I ended my last posting with 'for now I am coasting through this surreal normalcy.' Well, this normalcy has ended. In brief, the tumor in my cauda equina that was irradiated this past summer has started growing again, and was removed surgically nearly 2 weeks ago. The operation will be followed by treatment with Avastin.

And now for the details.

Since New Years the pain and burning in my legs increased. While I attributed these symptoms to an aggravation of my neuropathy, my ever-vigilant wife pushed for my MRIs to be moved up. So mid-February my spine was MRI'ed, and then we made our pilgrimage to the 12th floor of NIH's Clinical Center, loaded down with work and reading material, and a bag of food. The wait was not long, and two nurse-practitioners began pocking and prodding me ('pull on my arm…push me away…'). Before every visit, I develop mentally a 'probability distribution' of what is likely to be found-50% for just an increase in neuropathy, 20% radiation for a tumor in the spine, 20% for chemo, 10% for surgery on a brain tumor. When the nurses were called away before the exam was over, I realized that the MRIs showed something had changed; what I was feeling was not just an increase in neuropathy. More chemo? More radiation? Surgery? In breezed Dr. Fine with the two nurse-practitioners, an intern, and a British doctor dressed in a pin-stripe suit (he looked like a diplomat, not a doctor). After some chit-chat about GLAST: the tumor that had been irradiated over the summer had grown significantly, and was probably causing some symptoms. And other tumors were growing. The largest growing tumor needed focused attention while my whole central nervous system would get systemic treatment (e.g., chemicals that would treat everything).

Fifteen minutes later one of the neurosurgeons was in the examining room with a physicians assistant; fortunately (for me) the operation for which the surgeon was scheduled had been cancelled. The MRIs showed that the tumor in the cauda equina (horse's tail, where the nerves at the end of the spine splays out) was pushing the nerve fibers aside and was operable. Although we did not formally commit to the operation until the next day, within about an hour I went from slightly-compromised normal life (my legs are stiff, sitting for long periods of time exacerbates my neuropathy) back to intense medical intervention.

I checked into NIH just over a week later for the operation. A team of doctors would be playing with sharp knives near my spinal cord, but I was not nervous about the outcome. The surgeon was experienced and confident that I would be no worse for the operation, and I trusted him. But I was weary, tired of blood tests, pressure cuffs, trying to describe the sensations in my legs and to remember how and when they changed. I had had an operation at NIH two and a half years ago, and would be on the same hospital floor; I felt like I was retracing my steps. Because hospital stays are not pleasant, even in the best hospitals (which NIH is), I approached the operation with the discomfiture of the second time parachuting (from what I am told-I am not crazy enough to jump)-the novelty is gone, and you know when it is going to hurt.

As it turned out, the operation was a success. Only a few nerve roots, probably all sensory, were cut, and only a little tumor was left on a few other nerve roots. When I awoke I had very little sensation in my left leg and had no sense of where it was. However, the sensation is returning, and now there is only a small patch of my upper left thigh with no sensation; further improvement is possible. The nerves controlling my muscles were less affected, and within a little over a day after the operation I was actually walking! By seeing where you plant your feet you are able to walk even if you can't feel your feet (and I can feel my feet).

The incision has been healing rapidly and with little pain; I was totally off painkillers about three days after the operation. But getting my GI tract started again was difficult, and caused my hospital stay to be extended by a few days (NIH doesn't kick you out as early as a private hospital would). Here my back had been filleted and a tumor had been shaved off my spinal cord, and I was laid low by a distended abdomen.

As always, this event was harder on my family than on me. After all, during the tensest part-the operation-I was blissfully asleep while my family was in the waiting room. During the nine days that I was in the hospital my room was turned into a workshop, with Debbie painting and the boys working on their laptops. My family was marvelous supporting me and each other.

Once I recuperate sufficiently from the operation I will start Avastin. Avastin is one of the first anti-angiogenesis drugs that prevent blood vessels from growing into, and then feeding, tumors. Originally approved for colorectal cancer, it is being applied to all types of tumors; Dr. Fine has had very successful results with the drug for a different type of brain tumor (there are too few cases of what I have for a proper study). The drug is very expensive, but fortunately my insurance will cover.

At this point it looks like I should be able to start going back to my office next week, and I should be able to work around my Avastin treatments (the side-effects are not very bad). If I had been fully functional, I would have been out this week in Stanford for a meeting; instead I am listening in through a teleconferencing hookup. We hope to get to New York City for a wedding in mid-April, and to the GLAST launch on May 16.