealth navigation and motor mapping. This will happen as soon as Wednesday, and we need one more MRI leading up to the operation. Now that I know the news I'm both relieved and apprehensive - relieved that the surgeon thinks he can remove the tumor, and apprehensive because this is, after all, brain surgery (though we have a great surgeon at a wonderful facility). Best to move forward, get this done, and get on with life... 

Posted by: Chris Gulker

One small victory on the so far confusing and oft-disheartening road since the brain tumor showed up. I blogged it, publicly, I was so pleased... this was the spectroscopy study I though, which should indicate what kind of tissue is in my tumor, but turned out to be a high-res MRI plus a spectroscopy - nearly 90 minutes. 
 
The GE Signa is 60 cm in diameter - a bit less than two feet. A bit tight, but not as tight as the space above my head in my home built practice contraption used as part of cognitive therapy. I breathed slowly, in sets of 6, and counted off the time - 3 sets of 30 minutes while the MRI thumped, buzzed and crackled as magnetic gradients swept the wiring in its super conducting 1.5 million Gauss magnet. 

Posted by: Chris Gulker

So, today we spent about 3 hours doing an MSI, or Magnetic Source Imaging study. The MSI maps sensory, motor and cognitive areas of my brain to a space that can be mated with a MRI to show where important areas lie. The MSI machine is blessedly open (see MRI, below) and mainly consists of a kind of open helmet-shaped aperture in a machine: the patient lies on a gurney, unenclosed, with head wedged into said helmet-shaped device. You are shown pictures and name them, aretold nouns, to which you try to mate a verb, are equipped with little pneumatic plungers that tap your fingers, toes and lip and you have to press a button a hundred times with each hand. I was told I did a good job of keeping my head still, even when I had a brief, mild seizure in the machine. Tomorrow is the spectroscopy - 45 minutes in a closed MRI: I'll be continuing my practice this evening and tomorrow. 
 
After the MSI I went up to neurology, and Dr. Cuneo was kind enough to squeeze me in and talk to me about the more-frequent seizures. He said the new seizures were likely the result of my medication change, and upped the Dilantin again (darn). Back to wobbles, at least until we see if the Keppra can do better once it kicks in. 

Posted by: Chris Gulker

They're mild, but I've now had 4 since Saturday morning. Interestingly, they eem to be happening around 10 AM and 5 PM. I'm wondering if this is due to the medecine change in progress, or I'm entering some new phase with the tumor. 
 
A 3-hour MSI is scheduled tomorrow morning, to map my motor and sensory centers in the brains. Next up is a spectroscopy, to try to discern more about the nature of my tumor. 

Posted by: Chris Gulker

After a 6-day hiatus, I had two very mild seizures today. One while walking with my spouse in Stanford's Academic Preserve, and the other about 5 hours later while we were visiting my dear but nearly catatonic father-in-law. I'm not sure Linda even noticed the second one - neither lasted more than a minute or so and mainly consisted of twitches in my left wrist and arm.  
 
My neurologist has bee transitioning me to Keppra from Dilantin this weekend. The Dilantin has serious effects on my mobility, I stagger while walking, and doesn't seem to get beyond barely-therapeutic levels in my bloodstream, even when taking 600 milligrams a day. Transitioning from one anticonvulsant to another is a bit tricky: you can't just stop anti-convulsants without risking something called epilepticus staticus, a state of near-constant seizures. 
 
Instead you ramp the new drug up, then slowly ramp the old drug down. I'm up to 1000 mg of Keppra, and down to 400mg of Dilantin. Mercifully I'm walking better, but have been hit with a couple of very drowsy afternoons, possibly due to the Keppra. Hopefully the seizures will continue to be mild and infrequent on the Keppra. Worth a try: at the moment the meds are affecting my quality of life more than the brain tumor. 

Posted by: Chris Gulker

Our neurologist discouraged jogging - hyperventilating can lower the barrier to seizures - but said walking was good, as much as we wanted. So Linda and I visited her father, sadly much diminished and under hospice care, and then set out on a 3-mile walk through Woodside's rural lanes. 
 
About a mile and a half into the walk, my left arm began to spasm: a new seizure. This one was mild - Linda said she wouldn't have noticed initially if I hadn't told her. The seizure lasted for 90 seconds, Linda estimated, though it felt longer to me. She had me sit down and stopped passing bicyclists, asking for help. By great good fortune, a regional park ranger happened by and stopped. As I gained my composure, we decided against a 911 call and asked for a lift back to our car, which the ranger, a young woman quickly agreed to. Linda, Cassie and I somehow squeezed into her pickup truck. 
 
After making sure I was OK, she dropped us at our car and we drove home, even stopping for groceries on the way. Seizures are just starting to be a way of life, although this one came after a longer interval (it's been 4 days since the second, which followed 2 days after the first) and was, like the 2nd one, mild. A call to the on-call neurologist at UCSF produced a demand for my Dilantin blood level. A call to our local clinic put us in touch with Linda's physician who happened to be covering the weekend, who thought Sequoia Hospital's ER would be the quickest way to get a blood test, landing me in the 3rd ER and 4th Hospital in a week. 
 
My Dilantin was at the low end of the therapeutic range, so I was bumped up slightly, pending a consult with Dr. Cuneo, the neurologist I saw at UCSF last Thursday. The Dilantin already has visible side effects - I walk noticeably less smoothly at the current dose, and the focus point of my eyes seems to have changed (both noted in the Dilantin literature). At the moment, I have the worst of two worlds: the Dilanatin is not yet stopping the seizures, while I'm experiencing side affects. Yuk. 

Posted by: Chris Gulker

One of the hardest things about this whole episode, has been taking an MRI, as silly as that seems. While I was in the ER after the first seizure, the consulting neurologist, Dr. Quisado, said I would need to have an MRI. My wife, seated at the foot of the bed, where she could see the LCD displaying my vitals, noted that my blood pressure climbed 20 points, and she wasn't surprised. 
 
A little background: when I was 18, I began having panic attacks. I was away at school, and afraid to tell anyone about them. That summer I told my mother, who had me see a doctor who said not to worry about it. In coming years, the attacks would come in clusters and and then go, seemingly at random. After a lull of a few years they came back while I was a young adult working in Los Angeles. They grew so frequent and vivid that I twice wound up in emergency rooms with a hammering heart, hyperventilating. it became hard to leave my small house in East L.A.: almost anything seemed to have potential to trigger a panic attack. 
 
Finally I tried to get help: somehow I was hooked up to a panic disorder councilor who explained the whole problem: sometimes, for reasons unknown, our perfectly normal fear reaction gets triggered by a non-dangerous occurrence: standing in a high place, driving on a freeway, getting on an airplane, being in a crowded elevator and other situations. Almost as soon as I learned what it was, I began to make progress. By the time I met and married Linda, I was nearly free of symptoms. 
 
I had mastered what are called high-frequency situations, things that happen frequently, and are relatively easy to work on. You take baby steps confronting the feared situation slowly and on your own terms, until you're comfortable with the situation, which is called mastery. 
 
However, we are rarely called to squeeze into coffin-sized devices. This is a low-frequency situation, and you can't exactly ask an MRI center to close down and let you practice on their multi-million dollar machines. The first time I tried to take an MRI (ordered by my internist for the shoulder weakening problem) I felt the panic rise as I slid under the machine - and that was a so-called 'open' MRI. I asked the operator, skilled in working with claustrophobics to stop. I knew that experiencing a panic attack would sensitize me to the experience, which would take a lot of work to overcome. 
 
Next stop was our family therapist, who recommended a cognitive therapist: cognitive therapy focuses on changing behavior rather than analyzing the reasons behind it and is thought to be a very effective form of therapy for phobias and other disorders. I worked with Dr. Diane Strachowski a Stanford affiliate. She reviewed my history and helped me set up a program - breathing exercises to control anxiety and panic, relaxation exercises and then a program of slow confrontation and confidence-building. 
 
First step was using broom poles, a 4x4-foot sheet of thin plywood and strong cabinet-maker's clamps, purchased for about $70 at the local hardware store, to build a low canopy over the 150-year-old bed (a family heirloom) in the guest bedroom. I started with about 18-inches clearance and practiced lying under it while breathing in a cycle of 3 long, slow breaths followed by 3 regular ones. In time I modified it by tacking black construction paper to the underside, to make it look less like wood, and eventually lowered the plywood to 12 inches - about 4 inches from my face - while practicing the breathing technique for longer and longer periods. 
 
Meantime I worked from materials prepared by Diane and a manual called Overcoming Specific Phobia by Edmund J. Bourne, Ph.D. Eventually I got up to an hour under my makeshift contraption. 
 
And now, here I was in the ER, being told that I was experiencing seizures because of a mass in my brain, and it was the thought of an MRI that was scaring me. Yikes. 
 
With work, travel et al., I figured I'de done about 6 of the ten weeks recommended by Dr.Strachowski: and now I was being told that I urgently needed an MRI. My anxiety climbed, I began to fear that I wouldn't be able to do it. Dr. Quisado found an open MRI with sufficient power to get the detail he needed. Dr. Strachowski scheduled me for a visit the following day, and, after reviewing my progress and fears, countered that she thought I was more than ready. She said, under the circumstances that I could take a sedative, just to insure success under the circumstances. 
 
The next day, I had a second seizure, this time at home, and wound up in Stanford's emergency room. The MRI came up again: it was clear this needed to be done. 
The MRI was scheduled for Friday. On Thursady Linda drove me down to Los Gatos to look at and acclimatize myself to the machine - I wanted to do everything I could to make this work. I was hoping to get on the gurney and slide under the machine: unfortunately, while the machine was free, it's 700,000 Gauss magnet was energized, and we could only view it from the control room. My heart lept when I saw it, though: the gap appeared to be nearly 2 feet - much wider, and less claustrophobic than my practice space. Feeling more confident than I had for days we returned home. 
 
The next day, braced by training and sedatives, and with sweet spouse Linda sitting nearby, the operator made the MRI studies, cleanly, in 45 minutes, without a problem. I nearly dozed off in the machine. 

Posted by: Chris Gulker

Second seizure today. Much milder than the first, it happened while I was talking to my wife on the phone. She had fretted about leaving me, and this really shook her up (me too).The nurse at Stanford ER (I was working at home today) told me seizures were normal for a brain that was being irritated by something.  
 
I jogged this morning - 4 miles, for the first time since the first seizure and being put on Dilantin. The Dilantin makes limbs feel like you're drunk, even though the mind is clear. I can actually jog better than walk, for some reason. 
 
The doctor told me that it was clear that the Dilantin wasn't masking the seizures. Another doctor said she thought there were better drugs for the kind of seizure (a focal point seizure) I'm having. Meanwhile we decided to move up plans to check in to UCSF's well-regarded neurology department. Unsettling, but I'm trying to cope... 

Posted by: Chris Gulker

I was sitting at my desk today, finishing up a FAQ for Adobe customers, when I reached for the phone to ask the legal dept. a question. Before my hand got to the phone it shot up, in a clench so tight as to be painful, and then went numb. 
 
Flabbergasted, I tried to stand up, staring at an the arm that was completely out of my control. The arm promptly went into spasms, my knees went weak and I somehow slid to the floor. I crawled to the doorway and said 'Help!' to a deserted hallway: Instantly 3 Adobe colleagues appeared from their offices. Two ran back to their phones while a third came and asked me what was wrong.  
 
At this point there was a wild feeling rippling up and down the arm, massive muscle contractions I thought. My heart was hammering and I was gasping for breath. Strangely, when I looked at the arm it was still clenched so tight as to turn the fist pale white, but otherwise motionless. Colleagues, on the phone with San Jose emergency dispatch began to shout questions: "What hurts?," "Describe the pain," "The left arm?" The pain began to reside, the arm started to unclench, my colleague on the floor took the arm and began to try and calm me down. 
 
Paramedics were at the door in an amazingly short time. By then I'd caught my breath, and realized my arm was about as good as new only minutes after the event. I say about, because I've had a problem with that arm for about 4 months now. My doctor suspected a pinched nerve, and orthopedist suspected tendonitis and sent me to physical therapy. 
 
The physical therapist said that I had some muscle atrophy, and recommended a I see a neurologist. In the meantime, I noticed, on our daily 3 and 4 mile jogs, a weakness in my knees. I went back to the doctor, who took me off the statin-based cholestrol medecine I was using, and recommended I see the neurologist. That neurologist's appointment is scheduled for next Wednesday - the first open appointment in his practice. 
 
Meanwhile, the paramedics told me that it didn't look like stroke or heart attack - they'd put an EKG on me, taken blood, listened to my heart and done some cognitive tests. They decided to take me to the hospital anyway, even though I was beginning to look fine. At least some of my symptoms seemed to be my panicked reaction to the event. I began to feel very foolish.  
 
As they wheeled me away, my colleague Dave Stromfeld asked me for my wife's phone number (good thing since I don't think I ever updated it to her new job with HR): I fumbled for my cell phone (I hadn't yet memorized her office number, and, any way, everything's on my Treo) and read the numbers as I was wheeled away. Dave later came and waited with me until Linda arrived from Belmont. 
 
Make a long story shorter, I was admitted, and soon thereafter Linda arrived. The emergency room physician ordered Dilantin, an anti-seizure medecine after consulting with a neurologist. There after we had a CT scan, and were told that I had a calcification in an area on the right side of my brain. To be continued... 

Posted by: Chris Gulker

So I blogged this LAN weblog on our Mac OS X serve as the world's most secret blog, and noted this could become my diary. Given recent circumstances, this might be a good idea - a place to write (read 'wor through') some issues that have overtaken me in the past few months... 

Posted by: Chris Gulker

We've fired up OS X Server after a hiatus. We were unhappy with our failed attempt to make network log-ins work, so we opted for easier-to-use technologies, like NAS and embedded print servers. We're back and poking at OS X Server again... thought this is clearly not AppleShare of old.  
 
There are pretty admin utilities, but the underlying complexity has not been tamed, and some things, like the DNS admin, appear to be just broken. Anyway, a new investigation has begun... 

Posted by: Chris Gulker