Words and pictures from Silicon Valley by Chris Gulker
From the monthly archives:
This year’s porch pumpkins were carved tonight. Sweet spouse Linda did the hard work and cleaned the pumpkins (thank you dear!). Given my current reduced motor skills, this may not be the best job we’ve ever done. But this has been an important family ritual for as long as I can remember. John and Julie will be coming over to man the door tomorrow night… we usually get 50 – 100 goblins…
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Apparently, the Mars Rover designers did not anticipate their craft would endure much beyond the 90 days of the original mission plan. As both Spirit and Opportunity came up to their 1000th sol (the Mars day, consisting of 24 hours, 39 minutes, 35 seconds), engineers realized an upgrade would be necessary: the machine’s day counters would only go up to 999. Spirit, parked on a Sunny hillside for the duration of Martian winter, is already into its 1004th sol, and apparently is working fine, thanks to the upgrade. Opportunity, which is canvassing an interesting crater called Victoria, has also been upgraded – it’s 16 sols away from clocking 1000. These are probably the two coolest machines in the Solar System… pic above is a ‘self-portrait‘ of Opportunity… Image credit: NASA/JPL-Caltech/Cornell
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Judging from the number of friends, acquaintances and strangers who have relayed their experience with brain tumors, I’ve picked the right decade and place to have one. A woman in SF wrote that her oligagiloma was removed at Stanford more than a decade ago: a friend-of-a-friend documented 2 relatives’ return to health and active lives, including one person whose tumor was far bigger than what I have. Apparently, if you’re going to have a brain tumor, this is the time, and the Bay Area is the place, to have it dealt with. Very encouraging news…
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The really big news today is that yesterday, on our Fry’s trip, John and I picked up a sweet 20-inch Apple Cinema display. Linda has transitioned in the past few months from a mostly TV viewer to a mostly Net surfer, resulting in me being largely kicked off the dual G5 Mac with it’s 23-inch display.
Banished, I’ve been hanging out on a Mac Mini and a 64-bit AMD Linux box, KVM’d to a 17-inch screen. Realizing that the trend was not positive for me returning to the fast G5 and its giant screen, I snagged a clean open-box 20-inch display at Fry’s (for $50 less than Apple Store). John figured, under the circumstances, spouse wouldn’t even comment (she didn’t). Given that the other option was a $70,000 Porsche Cayman, think we all got off easy this time around.
The Intel Mini runs like a charm, and the 20-inch display supports most of what I could do on the 23-inch screen. We also cleaned up this corner of the World HQ: it was hard to retire the hand-built AMD-64 box, but OS X is my favorite *NIX clone…
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It’s Sunday morning, and a pleasant day stretches ahead. I’ve got a bunch of projects planned: some writing, a much-needed cleanup of the ‘World HQ’ and moving my secret blog to a public URL. Michael Matze, our family counselor who has helped me through past difficulties, has encouraged me to work through current trials by writing about them, including commissioning an essay.
Michael’s a smart and capable counselor: the writing has been great therapy: a good way to start processing the many bewidering events that dropped abruptly into my life beginning 20 days ago. The secret blog is where I have, on the days of first seizures, ambulance rides, emergency rooms and scary diagnoses and procedures, just poured out the thoughts and feelings racing through my mind on each respective day as I began the struggle to cope with my newly-revealed path. It’s really helped to get things out, and down in a concrete way, as honestly as I can, and then to move on, one day at a time, one goal at a time on the best course I can find.
I used Firefox to export the blog quickly in a form I could publish on gulker.com. It lacks some of the pretty graphics et al seen on the LAN. Many links point to our firewalled, non-routable private network, so, of course are broken at the moment. I’ll try to doll it up a bit, but the important stuff is the thoughts and words, starting on October 9. Offered in the hopes that others who find themselves on similar paths will find some comfort in knowing that they are not alone (and feel free to drop me a line)…
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Please know that I am all but overwhelmed by the kindness that daily comes my way in the form of phone calls, email, blog comments, mail and postcards (not to mention the wonderful meals that have shown up on our doorstep a couple times now). From (literally) Berlin to Tokyo friends and colleagues from current and former lives have sent prayers, encouragement and all manner of good wishes: this has been very welcome comfort in trying times for both Linda and I. Please understand if I can’t respond to every email and blog comment under the circumstances: know that I’ve read, and am grateful for, every kind word. Thank you from the bottom of my heart…
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Just back from a very pleasant walk around Stanford corral and golf course with faithful Australian Shepherd Cassie. It’s a beautiful, crisp autumn day, the sky is deep blue and cloudless, the oaks and eucalyptus sparkle in sunlight that is starting to take on its winter mantle as the sun gets lower in the sky, and becomes softer and more diffuse. Days like this make the ridiculous cost of Silicon Valley living worth every penny.
Today I’m juggling: I’m catching up some Adobe work, blogging a little, looking forward to a trip to Fry’s with stepson John this afternoon. Linda is on a businees trip – at my insistence. We need a little normalcy (if not a lot of normalcy) back in our lives, and, frankly, the hovering of my dear and beloved spouse was starting to get a bit much. She’s already called me 7 times since she left yesterday afternoon, and will be back tomorrow mid-day after God knows how many more calls.
Cassie the dog and I got up, made and shared a breakfast of coddled eggs and toast, and hit the trail. Breakfast time is pill time for me, and I gobbled down my regimen of anti-convulsants and the blood pressure medicine I’ve been on for a while. Usually Linda and I rise at 6:00 and go out, previously for a jog, now for a walk. The reason for walking rather than jogging is not the weakness in my left side, caused by the brain tumor, but rather the effects of Dilantin, one of the two anti-convulsants I take.
The Dilantin has reduced the severity of the focal point seizures that I experience: most of the time I just go on doing what I’m doing, at least as far as no left arm is reqired for the task. At worst I pause and take a few deep, slow breaths for the 2 minutes or so while the left arm twitches, jerks or goes numb. A couple times, I’ve had seizures so mild that even my ultra-attentive wife has not noticed.
Unfortunately, however, I’m one of the lucky guys who is on the low end of tolerating Dilantin’s side effects. After the first dose of Dilantin, administerered in the ER in San Jose, I almost fell over when I tried to stand up. Dilantin affects the motor cortex, and is very good at keeping small seizures from turning into big ones. However, it can cause coordination problems: given that I’m already a klutz, 200 mg of Dilantin makes me walk like a sailor on a 24-hour pass. 300 mg is almost comical, and a couple of times now, other walkers, spying my erratic and wobbling Dilantin-induced approach, have given me a wide berth.
Linda and I usually rise at 6:00 AM and get our walk in before the morning dose. Today I slept in to 8:00, and took the pills as soon as I had a little breakfast in me. My regimen has just changed and I managed to take 300mg of Dilantin (I was supposed to take 200, but can adjust this PM). Darn. I knew this would kick in about 20 minutes into our walk, but the day beckoned and the dog was eager, despite her near-13 years. I leashed up my loyal beast and we made our way down a short stretch of Oak Street to Sand Hill Road, and thence onto Stanford’s grounds.
A cross-country meet was in progress on the golf course: I could hear the booming PA announcements and the sharp crack of the starter’s pistol. It took me back to autumn in Ohio, when, as a student at Western Reserve Academy, I would watch the start of cross country meets, and cheer on classmates Tim Warner, Mark Weidemann and Dave Hunter as they approached the finish in Reserve green and white.
A young couple passed by, jogging smartly, as did spectators streaming in to the meet. A man perhaps 15 years my senior, driving a small electric cart and wearing a broad-brimmed straw hat wished me a cheery good morning. You go guy, I thought: let’s both make our way as best we can. Sure enough, as I rounded the construction on the new practice golf course, the Dilantin kicked in, and I began to roll and bob like a cork in choppy water. I had already thought that perhaps today I would go no farther than Campus Drive East, an almost 2-mile round trip, rather than my customary 3 or 4 miles, given the Dilantin-induced wobbles.
Cassie grumped a little at being denied the circumnavigation of Lagunita, Stanford’s usually-dry lake, and its wilder back side where she sniffs racoon, coyote and fox, I think, given the intensity with which she investigates the scene. The Dilantin demands a weird combination of rolling with it, and staying focused to keep upright: I felt it would be OK, under the circumstances to abbreviate this stroll. Lagunita’s dirt trails and steep banks present more broken ground, where I have fallen even at the peak of my fitness. We might take another walk this afternoon to bump the mileage up.
As we walked back, thoroughly enjoying the day and familiar sights like Skyline’s ridge of Redwood-covered hills as well as the air of college bustle, a seizure struck: the left arm went numb, then curled up about a foot out from my side and began to spasm gently. Cassie chose that moment to poop, so I moved off the paved trail into a deep litter of leaves: I was standing with a pooping dog and an arm that, this time, was pretty clearly doing something weird: it almost made me laugh to think what I must look like to others. When we could progress again, I wobbled on, left arm still twitching and raised to half mast as it were: mercifully, only a few people passed by, and, in a few dozen steps, the spasms subsided leaving only the Dilantin-induced stagger.
Tonight I’ll have dinner with friends Mike and Cathy Podell, Jacob and Terye Levi, their son Josh and stepson John and our beautiful daughter-in-law of a year, Julie. I may bring some wine that I’ve been keeping for a special occasion. All things considered, life could be much worse…
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Bruce Sterling’s brain/walnut analogy would seem quite apt, given the appearance of the MRI below. It really does look like a walnut in this particular image slice. Some of the other slices look very different…
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So, as promised, here is a Magnetic Resonance Image of my brain taken last Friday, October 13. The view is from below as it were, and the perspective is such that the hemispheres are reversed – that’s the right hemisphere on the left, and you can probably see a bright oval something there, wherein lies a tale.
Some months ago I began to notice that my left arm was behaving oddly. I was making more typing mistakes than usual, and I was having a hard time in the gym working the weight machines with my left. So I saw the doctor; he suspected a pinched nerve or orthopedic issue and sent me off to an orthopedist. Orthopedist suspected tendonitis, and sent me to a physical therapist. Physical therapist said she thought I had something weird going on, and recommended a neurologist, so I made an appointment.
Before I could keep that appointment, however, a very odd thing happened. Sitting in my office at Adobe, in San Jose, I had just finished typing a document and was reaching for the phone to call a colleague when my left arm suddenly convulsed into a painful contraction that froze it, every muscle tightly clenched and curled up against my chest. Wild contractions began to flow up and down the arm.
Completely nonplussed, and absolutely at a loss to figure out what was going on, I slid to my knees and crawled to the corridor and said ‘Help.’ Three colleagues appeared, 2 headed for the phone and one came and tried to calm me down. By now I was hyperventilating and completely freaked out. The contractions begin to reside, San Jose Paramedics arrived, and some 6 hours later, in the E.R. at O’Connor Hospital, I was told that I had just had a seizure, and a CT scan was showing a mass in my brain. Sixteen days, 3 ERs, 4 hospitals, MRI centers et al. later, I now know that I probably have a tumor called a glioma, and will soon undergo a procedure at UCSF known as a right frontal craniotomy using stealth navigation and motor mapping. I had thought the blog was a little dull lately, so here ya go… more TK…
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A while back we decided to do something about the drifts of paper that tend to collect, over and over again around gulker.com’s ‘World HQ.’ No sooner do we dispatch one batch of mailed and faxed documents, but another one seems to spontaneouly grow. Finding these documents, on those rare but vital instances when some communication from the bank or insurance company or DMV or house remodel contractor is important, can be a nightmare of looking through drawers, filing cabinets and boxes in the garage. This is especially true when the documents are some months or years old.
So we started the Paperless Project a few months ago. Everything that comes in that isn’t already a PDF or email or other electronic file format (which all get converted to PDF) now goes through a fast Fujitsu ScanSnap, then onto a Mac Mini where it’s processed by Adobe Acrobat Pro 7 (for OCR, rotation issue setc. ) and then into a collection on the HD that’s managed by yep (’iPhoto for PDF’). The whole thing is backed up automatically to an array of inexpensive NAS drives by ChronoSync and Apple’s Backup (not really paranoid, just evaluating both products).
So today we discovered that one of the many pieces we ordered for our in-progress master bedroom/bath remodel – a French door from Kolbe & Kolbe in Wisconsin – had arrived without its hardware. A quick search on ‘remodel’ in yep produced the confirmation-of-order form (a fax) complete with all the names, phone numbers and order details that I needed to get the ball rolling on replacing the hardware. If this had been a piece of paper I would likely still be sifting through folders trying to put my hands on this 6-month old document, amidst hundreds that have rolled in during the time frame…
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