Every social gathering - extended family, a few friends, even the neighbors - immediately triggers the question: "How are you?"
In the middle of a non-stop marathon of tests, doctor appointments, medical boards, and endless bureaucracy, I usually just answer: "Still alive" or "Survived another week." Classic dad/uncle jokes that aren't funny to anyone but me—which, in my condition, is the only thing that matters.
Quite often, behind that "How are you?" hides a new article, a drug I haven't heard of, or a new expert for my specific rare niche. I’m flooded with "life-changing" suggestions that I absolutely must look into right now! Or not.
Some suggestions are practical (and easier to digest): hyperbaric chambers, acupuncture, red or green light therapy, mushrooms, and other surprises. Others come from the spiritual realm- -surprising insights about the world, because apparently, what I need most right now is to start thinking like a rabbit: running through fields, eating grass, and convincing myself that I am, like, totally healthy. Everyone knows "imagination creates reality," meaning: "Think healthy, be healthy."
To the dismay of my dear friends who only want to help, my (not-so-polite) response is: "I might not be a math genius, but if imagination creates reality, then mine is completely warped. Maybe I’m the one who imagined and summoned this Chordoma into existence." It’s a temporary solution, but it usually keeps people from offering their unsolicited oncology "expertise" long enough to give me some peace.
Meanwhile, I’m digesting the fact that I’m headed for another surgery, which is supposed to be much smaller and simpler than the last one—just swapping the existing titanium fixation for carbon fiber.
Thanks to the "surprised" look on the face of my neurosurgeon at Sheba, we realized we needed to find surgeons who actually specialize in this specific field. Through a good friend, we reached a different expert who was very professional and decisive. We tried to be organized and arrived with everything: MRI, CT, pre- and post-op reports.
I felt like I was at a mechanic’s shop, where the new guy goes over everything the previous mechanic did, what should have been done, and "how the hell did they miss that this was Chordoma?" He immediately knew the next step, noting that only a few experts in the world perform the complex surgery of removing entire vertebrae. In my case, he said at least two vertebrae and about 40% of my ribs needed to go. This procedure is done by a specialist from Bologna, Italy, who would be happy to fly to Israel just for me (and for the hummus).
I don’t know why, but "open-back surgery" didn't exactly charm me. That expert, who was truly above and beyond, referred us to another specialist—a neurosurgery professor from Ichilov whose line of thinking really clicked with mine and Sharon’s. He argued that since you can't know what’s already spread, it's better to clean out what’s visible to the eye. And, of course, swap the hardware for carbon fiber screws. He wasn't a fan of carbon fiber—unlike me (in my head, it’s like a high-end bicycle! :) )—because it’s slightly less durable than titanium.
My radio-oncologist was also pleased with this plan. He had just moved to Ichilov to oversee the construction of the radiation facility I need (which will take at least five years in a best-case scenario). He wanted to work with that professor and was happy to get rid of all metal before the radiation treatments, which were starting to look like a trip to the U.S.
I returned to work with full force, with my amazing manager and some significant changes there. And just so things wouldn't get boring, while working with an external company in Jaffa, I found myself picking up black suitcases designed for sensitive equipment—like photography gear, or in our case, something that looked like a playground for Smurfs.
If it wasn't clear by now: I am an expert in procrastination and denial! For some reason, this time I broke my bad habit. The moment I put two relatively small suitcases into the even smaller trunk of my cool mini-car, my glasses got dirty. After the third attempt to clean them, I realized my glasses might actually be clean. I called Sharon (yes, a recurring theme) who told me I’m not supposed to be seeing things that aren’t there—in this case, a black dot that moved with me everywhere. I had to see an eye doctor immediately.
I booked the earliest possible appointment at a French-run clinic in Florentin. It felt a bit like being abroad while waiting. The doctor was more indifferent and calm than I was—until he looked into my eye. Then he forgot how to speak Hebrew. Once he regained his natural skin color, he sent me to the ER in the format I’m now used to: "URGENT!"
To make a long story short, and so as not to disappoint anyone, I showed up not with one retinal tear, but two in the same eye (one on top, one on the bottom). Up to this point, it’s not that rare. It’s just that I caught it early enough that it didn't hit the center of the eyeball, meaning my vision wasn't damaged—and that is both rare and an urgent reason for surgery "because I haven't been comfortable for six months and there are still a few months until the next big surgery."
Thanks to my primary illness and my "surgery count," I was moved to the morning (VIP) slot and got the most veteran anesthesiologist. During the pre-op tour, my turn was delayed for three hours while they debated what was allowed or forbidden regarding my condition. After an hour and a half, they realized they had no idea. It took a bit more time to reach the professor who was supposed to perform my upcoming fixation surgery; in two minutes, he cleared everything up and cooked up a solution that worked for everyone.
After the first surgery, I had spent weeks looking mostly downwards. I had learned that lying on my back was the most comfortable—both for breathing (which wasn't easy) and for complex movements like getting up. The problem started after the eye surgery, which was done with gas rather than gel (don't feel bad if you don't know the difference). Eyes treated with gas require you to keep your head down as much as possible, and in bed, that means on your stomach!
I admit that even though this was a "mini-surgery" compared to what I’ve already been through, it really hurt. But even that passed, and I got used to sleeping on my stomach. I even found a way to work on my computer with my head down. I was as ready as I could be for my next surgery.
I promised you it would be interesting. See you in the next post.




