First week

Armed with an access card bearing my photo, a bag of long-sleeve clothes because it's freezing in there in the middle of summer, and the excitement of a first day at a new job.

Standing in front of the camera, holding my new card at every possible angle at the entrance to the radiation center itself — and the number of negative beeps screaming at me just wouldn't stop.

From the front desk, a polite young man emerged at a pace that can only be described as aggressively slow — very on-brand for Americans — and with ice-cold composure re-entered my details into the computer. At that same speed he took my card, swiped it once, got a positive beep and a green light. He opened the door for me, handed the card back, and returned to his seat.

It took us a few moments to realize we were already inside the patient area. Sharon was beside me, and of course within less than a second a nurse had pounced on me with a stack of papers and launched into the "morning interrogation" — with her favorite questions: age, weight, blood tests, X-ray, this test and that test. Fun stuff for a Monday morning.

After about an hour, the long-awaited moment finally arrived: the changing rooms, the special gown, and — most importantly — the hook on the wall specifically for my walking stick. From there I moved to a small waiting room that usually holds at most two patients waiting for their turn. Sharon waited with the kids in the main waiting room — first time, after all.

The nurse called my name and I shuffled over at a pace befitting a tortoise, stopping at the entrance while three diligent staff members dismantled the entire setup from the previous patient, brought in the cast made specifically for me, connected it, loaded my treatment plan into the system, asked me twice for my full name including ID number, and then of course also scanned the tag.

Not forgetting to hang my walking stick on the hook designated specifically for that purpose.

Even though I'm perfectly capable of climbing onto the table myself, they set up stairs and had someone standing by to support me, making sure I was as comfortable as possible.

I've been through plenty of procedures in my life, surgeries too — and yet, for some reason, staring up at the enormous wheel surrounding me as it calibrated itself several times before it was ready to start, watching the entire staff flee the room when the bell rang, and finding myself alone — gave me a strange feeling. For the first time since the whole process began, I felt a combination of tension and calm at once. A quiet laced with anxiety about what the rest of the treatment would bring.

The whole time on the table went somewhere between five minutes and a quarter of an hour at most, and still felt like half a day. Between beeps: "now take a deep breath, hold, don't move, breathe out" — a range of commands that reminded me of training our dogs. Done. The stairs returned on the way off, along with the person making sure I didn't go flying.

Leaving the room, while they dismantled the table and prepared it for the next patient, they went through the questions again, scanned the card, made sure I wouldn't forget my stick, and told me what time to come tomorrow.

I walked past the waiting room with a slight sense of superiority, on my way back to the changing room — stopped for a moment by a girl who I couldn't help but feel a chill for, knowing she too had to go through the same process.

From there I headed to the outer waiting room — the one with the Coke fridge and the crackers, which I surprisingly needed. Rested a bit, and we went grocery shopping for the first time. My very first time in a Walmart — love at first sight. A supermarket and everything else all in one. I only stood at attention in front of the wall of jerky and cured meats. Alongside sorting out things we were missing, we also tried to figure out something for the kids. It was July-August after all, and we had two and a half months of full treatment ahead — assuming no complications.

Aside from discovering a group of incredible Israelis who just wanted to help, we were pointed toward the Jewish Community Center to ask about a day camp. But like in Israel, only until 4pm. The concept of a sleepaway camp — sending your child away for a month without seeing them — is still beyond me.

Every morning, usually by 10am, I'd show up at the institute, and most days I was done within an hour. Every so often I'd walk out to find Sharon and the kids sprawled on the couches waiting to go carry on with the day, or they'd be returning from a short walk nearby to pick me up.

By the end of the first week, the kids had a camp sorted too, with enormous help from the JCC.

As the days went on, I occasionally managed to walk to the treatment center — while Sharon dropped the kids at summer camp — surrounded by flocks of ducks and not nearly enough sidewalks beside me...  (everyone drives everywhere there). Though let's say those walks accounted for no more than 10% of treatment days, for many reasons, the main one being: the fatigue and weakness that set in about two weeks after radiation began

A coca-cola fridge!

"The Jewish community there is amazing!"

That's a sentence I heard countless times from people who'd gone through treatment there. The thing is, Sharon and I try — as much as possible — not to lean on other people, based on the belief that whoever truly needs help should be the one receiving it.

We started to understand what everyone meant when Sharon asked on Facebook for the best way to get from the airport to our first place. A connection through a friend led to a conversation with a remarkable woman, and the answer came back: "Boris will be waiting outside for you." And he was. Boris waited outside the terminal in New York, loaded everything into the car without many words, and off we went.

We arrived too early to a very strange long-term residence — a cross between a movie hotel and a kibbutz room — and of course there was no one to check us in. Before we could even ask, an Israeli woman who lived there materialized out of nowhere and swept us all straight to her apartment. She came armed with a bag containing everything a new arrival in America needs: odd adapters, games for the kids, and more — all to soften the landing. She stayed with us for an entire day and helped with all the administrative chaos of getting started.

She helped us settle into the interesting room we'd been given, which was right next to a basketball court buzzing with players of all ages.

The next day she drove me to a series of tests, and took Sharon and the kids to rent a car. While I was busy with examinations and questionnaires — where every twenty seconds someone asks me on a scale of 1–10 how much… — and every few minutes another specialist reviews my medical file and gives me the exact same look as the one before: a look of deep empathy and endless astonishment. Then they get to the medications and recoil at the dosage, and at my ability to still walk in a straight line. Relatively speaking.

Eventually Sharon returned, armed with a new car. The kids had been connected to the waiting room Wi-Fi, and Sharon joined me for the meeting with the doctors. Toward the end, the doctor walking us through the process explained all the risks of this type of radiation — and paused at their concern about weight loss. The worry is that too little body fat causes the beam to do more damage (and any change in weight at all can reduce the precision of the treatment).

So: not the time for healthy eating. I was advised to go back to burgers, Coke, ice cream, and so on. We smiled and said that's my usual anyway, so we'll happily oblige.

The kids waited in the institute's enormous and genuinely beautiful lobby, which included a coffee and tea corner, a drawer of cookies and pretzels, a Coke fridge (very important) — basically everything a human needs to survive. And a stunning fireplace that runs even in summer.

I was given tests to do at a different hospital and told to come back in five days for the start of treatment. Light free time ahead.

After a day that was mildly exhausting for me, and apparently quite enjoyable for Sharon and the kids, we returned to our small, strange, but soon-to-be-beloved room at the extended-stay roadside motel.

We'd be moving to a different apartment later — but that comes later.

Out of necessity, as part of acclimatization — and when there's no choice, there's no choice — we spent two days at the largest indoor water park in the area. Water at a reasonable temperature (who said he hates cold water?). We walked around a bit in New Jersey, took the train for a day in New York, and then — off to treatment.

Up to that point, our idea seemed to be working. Looks like we were actually going to make some tasty lemonade, and almost effortlessly. (Reminder: this is the part before the radiation started.)

Day one —

I spent another full day answering questions, watching faces go from blank to stunned, and then came the interesting part: inside a CT machine, lying still while a bag of plaster and clay mixture was molded to create a custom cast of my upper body — so that I'd be positioned on the machine to the exact millimeter in front of the beam. And as a parting souvenir, they marked the spot with three dots using a tattoo needle. The most painful part of the entire process. I finally emerged with my own photo on a name tag, a schedule for the coming week, and a can of Coke.

Wish us luck — and we're off!

 

The race for flight

At this point we should have already figured out that logic and pretty much anything that happens — or is supposed to happen — in the oncology system don't really have much to do with reality.

Lying on the table at home were 4 passports. Three with visas, and one belonging to our youngest — without a US visa. Eight days to the flight, and out of everything on the to-do list, this was the top priority: making sure we don't arrive at the departure date with a 5-year-old who has to stay behind. A scenario so absurd and surreal it felt made up. Turns out it's very much real.

My health fund, it turns out, has a department that handles procedures unavailable in Israel. In general, the Israeli government funds treatments for anyone who has no domestic option (logical, and also heartwarming — yes, there are things like this in our tiny country. And important to note: as far as Sharon and I know, these are not experimental treatments).

So after a fairly short call and filling out some technical details with the person in charge at my health fund, I explained that we were planning to make lemonade out of lemons and fly the whole family to the US for two and a half months as a summer vacation. To my surprise, she wasn't surprised at all. She was already prepared for it, and even tried to help with the adjacent stuff that wasn't technically her responsibility (our children, bless them).

Travel agents are something we'd long forgotten existed in regular life — but in this world, not only do they exist, they're genuinely necessary and remarkably efficient.

Meanwhile, in the chordoma patients group — which barely has a double-digit headcount — I consulted about the flight, the treatment, where to stay and what to do. Everyone reassured us that there's a caring and active Jewish community there, plus an Israeli community that's also very invested in helping. More on that later.

Back to the US visa situation and the embassy rules nobody told us about. The pressure was on, so we tried everything: friends, family, companies claiming they can get a visa in 72 hours. Everyone gave me the same answer — it's medical, it's an emergency, the embassy must respond within 48 hours, which is exactly why they can't help.

Between what's supposed to happen and what actually happens, there's a small gap. No matter how many emails I sent, how many people tried to reach someone they knew at the embassy — silence. Four days of it. Meanwhile, simple math: four days left. It turned out later they'd had a holiday, and despite their own rule about 48-hour emergency responses, it took them four days just to open the inbox.

In the middle of the day, someone called me — very calmly, in a way that somehow still felt stressful — asked a lot of questions and basically read back all the documents we'd already sent. After a very long call, they scheduled an appointment for the following day. Three days to the flight, the clock is not stopping, and the woman on the phone was not particularly bothered. She too repeated the mantra: everything will be fine, these are just the procedures.

Meanwhile, Sharon is wrapping up her school year, packing up her entire office, making lists of everything we'll need, and — as always — calculating every expense: the apartment, the car, camps, food, and more. She's also reaching out through people to understand how the community there can help — even just with familiar faces.

Mid-packing-up-the-house-and-making-sure-the-plants-get-watered, I drove with the kids to drop the dogs off at the kennel. Not an easy goodbye.

Alongside all the chaos, and over two months late, I received the conclusions from the National Insurance committee — who not only violated their own rules, but also refused to give me documents I still don't understand why they withheld.

In short: many pages explaining just how active, healthy, and frankly ready for the upcoming Olympics I am — but I do have this "little quirky thing called chordoma," and since it's my first year since diagnosis, I'm at 100% disability.

Which also means I'm entitled to a disability parking permit that I very much need in the US. So, magically, yet another bureaucratic item was added to my personal fun list.

Three days to the flight, and I find myself back at the American Embassy — except this time with an appointment. The wonderful security guard who had genuinely tried to help me last time opened the door cheerfully, and I waddled in like a duck as people overtook me, going from door to door until I reached the large hall and a snake-shaped queue straight out of a theme park.

Within less than 30 seconds, a doorman approximately two meters tall walked straight toward me. His eyes locked onto mine and I felt like the Mona Lisa — wherever I moved, he followed. He pointed at me, said "after you," and I, with my cane, hobbled behind him, past quite a few people, until he positioned me first in line. No one dared breathe next to him.

Straight to a pleasant clerk who clearly knew the whole story and just wanted to help. Which meant that within ten minutes I was outside with a visa for the kid. I stood there mildly dazed outside the embassy, a little stunned by the speed and efficiency after the initial chaos. Another thing that needed to happened...
successfully, and grandma and grandpa could finally breathe a sigh of relief.

At work, they somehow managed to contain my nonsense. An interesting conversation with my boss and my boss's boss ended with good luck wishes, hugs, and gifts from both sides (a bigger gift from their side). What mattered to me was emphasizing that I plan to keep working from the US between radiation sessions — and I caught my boss's very diplomatic "sure, sure" look, which clearly meant "give me a break."

Which freed me up to go back to hassling the Ministry of Transport about the parking permit they still hadn't sent, with excuses that were not particularly helpful. After dozens of calls over three consecutive days, two days before the flight, the permit also decided to show up. Another green checkmark off the list.

Everything was packed and ready, including all the flight bureaucracy. The agent got me a seat where I could lie flat — which meant we were separated for a very long flight. Sharon somehow survived it fine.

At the airport, still in Israel, I won't forget the expression on the check-in agent's face after she explained there was overbooking in business class (still not entirely sure how that's possible), and maybe I'd want to move to a different seat in exchange for compensation. Midway through her explanation, she received my oncologist's medical summary. Her eyes went wide. She went pale. She stared at me in shock. Then, without a word, typed furiously, announced on the phone that I need business class, and within a minute we weren't there anymore — we were in duty-free.

Guilt is a very powerful thing, especially when I'm sitting in business class with a reclining seat, excellent service, while Sharon is crammed in economy with the kids. I still landed exhausted, while Sharon and the kids looked very pleased with themselves. The worst part was that I wasn't allowed to complain — and rightfully so. Cruel world.

From Snail’s Pace to Absolute Panic.

I’m already moving at a snail's pace as it is. So, when things start moving in parallel and at high speed, I find it impossible to stay focused or even keep up.

Every professional around me agreed that I need radiation. But, just to keep things complicated, it had to be the kind you can't get in Israel. Nuclear radiation. And much to my disappointment, it has absolutely nothing to do with Spider-Man or any other superhero origin story.

My radio-oncologist and a certain Austrian doctor—a world-renowned radiation expert based in the US—built a plan for me. And no, this isn't the start of a joke.

Being the organized physician that he is, the Austrian doctor CC’ed me on every single email. Polite? Very. Efficient? Not so much—especially since I found myself needing a medical dictionary for every second word.

On a different front, we found ourselves racing from meeting to meeting with a neurosurgeon who was new to us but very seasoned. He was there for a "light" surgery (his words, not mine) to replace my titanium fixation with carbon.

Since I have a bit of a background in materials, I was actually quite hyped about this new direction. I figured it’s my first step toward becoming a high-end bicycle—slowly but surely. The doctors were less amused by the joke.

Throughout the preparations, they kept emphasizing that this surgery was relatively minor and nowhere near the scale of the major one I’d already been through. In my head, that translated to "recovery will be a piece of cake." Or maybe that was just wishful thinking.

Every hospital has its own protocols, philosophies, and work practices. The moment I got used to one, everything flipped at the next place.

For example, at Sheba, all pre-op preparations happen within the department itself, pretty much in one spot. At Ichilov, however, things are a bit different. I suddenly discovered the place is much larger than I thought—apparently, you can easily walk for over ten minutes in one direction and still be on the same floor.

I reached areas that felt way beyond the hospital's borders—it felt like a parallel universe. Shacks that remind old-timers like me of a military induction center, packed with a disproportionate number of people and yet another diverse "queue management system" whose logic I stopped trying to decipher a long time ago.

Just entering one of these shacks requires a bachelor’s degree just to figure out which option to pick on the sophisticated LED screens. Every click feels like the end of the world—like maybe the surgery won’t happen—if I press the wrong button.

Even during the examination, which was nothing more than a formality, the doctors looked a bit confused. They checked everything multiple times to make sure they hadn't missed a thing, because every mistake would require quite a few physical steps on my part to fix.

After half a day and a significant amount of waiting, I got the official stamp of approval confirming I was ready for surgery. I was able to return home before the procedure with a "good heart" and a backpack full of anxiety.

While the pre-op waiting room at Ichilov is much larger and noisier than at Sheba, there was still something very pleasant about it. It was likely the fact that Sharon stayed with me until I was literally taken down that final hallway that made the difference.

The operating room, however, was still frozen way beyond the comfort zone of a penguin colony!

Luckily, there was an unlimited supply of heated blankets right there on the operating table. They gave me something warm to hold onto at the last second and sharpened my cosmic ability to focus on completely unimportant details.

So much for the perks. When I woke up, I finally understood the difference in philosophy between hospitals—or surgeons. The surgery was a success, but the recovery was a totally different beast. It hurt. A lot.

On one hand, I felt like they only "opened" my back, so my mobility was much better. On the other hand, the amount and types of painkillers were different and much lower. I discovered new, creative types of pain, and nothing really helped.

I was only hospitalized for three days in the ward with quite a few visitors, but my "attentiveness" toward them was, to put it mildly, lacking. I was in so much pain that I frequently fell asleep in the middle of a visit—and no, it wasn't a tactic to avoid the guest.

Those were 10 complex days, no less intense than the three months it took me to recover from the first surgery. Even here, I tried to get back to work as quickly as possible.

Driving after back surgery isn't easy, but being a passenger in a taxi isn't much better. I watched taxi drivers change their entire driving style just by witnessing my breathing—or lack thereof—and my "stunning" facial expressions.

While I was busy with my nonsense of trying to become functional again, the "Three Wise Men" (the oncologist, the radio-oncologist, and the Austrian doctor) continued making plans and closing deals.

For instance, we were positive we were flying to Austria. We already imagined moving into a friend's house. It would be a short 4-hour flight for family to hop over and help. Besides, Austria is supposed to be beautiful for trips.

Then came an email—and a surprise!!! The Austrian doctor informed us that while the facility in Austria is new, they don't have enough experience with "trouble" like mine. As far as he was concerned, only the center in New Jersey is seasoned enough to handle a complex case like mine. And surprise number two!!! My radio-oncologist agreed with him.

For the first time ever, I wasn't happy about being "special."

This is where my wife and I began hatching a diabolical and genius plan: turning lemons into lemonade. We sold the kids on a "trip to the USA," except we didn't actually know the dates yet.

We assumed it would be around August, give or take a month. Since we were less than two weeks away from the start of July, there was no way it would happen before then.

Or so we thought!!!

With peak American calmness and nonchalance, we received a letter from the US facility: "Your plan has been approved. You are invited to start in 12 days."

It definitely wasn't going to be a month. It wasn't even ten days. This was real-deal panic time.

Just the technical stuff: health insurance bureaucracy, finding a place to live there, checking everyone's visas (and getting one for one of the kids), booking flights, and updating my workplace. Oh, and I’m sure there's something small I’m forgetting... like packing the entire apartment and finding a dogsitter.

Logically? It would take at least 10 days.

Or as I said to Sharon: "It’s a small thing."

More on that "small thing" later...

Even in illnesses, luck is needed.

 It’s not a competition, and nobody really gets to choose their hand. But even I know when I’ve been dealt a truly, truly garbage hand—not a single card connects to anything.

If you haven’t figured it out by now, my specialty is getting into situations or doing the exact opposite of what’s expected or desired—in almost every scenario. For instance, since we’re already talking about cancer (not that I had a choice), it’s better to have a "user-friendly" one. The kind that thousands, if not hundreds of thousands, of patients have had, and maybe even recovered from. And if you ask me—the kind where the radio-oncologist is a supporting doctor, not the lead guitarist.

All these complaints are because after almost a year in this mess, there was a brief moment of silence where we realized we actually knew nothing about my rights. It’s not just that there’s a lack of concrete information on Chordoma; everything with me is upside down—it’s "unmanaged bureaucracy."

We also realized that my family doctor was a pro as usual. From the moment they discovered what I had, he did two things.

The first and most important (which, turns out, isn't automatic)—he entered me into the oncological patient database. It’s a pretty large club, and definitely not one you want to be a member of. But that simple action made dealing with my health fund and National Insurance (Bituach Leumi) a bit easier. Don’t worry—the Tax Authority remains its usual self.

The second thing—from that moment on, for anything that didn't involve an Acamol or a band-aid, he sent me straight to the oncologist...

But wait, I don't have an oncologist!

I had quite a bit of bureaucracy to handle. The kind that takes at least two hours just to fill out the forms on the National Insurance website. Because I couldn't find an option for "Chordoma," I kept ending up back on the same page, greeted by that warning in bold red letters stating I hadn't filled everything out. After more than ten attempts and zero help from Google or tech support, I gave up. I decided to click on the cancer closest to my disease—"Sarcoma"—and hoped for the best (Quick spoiler: at the board meeting, the doctor laughed and said I should have just ignored it).

I don’t really know where I, and of course my amazing wife, found the strength to start digging through the National Insurance website and Google to discover some real bureaucratic gems. For example: anyone diagnosed with cancer is automatically recognized with 100% disability for the first year. In my head, at least, that meant no board meeting was necessary since all the documents were there—it should be a rubber stamp from here on out.

Or so I thought. Don’t worry—two days after submitting the form, a clerk from National Insurance called me (the fastest efficiency I’ve ever encountered in my life) to summon me to a board meeting. During the call, I’m naively trying to understand why. They have all the forms; everything is clear in advance. There’s no reason to bother me, a consulting doctor, and a clerk for a redundant meeting with a predetermined outcome.

After 10 minutes of "So you refuse to come?" from her and "No, I just don't understand why" from me, she stuck to her script: "So you refuse to come." I decided to end both our miseries, agreed to show up, and finally hung up.

At 3:00 PM, while still recovering from my second surgery, I found myself hobbling to the nearest National Insurance branch. At the security check, they were more interested in knowing if I had a lawyer with me than what was in my bag or why I could barely breathe.

Since it was late, the branch was deserted, looking like a desert from a Hollywood Western. The only thing breaking the silence was the grating loudspeaker reading out numbers in no clear order to rooms hidden from view. There's always that dilemma—to go to the bathroom and risk them calling your number. Pro tip: always go!

Here, I’d like to point out that not only is there no reason to get stressed about these boards (and later I’d discover some positive changes), but you also don't have to surrender to all their whims, like I did in the room.

There wasn't an extra chair for me. Both of them sat comfortably, while I (it was my first time) was stressed and stood there with my walker like a good soldier. I answered all their questions. Halfway through, my strength failed me, and I asked about a chair. The answer still amazes me: "You can go look for one, but it’ll be on your meeting's time."

I’ll cut it short and surprise you: in the end, there was indeed no need for the board at all. When I dared to ask why they brought me there when I could barely stand, they didn't even answer. They just smiled and waited for me to leave the room for the next patient. The doctor even felt a bit peckish and pulled out a sandwich so he wouldn't starve to death.

So, as I said, that was the stage where we realized we needed to start getting organized. we went to the "market" to find an oncologist.

We needed an oncologist who wouldn’t just agree to take me, but who knew what I had, understood the disease deeply, and maybe even had experience with at least one other patient.

"Don't swap a winning horse"—Tel Hashomer came to my rescue again. We found an oncologist who, in hindsight, turned out to be a good friend of my radio-oncologist from Ichilov. He also managed to handle my incredible sense of humor and my cynicism, which never stopped reaching new heights.

The oncologist also had a punchline (just like the radio-oncologist): that he would do everything to help, to navigate the complexities of the disease, and sometimes act as a rubber stamp for bureaucracy—but having him was good, if not critical.

What many don’t know is that with great power comes great responsibility... wait, wrong story. With an oncologist comes an oncology nurse, a social worker, and quite a few other professional services—exactly, or almost exactly, for the problem I have.

The volunteers who were really trying to help me with National Insurance quickly summoned the social worker. She couldn’t help me with that, but suddenly, other services were resolved the moment I registered for the department. The question of "Are you oncological or not?" finally ended. I didn't get a badge, but every form was officially signed off that I belonged. It’s strange, but even a disease needs a home, and so do people.

Everyone knows best.

 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.

Radio… Oncologist

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.