From the moment my "new friend" got a name, I tried to focus on recovering and sticking strictly to the cocktail of medications I received from the pain clinic at Tel Hashomer Hospital. In practice, this meant that every week I would drop about half a pill of each kind—mostly morphine and its lovely cousins. It also meant that the day after each dosage change, all hell broke loose. The pain would flare up in a way that vividly reminded me of the day after surgery, only this time I was more focused. A day after the "cursed day," things would return to normal, which made the withdrawal process from the heavy stuff a bit easier. A month after surgery, I was already down to the lighter stuff.
Despite everything, we couldn’t stop ourselves from reading and asking everyone we knew about this new roommate: Chordoma. We quickly realized there wasn’t much info out there, let alone local experts. In Tel Hashomer, no matter who we consulted, we always ended up with the same name. Outside of Tel Hashomer, there were very few names at all. I learned that an oncologist (a profession I’m familiar with) is important, but what I actually needed was a Radio-Oncologist (a new term I hadn't really met before).
So, we booked an appointment with the "One and Only," which is also the day we discovered the meaning of "Oncological Scheduling." We were invited for 12:00 PM, only to realize that being seen at 2:00 PM isn't considered "late" (which is exactly what happened). From there, it only went downhill. But to the credit of every doctor in the oncology field, the delays stem from a genuine desire to help, to hear every single detail, and to support the patients in the difficult situation they’ve found themselves in.
To this day, there’s one sentence I remember from that long meeting: "There’s no time pressure with you, but you’ll probably be my most complex patient." I didn't fully grasp the implications of that sentence until much later—I'll get to that eventually—but during that first meeting, I still kept my "cool" exterior. For the first time in my life, my cynicism was toned down (it was a heavy meeting, to say the least).
Naturally, we arrived with a mountain of tests: CT, PET-CT, MRI, and more. I discovered different types of scans and even the subtle differences between the machines.
Despite all the hard work and best efforts of the surgeons, they hadn't anticipated an "un-benign" tumor, let alone something this rare. So, they cleaned it out as best as they could, but not in an "oncological way" (where you're supposed to remove everything with a margin and definitely not cut inside the body for fear of spreading cells). The result? Not only were there remnants in the surgical area, but a few new "friends" had joined the party, likely spread during the procedure.
So, despite winning a new doctor—who handled my suppressed cynicism quite well (giving him a passing grade in my book, and spoiler alert: he even survived the later severe deterioration of my cynicism)—he realized we had done our homework and started throwing data at us. Every now and then, one of us had to stop him—either with a question (Sharon’s way) or with a weird smile and a half-cough (my way)—to remind him that just because we know what Chordoma is, it doesn't mean we understand everything else.
Just like I didn't know the difference between a 1.5 Tesla and a 3 Tesla MRI machine until my second time inside one, I had no clue there were different types of radiation. I was perfectly happy in my "happy place," thinking that if you need radiation, you go to the machine, someone hits "Start," and after a few sessions, you're good as new.
Well, it turns out there are plenty of types, and "simple and easy" wasn't on the menu. None of the radiation types available in Israel would even make my tumor flinch.
Chordoma isn't exactly "cancerous," but it’s definitely not benign; it’s a tumor made of embryonic cells. And those cells are incredibly—and I mean incredibly—hard to destroy with almost any standard radiation. If you leave even a micron of the stuff behind, it’s guaranteed to grow back.
Proton Therapy—yet another new term to become a pro in (because I didn't have enough hobbies). By now, every time I show up for tests, the technicians talk to me like I’m one of their own.
If things are going to be crooked, let’s go all the way. Due to bureaucracy and "who has the bigger ego" contests, Israel—over 15 years late—hasn't built the facility for this type of radiation. It’s basically a small atomic reactor that requires a massive building. So, in recent years, they usually fly people to Switzerland or Vienna, since it’s closer and more convenient than the US.
True to my motto of "Why simplify when you can complicate!", we sent all the materials via my radio-oncologist to a world-renowned Austrian expert who had built these institutes in the US.
Besides the "European-Friendly Plus-Plus" attitude and a nice smile, he said I needed radiation and a very massive plan, but only in the US. Because my case is rare and complex, and they have 18 years of experience there, whereas the Austrian center is young and doesn't have the specific knowledge yet (even though they are excellent at things like brain radiation).
A family trip to the US sounded tempting, but Europe appealed to me much more—the proximity to Israel, the convenience, plus friends living in the area. But then he mentioned one more thing: in the first surgery, they had stabilized my vertebrae with a titanium screw.
And we’re back to physics class: metals (turns out titanium is a metal) absorb radiation and significantly reduce the treatment's effectiveness. So, what do we need? Another surgery! Or as my radio-oncologist called it, a "mini-surgery" (I actually believed him back then) to replace the screw with one made of carbon fiber.
Just as I was starting to truly recover from the first surgery, my face was already turned toward a brand new one.
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