Don’t look now . . .

. . . but I think the captain just jumped ship. But I get ahead of myself.

Cecily and I spent the last two days in LA. Yesterday with the neurosurgeons who performed my spinal surgery. They removed the staples from my back and seem to be genuinely impressed with my rapid recovery from the cord compression and subsequent emergency operation. Under persistent questioning they reiterated that I could continue to expect improvement in lower limb function for up to one year, but stopped short of promising that I would return to normal. Of course in today’s litigious world, I don’t believe that I could get them to promise that the protrusion in the middle of my face is in fact my nose. But honestly, I feel that it will only be another week or two before I’m able to jettison my walker and graduate to some sort of a cane. And from there, well, the Winter Olympics are just around the corner . . .

Today we saw the medical director at the chemo factory. Remember how I was the rock star there not so long ago? Well, it seems that it only takes one tumor to flare up to be relegated to the position of one-hit-wonder. And so I was essentially handed my guitar and told to move along. At least that’s the way it felt. While they used to fight to keep me in their clinical study, I am now free to seek access to the same drug in Santa Barbara under a “compassionate use” program. The medical director stated that he thinks the Trabectedin is no longer working for me, but I think we need to see proof of that on the next CT scan.

So even though the captain may no longer be firmly in command of the ship, the crew still is and onward we shall sail.

And by the way, it turns out that this latest tumor began in the vertebra, not adjacent to it, so it supposedly is difficult to detect on a CT scan. Much better to image on an MRI. So why have I been undergoing CT scans on a regular basis rather than MRIs???? The answer to this appears to be rooted in the cost of CTs vs. MRIs, and how frequent the drug sponsor wants feedback, and well . . . potential conflict between what’s best for the patient and what’s best for the clinical trial. More investigation into that later . . .

In the meantime, I’ve been asked to seek radiotherapy for the lesions that remain in the vertebra. Not real excited at this prospect. And it turns out that a patient cannot do chemo and radiation concurrently, so some scheduling will be necessary. Not that I’ll mind taking a break from chemo. By the way, I think that is what was causing the blood in my urine as that has now resolved after being off of Trabectedin for seven weeks.

On the positive side, I now have a fully executed DMV application for a disabled parking permit – kinda’ looking forward to using that as necessary. And I’ve received a few comments on my pre-shower photo, comparing me with various celebrities of sometimes dubious distinction. So next time you’re in Southern California and think you see Pat Riley, Charles Manson, Jack Nicholson, or Nick Nolte emerging from a car with a disabled parking sticker, be sure to wave – it might be me!