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.