The Race to Release

Everything in life is relative, but being in a room with one or two other patients feels like pure luxury after the ward’s ICU. In the ICU, three patients are considered an "empty room," yet the level of noise and visitors is insane. Even though I wasn't fully conscious for those three days—navigating the pain, the adjustment, the shift from anesthesia to sedation, the "pain twilight," and the transition from lying down after complex surgery to sitting and then walking (how much I cursed Sharon)—I was still very happy to move to a regular room where I could actually recognize and remember everyone who came to visit.

Sharon’s master management skills were in full effect here. She managed who came, when, and for how long, which took the hassle off me. Honestly, it made the visits look like a well-coordinated schedule. I tried not to listen when she laid out the daily plan, so that way, it was still a surprise. Family, friends, coworkers—sometimes there were interesting and usually successful mashups between my different social circles.

Remember how we always say, "Don’t bring anything"? I really meant it, but it was still cool getting surprises. Over time, I developed superpowers: identifying exactly what each person would bring. Chocolates picked up on the way from work, sweets from the Roladin at the hospital entrance, over-the-top fruit baskets, even stuffed animals because I have a thing for them. For those who really had no idea what to bring, a floating helium balloon with cartoon characters totally did the trick. And "the trick" is simply heart-expanding—just showing up and surprising me (though just showing up works too).

It’s hard for people to grasp that after surgery, you don’t actually have much free time. Between various "colors" and types of physical therapy, blood tests, X-rays, MRI, CT, PET CT—and the fact that none of these tests are in the same building. Depending on the situation, if the patient isn't literally bolted to the bed, they have to move to a wheelchair just to get to the test. Every tiny movement is a major ordeal followed by a long recovery—don’t even get me started on sneezing; it takes 40 minutes for the color to return to your cheeks.

I know visitors are important, but in the right dosage. It's crucial not to be shy when it feels like too much and you need to rest. If you somehow feel awkward in front of someone who traveled from far away, "spontaneous falling asleep" usually works. I say "usually" because, while I never actually had to fake it, I discovered it always does the job. Several times I woke up to find that, by some miracle, my work friend had vanished and my sister was sitting there waiting for me to wake up.

Regarding the staff—in 99% of my many hospitalizations, they were magnificent. Truly. At first, we were surprised by it, but over time, our high appreciation for the healthcare system only grew and became filled with different nuances. I learned not to argue with the ward's support staff and to do (as much as I could) whatever they said. No matter how painful or exhausting it was, there was always positive progress after the difficult recovery.

Even though the staff went above and beyond and were very positive, I still had one small fear. I learned to measure the level of threat by the speed of movement and the size of the smile on my wonderful physical therapist's face. The happier she looked walking into the room, the more I knew I was about to suffer. If she walked in with strange accessories, my fear only grew—no matter how innocent the devices looked. For example, a plastic box with colored balls that looked like it was taken from a baby store is actually a Chinese torture device for someone who had surgery involving the lungs. All you have to do is breathe in or out (depending on the exercise) and hope to make all three balls float.

I have an advantage: despite loving good food, I manage just fine and—quietly, so no one hears—I actually like hospital food. This goes against the popular opinion that hospital food is a horror show and that to get stronger, you must bring food from outside. But that has risks a patient in my condition doesn't always want to face. My trick was to eat outside food only when I could get out of bed; then I was on high alert for a quick move to the ward’s "amazing" bathroom/shower. I learned that after the third hospitalization.

After nearly 10 days and at least a million tests, the "clearance form" finally arrived so I could be discharged. This is exactly when all the necessary professionals disappear, and my patience is tested as I wait for two things: the discharge letter and for someone to unhook me from the machines. The nurse always—but always—arrives with a ear-to-ear smile and within twenty seconds, I'm disconnected. She stands there smiling with all my gear folded, wishing me health and hoping we don't see each other again. I hoped so too, but it doesn't really work out for me.

On the way out of the ward, Sharon places enough chocolate on the desk to feed two departments, and I receive a sheet of questions and explanations that sounded pretty idiotic at the time. "How are you getting back? Is someone picking you up? Is there an elevator in your building?" and so on.

I answered "Yes" and "Of course" to almost everything, not really understanding why these questions were so important. But very quickly on the ride back, every pothole—even a turn Sharon took with the utmost gentleness—I felt right in my tailbone. When we got home, a message arrived that the elevator had just been fixed. Only then did I understand the nurse’s discharge questions, as I counted every single step to my bed at home. It took another hour for the color to return to my cheeks and for me to start breathing again.

So, what are my conclusions?

1. Let someone who cares about you manage the schedule. You won't be able to anyway, and it just creates unnecessary stress of "when to come?" and "what to bring?"

2. Accept the staff in advance. Don't skip asking questions, and make sure someone is with you—at least during doctor rounds and important times of the day.

3. Patience and more patience. We aren't the only ones in the ward.

4. If we can't calm ourselves down—from the physical therapy, the tests, or otherwise—appoint one "merciless" person to help us get through it.

And that’s it. I left and was sure that the Chordoma and I had parted ways. But the journey had only just begun—which is why this blog exists. I’d love to hear what you 

Match expectations

Since my personal superpower is avoidance and repression, I wasn't even willing to entertain the possibility that this might be a malignant tumor. Essentially sticking my fingers in my ears and shouting "la-la-la" like a child, I did almost everything to avoid thinking about it.

A few days earlier, a colleague from work arrived devastated after a small growth was discovered. They removed it quickly and sent it for a biopsy. I reassured him, relieved they'd acted fast and hoping for a benign result. With great innocence—and likely a very strong inner will—I explained with total confidence that because of the speed and size of my tumor, mine would definitely be benign. This thought was anchored in the absolute certainty of my doctors, who believed that given the location and size, no other option seemed plausible.

Thanks to Sharon, we managed to find an incredibly early surgery date at Tel HaShomer—just a matter of days. It was clear it wouldn't be simple, but just before I was hospitalized, I got the good news from my friend: his results were clear. I felt relieved for him, and I was certain that soon, this would be my reality too (imagination creates reality, right?).

The pre-op preparations went relatively smoothly. Well, except for the fact that transferring blood test results into the hospital system took hours; a small tip: printing them out saves a lot of time (Sharon only told me about fifty times, yet for some reason, I still didn't listen). Then came the anesthesiologist, the surgeons, and arranging childcare shifts for the kids. As for me—no fear. I was completely unbothered, innocently thinking that after surgery, they'd bring me my laptop and I'd be working from my bed that same day, or the next.

I was hospitalized in Neurosurgery due to a shortage of beds, with plans to move to Thoracic Surgery after the operation. I didn't really sleep that night. My biggest fear? The shower at 5:30 AM. I hate water. I mean, I really hate it.

Over time, I learned an important lesson about the so-called "design genius" of hospitals: a shower that is also a toilet, fully adapted for accessibility, which adds all sorts of strange poles and a wheelchair you can shower on. It's as if there's a lot of wasted space in that tiny square, with a setup for a curtain that never exists—replaced by the ingenious substitute of a squeegee. There is zero room for error and a 100% chance things will get wet.

Experienced patients check for the squeegee before entering because it's essential if you want to leave the room dry. I suspect that to encourage patient interaction, there is always one less squeegee than needed in the ward. Don't even get me started on the number of chairs—a very rare commodity in certain departments.

Before surgery, you have to shower with a special red soap. The color is the least of its problems; it feels remarkably like sand. To top it off, you have to put on that backwards gown by yourself. I always stare at it for a few minutes trying to figure out what goes where and how to tie all the strings so it at least resembles a minimal piece of clothing. Once I succeeded, my only goal was to get back to bed as fast as possible because every passing second was turning my backside into a popsicle (remember my hatred of water? Water and hospital AC is a combination designed for suffering).

This is also the moment when you must absolutely never give up on having two blankets. I clung to them for dear life. This becomes even more critical in the pre-op waiting room, where the temperature is perfectly comfortable—for penguins. The staff members are all in short sleeves, constantly moving just to keep from freezing.

As it turns out, imagination (or the lack thereof) doesn't actually create reality. And these doctors had plenty of time to do their cutting and carving.

It's common knowledge that during surgery, they take a small piece of the tumor, freeze it, and stain it right there on the lab table. The tissue's reaction can indicate the type of tumor—just like a high school science lab with a frog. As had been the case so far, luck wasn't on my side. Life clearly had its own plans; the color that turned up was exactly the one neither the doctors nor I wanted to see.

Except, I wasn't aware of that yet.

Coming out of recovery—which I don't remember—I entered the department's Intensive Care Unit for three days. I didn't even know this existed: an ICU inside the ward. I admit those three days were a blur of fragments; parts I remember followed by black holes.

Because my surgery was on the spinal cord, many pain relief options were off the table, and an epidural was forbidden. I was far from comfortable. To this day, I haven't decided if the excruciating pain was the worst part, or the compression stockings. Apparently, those are a real thing, and they are incredibly itchy. They're designed to keep the blood flowing and avoid complications from lack of movement.

I looked as white as the pillow I was lying on. Still, the management of expectations is an interesting thing. The amazing nurses didn't ignore my condition, but without missing a beat—even though the pillow was looking more colorful than I was—they got me up to start walking very quickly. I was so high and in so much pain that I'm not sure I wasn't actually floating, but at the end of those three days, I was so happy to move to a regular hospital bed with only two other patients and say goodbye to the machines that never stop beeping 24/7.

That was also the moment I realized three days had passed.

Bureaucracy for Beginners Special Puzzle

This was the first time I started to realize that even though I’m an expert in the laws of logic-and there isn't a puzzle I can't solve-this specific puzzle has its own twisted set of rules.

Logically speaking, if a dozen doctors are panicking about the size and location of your tumor and tell you to act fast, everything should move at a lighting speed. Right?
Well... wrong. Instead, you suddenly find yourself suspended in mid-air, hovering over the abyss, because apparently, there's plenty of time to realize that my health insurance doesn't work with this hospital, and that I might get an MRI faster if I'm not hospitalized... unless I'm hospitalized in a different ward. Welcome to Bureaucracy 101.

All of this happened after my family doctor, with relative calm, sent me to the ER on a Friday night because "it’s the fastest way to get an MRI." But since my tumor wasn't in my head, we had to find a thoracic surgeon on call on a Friday night. Let’s just say winning the lottery would’ve been easier.

After several long hours in the (wonderful) Tel HaShomer ER, someone vaguely connected to thoracic surgery appeared. I started explaining the situation, and he just stared at me. Sharon took over and explained it again-shorter, punchier. Within five sentences, he confirmed that yes, this was his department, but since the MRI unit was closed for the night, we should come back Sunday morning. He promised that a world-renowned expert would know how to handle it. Reassuring, right? As it turned out, that expert was his boss (who doesn't believe in the Goddess of Luck/God/the waving lucky cat at this point?).

So, we met the doctor and realized the most important thing was the MRI. Only problem? No available appointments.

Somehow, in the middle of this tornado, it felt easier to deal with bureaucracy and technicalities. Everyone around us started pulling strings—friends, colleagues, random people on the street—trying to figure out who could help.

Suddenly, everyone has a "friend who’s a neurosurgery resident" who can "fix you an appointment for the day after tomorrow" at a hospital near your house (in his dreams). But then, a real appointment was made: a mere one-hour drive away, at 01:00 AM.

To add an apocalyptic vibe to the whole thing, we found ourselves just after midnight on the winding roads up to Jerusalem, heading toward Ein Kerem. While I was mentally preparing to sleep in a machine that sounds like heavy artillery, Sharon was convinced she was in a European Rally, competing for first place.

She took every curve at 100 km/h, flashed her high beams at oncoming cars to make them dim theirs, and found overtaking spots with the calm of a Zen racing pro.

Regardless of my grim situation, I highly recommend touring hospitals at night. The atmosphere is perfect for a horror movie. Unlike the daytime, there’s no one to guide you through the long, dark corridors. Naturally, there's always that one flickering halogen bulb in the middle of the hallway to amplify the doomsday feel. To this day, I have no idea why half a hospital is dark after midnight, but hey—that’s Jerusalem for you.

And don’t worry, the bureaucracy never disappoints. After a few wrong turns, we found ourselves in front of a receptionist at midnight. Contrary to the abandoned hospital, the MRI waiting room was buzzing with life.

We weren't exactly thrilled to discover that the code on my referral didn't match the test code. It’s always fun to have one more "little thing" to fix later, except no one at my insurance company works at 2:00 AM. We signed a guarantee, and I went in for over an hour of staring at a smudge on the machine's inner wall, trying to doze off despite the deafening noise and the freezing cold. That’s my version of meditation.

Two days later, with the results in hand, we stood at a crossroads with the doctors who had wanted to operate on me "yesterday." Now, with the MRI results, they wanted to operate even faster. Meanwhile, the "friend of a friend" who helped get the MRI claimed, after a consultation, that a biopsy was a must.

We had to decide. We didn't exactly flip a coin, but we weren't far from it. Between two veteran, well-known surgeons, I just wanted to move forward. I wanted to end my questionable relationship with this tumor—I’d already started giving it nicknames, which is always a clear sign that the relationship needs to end.

Toward the surgery... why we skipped the biopsy, and what happened next—in the next post.