Writing about my surgery is hard (pt. 1)

So instead I'll focus on the glimmers of grace and gratitude on this otherwise gruelling journey that I find myself on

Warning: The writing below contains parts of a medical journey that can be distressing to read. Reader discretion is advised.

Also, for all the new subscribers who have come on board in 2023 - Welcome 💐!
I usually write about things I find cool like knowledge management, note-taking, culture, cities, design, history and the like but my life has been completely taken over by a recent health issue, which is the topic of this email. I promise I’ll be back to writing about those things as soon as I feel better!

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prompt: an anatomy doll with its hands resting on its stomach, cropped around the torso, in neon

Brief summary of the last 5 months of my life:

1. Discovering that a grapefruit-sized “mass” growing from your liver is the potential cause of your abdominal pain.

2. Living without a proper diagnosis for months because it’s 99% not cancer, so “not urgent”.

3. Navigating the idiosyncrasies of the Canadian health system to get the help you need.

4. Finally getting a diagnosis: a cyst caused by a tropical farm-loving parasite, and being asked over and over again what my travel history has been since birth (get a chair!).

5. Learning medical jargon (which could qualify as learning a new language btw) because this is the only way to understand what options you have available to you.

6. Slowly realizing that major surgery (hepatectomy) is the only option available to you.

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For someone who’s tried to live on the healthy side of things all her life, monitoring my health over the past five months has been like watching a train wreck in a slow motion kinda situation where every car has been loaded with different types of explosives.

The seeds of this (or should I say eggs, because what I was dealing with was a parasite) were planted in my liver a decade ago or more, according to doctors. It’s a total guess where I could have picked up this parasitic egg from, as there’s little damning evidence of me 1. staying in a tropical country for a long time, or 2. working on a farm with dogs and sheep on them for a long time.

The five months I’ve been living this reality could have provided a lifetime of material for writing. At any moment I could have sat down and written whole newsletters about the crazy shit that just happened… but I didn’t. I’ve been too shell-shocked to write, to be honest. And now I’m at a point where I want to heal and recover from this. I don’t want to dredge up all the crazy shit I had to go through just because I went through it. But, I do somehow want to remember and honour the challenging time that I, together with my partner Michael, went through, and am still going through today.

So I’ve decided to take the time to write about the beautiful, poignant, touching and strangely humorous bits of this journey so I never forget them and the internet can enjoy them too for as long as they can be accessed. Enjoy.

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That time we gave the thing a name

“Oh, I see something alright!”

This was the only response I got when I asked the ultrasound technologist if they saw any anomalies in my imaging right after the procedure was done. My family doctor was expecting gallstones to be the culprit for my abdominal pain. It would take days for the digital report to come in, and when it did, and when I quickly scanned it, it was mostly a report of “Normal… Normal size… Normal…” except…

I stared at the measurements written in millimetres for a while, not quite absorbing the dimensions no matter how many times I read them. Oh, I’m quite familiar with the metric system. It was just that it couldn’t be right. It’s not physically possible that... There must be a decimal error somewhere…

It was early on that we learned about the grapefruit-sized mass in my liver. I’ve also called it softball-sized. Whichever analogy works best for you, the reader, I say. Either way, there was a huge three-dimensional thing inside of me, that shouldn’t be inside of me. And no one had any idea what it was. We needed an MRI for that, which is a whole other story…

The time before the official diagnosis was strange. It was strange to know that something was inside of me, though I didn’t know what. Sometimes, I could swear it was “communicating” with me. Pulses of discomfort emanating from under my right ribcage. Sometimes electric-like shocks. Sometimes a sensation of knocking, or stabbing from the inside. Every time it did something, I would tell Michael about it. He would often meet my narratives with sympathetic silence, because really, there wasn’t much that could be done. But at some point these communications were happening so often that I’d start talking back at it. “It’s doing that thing again”, I said, and I’d look down at my right abdomen accusationally: “Hey, you. What do you want from me? Why are you doing this to me?”

The personification process was completed when one day I heard Michael ask not how I was doing, but rather, “How’s the passenger doing today?” like as if I was the involuntary vehicle for this hitchhiking, noisy, irritating and sometimes batshit-crazy passenger that was stowed away in the depths of my hull.

Because yep, this name encapsulated exactly how I felt.

And from then on, the grapefruit-sized mass was officially named “The Passenger”.

That time we gave the other thing a name

It was the first appointment with the hepatopancreaticobiliary surgeon,
…aka my liver fixer.

Getting to this point felt like a milestone. Finally we were going to get some answers on how we were going to get this thing, aka the Passenger, out of me.

However, by the end of the appointment, I left with a totally different highlight.

But let me first tell you about my surgeon. My surgeon was a great fit for me. Imagine the most stereotypical TV-series depiction of a surgeon: exuding knowledge, certainty, expertise, and that much-needed charisma when talking to a timid “am I doing it right” patient like me. Every time I talked to him, I left our conversations with newfound confidence that all would be well.

This is exactly what I needed in a surgeon.

But I digress—back to the story. Somewhere in the middle of talking with the surgeon about the step-by-step procedure, plan As and Bs, querying about the size of incision, time required for recovery, and his experience dealing with this rare cyst that I have… we started talking about the condition of my liver and what it’ll mean to cut off a chunk of it that the cyst is attached to. I present to you a paraphrase of what he said to us, as it has replayed in my head so many times it is bound to have lost precision in words, but not accuracy in message:

“Livers are one of the only organs in the human body that can regenerate itself. From what we see on your MRI, your left liver lobe actually increased in size to compensate for the reduced functioning of your right liver lobe, as it was compromised by the cyst.”

My left liver lobe did WHAT?

My liver, without me knowing it, had been in my corner all this time? For years it somehow knew, and adapted to this blight in me before I even knew about it? It grew and just continued to do its work as best as it could, without a word and fuss?

Out of all the things we discussed during that appointment with the surgeon, this fact slowly rose to prominence in my mind, and I couldn’t stop thinking about it post appointment. I only started to understand how much this touched me when I told my writing group about it on our weekly call, and I actually started tearing up with gratitude. Like I am right now, typing this sentence. My poor liver, toiling on its own for years, just trying to keep me alive… I felt like I owed it everything.

So they suggested I give it a name, to honour it. Sure, I thought. We already gave the cyst a name, so why not the liver?

I thought about it for a couple of days, but was getting nowhere. One day, Michael and I were waiting for a while to see the doctor at Tropical Diseases (yes, this is what my parasite problem has been classified as by my doctors) and I told him about my not-so-trivial quandary of what name to give my liver.

“How about… Liv?”

“Nah, that’s too obvious. No?”

After a sub-minute silence, he said “…Oliver?”

And the vision of this head immediately popped into my head:

No not the cabbage head. John Oliver’s head.

I was so confused. I knew that Michael loved watching John Oliver videos on youtube. But why did he think that the name of a late night talkshow host would be a good name for my liver? After a good 10-second think, I looked over at him with the “I don’t get it” face.

And he responded “O… liver?”

… AH. And we laughed about the fact that of course it hit me like a Trojan horse and I did not get the joke/pun/gotcha until it was explained to me. I have a terrible track record of understanding jokes. It used to be embarrassing to not get jokes, but now I just own it, and I can laugh at myself for how daft I can be sometimes.

And because we had a hearty laugh about it, that kinda was what convinced me.

So yes. Henceforth, my liver shall be known by the name “Oliver”.

(Oh, and if I ever want to either title a more comprehensive piece of writing about my medical journey, or start a two-member indie rock band, I think “Oliver and the Passenger” would make for a decent name, don’t you?)

That time Michael agreed I could buy a mug*, despite us having too many already

From moment to moment between the first symptom, leading up to diagnosis, and then finally the surgery, was like experiencing a long quiet before the storm.

Actually, let me rephrase. It wasn’t actually quiet. It was disquieting. If “quiet before the storm” was a tarot card, it had presented itself in its reverse form. My condition was slowly worsening over time. More long-lasting fevers, constant discomfort, and low energy, overshadowed by paranoia about when my next debilitating abdominal pain episode would be. At the same time, while I knew I needed a diagnosis to get better, I was afraid of where the necessary solution would take me, which, by end of February we learned had to be some kind of surgery.

And as much as I needed the surgery to get better, I also totally did not want to go through surgery. Imagine having no option other than to break your body in permanent ways so you can get better again. Figuratively speaking, it was a tough pill to swallow, not to mention all the other literal pills I was on to keep the parasite at bay. (For context, I am now a proud owner of two of those fancy 7-day pill boxes you can get from the drugstore, because nowadays I’m taking at least 7+ pills a day. Also, I am legitimately terrible at swallowing large pills, terrified of choking on every single one of them. Not fun.)

Throughout this protracted period, instead of ruminating anxiously about where fate was inevitably taking me, I redirected my focus onto something totally different: beauty.

I wanted to ground myself in tranquility and contemplation. Art. Appreciation for the sublime. I would play Studio Ghibli piano music while reading a book, or watch lifestyle vlogs of artists musing about how practicing art intersects with being in the world on youtube. Though my eating capacity was reduced (remember that softball-sized cyst?) I savoured my food and drink even more. Every day I wanted to be able to reach for one tranquil moment where I wasn’t focused on the pain or my predicament, because I knew: things were necessarily going to have to get worse before they got any better. I figured I could achieve this by making sure my senses were surrounded by beauty in all shapes and sizes, and giving in to my intuition about what brought me that spark joy feeling that Marie Kondo wants us all to look for in our lives.

This brings us to one fateful day in January where I was browsing Instagram.

I look at IG maybe once a week. Sometimes I’ll do this thing where I go to the Search tab, searching for who knows what. I may not even have searched for anything, as Instagram just pre-populates with random content dictated by an indecipherable algorithm about what I like. But it seems to work because this is where I came across some lovely piece of ceramic. And I clicked through…

…and totally fell in love with all the things. 🌈

I looked to see if I could buy a piece for myself on their website, but alas, it was empty. Or rather, sold out. It turns out that the potter, Paula (@therainbowpotter), releases her pottery in small batches with pre-announced release date and time, and they sell out like BLACKPINK concert tickets. And every piece is unique and impossible to replicate, so once it’s gone, it’s really gone.

Argh. Ok. The chances of me getting a piece is very low, so I park the idea.

One day in February, and I believe it was destiny that led to this point, I open Instagram and see that Paula, in a couple of days, is doing one last batch before she goes off on maternity leave. Oh geez, she might be out of commission for a while! The date she’s releasing the goods: February 18, at 8pm CET. I put the time in the calendar, but now I had another task ahead of me: convince Michael to help me buy a mug, even though our mug cupboard was already super full despite our recent mug audit. And if there’s one thing he really doesn’t like, it is to buy things we already have a lot of… 😬 On top of that, these were not cheap mugs. €50 a pop 😬😬 plus €30 for shipping… 😬😬😬

All totally understandable hangups. But to his credit, he did not make too much noise about my earnest ask. Maybe he saw how much I adored the pieces, and also in context of how much suffering I had gone through health-wise at this point, he gave me a pass ❤️

So, on Saturday, February 18, 15 minutes before 8pm CET/2pm EST, we were sitting at his parents’ dining table, two laptops out, and I had coached him on which mug I wanted him to buy, and which one I was going for. Indeed, to spread our chances of success, I had each of us try to buy a different mug. And when the sales page refreshed with the goods (precisely on the hour!), we raced to the mugs, and started that adrenaline-infused online purchase ritual of filling out the forms as fast as possible, not knowing if the tickets mugs we were buying were already sold before we had a chance to hit the Purchase button.

(I had also read somewhere that because everything was happening so fast, one might receive a confirmation of an order, but it didn’t guarantee that you actually got the item, and so the definitive confirmation was only if you saw an actual withdrawal of funds from your account.)

So, we made the purchases (or thought we did). And we received confirmation, first from the website, then PayPal, then the courier. I was so afraid of being disappointed, I told myself to not anticipate receiving anything until it was actually in my hands.

Fast forward to mid-March. We hadn’t heard anything about the state of the packages until we got a note from our concierge (we live in a high-rise apartment) that a package had arrived for us. Upon seeing the parcel, I was horrified to see a very beat-up, dishevelled box. When I picked it up I felt that things were loose and moving inside the box. “Oh no”, I thought to myself, “prepare yourself to see it broken. And that is fine. You’ll still be fine, even if the mug is not.”

In hindsight, the amount of soothing and anticipation for disappointment I administered to myself might not have been necessary. But there were such few things that were going right in my life at that point that I had no space to just be excited, in fear of something going wrong. Until the very last bubble wrap was off the mug, I refused to give in to the plain happy ending.

But when it did turn out intact, and the mug was finally in my hands…

It was total bliss ✨💖🌈

The mug was just as delightful as I had imagined it.

*And guess what, a few days later a second parcel arrived, equally as beaten up but with another intact mug inside it. So basically we were so quick that we actually got BOTH mugs in the end!

Post-surgery, I was kept at the hospital until I was able to do basic things like sit upright in a chair and walk to the washroom on my own. On the sixth day I was discharged, and the slow and gruelling work of recovery continued at home. Mom was staying with us to help with cooking and chores.

This is where we established this ritual to make fresh masala chai every morning, served in this mug, with my favourite golden teaspoon. Studying its intricate glaze, smelling the tea, holding its softly curved profile in my hands… all was much needed distraction from the pain and discomfort of the 33 staples keeping my incision together, not to mention the internal shakeup my organs were still recovering from after the surgery.

I had the opportunity to thank the potter when she posted a picture of my mug on her instagram, which I’ve shared a screenshot of in the gallery below.

So. This concludes the story of how not just one, but two gorgeous mugs found their way into our already crowded mug collection, and the sheer joy that handcrafted things can impart on the senses.

1. The mug in my kitchen, with golden spoon, 2. My appreciation comment to Paula, the potter, when she posted a picture of the mug

1. The second mug, which I liked because it reminded me of the beautiful sunrise we saw in Iceland, 2. the actual sunrise we were driving towards in Iceland.

Wow, this letter turned out much longer than I anticipated! But I’m thoroughly enjoying the writing, which allows me to savour and appreciate the sweetness of these memories that happened during a time of my life that otherwise was pretty dark.

I don’t think I’ve ever felt so much, felt so human, felt so mortal in my life.

And if that isn’t worth writing about, what is?

So I’d like to rephrase what I said in the beginning about the trains, to this:

For someone who’s tried to live on the healthy side of things all her life, monitoring my health over the past five months has been like watching a train wreck where every car has been loaded with different types of explosives, played in ultra slow-motion and set to tranquil piano music to underscore that beauty can exist anywhere, even in destruction.

I have three more mini stories I want to write, so stay tuned for Part II.

Yours truly,

—Fei