Last Step

It is more than slightly intimidating to go into the room through the big sliding door and see everybody dressed up in full-on green surgical garb with masks and hair nets. I don’t remember this part. Feeling a little vulnerable, I change my clothes.

I ask to listen to my iPod during the operation — I remember being able to do this during the operation four long years ago when the subject of today’s surgery was inserted into my shoulder — but the nurse(?) says it’s best not to do that because they’ll be using something electric to stop the blood. Instead I can listen to music played from a computer in the operating room. Well, okay then.

She escorts me through a bunch of twisty little passages to said room. The computer is a dual-screen Windows XP. The nurse shows me that there is a folder with random albums sorted by year. I poke through the folders and create a playlist in Windows Media Player interleaving 1989 with a collection of classics from 五月天(Mayday). Then I get on the operating table and wait. One of the nurses compliments me on my choice of the latter band. A few tracks later, I deduce that my interleaving had been to no avail because the media player was set to shuffle. I spend a lot of time on the operating table at first not doing anything except stare at the ceiling. There is a white three-legged contraption there, with each hinged limb ending in a large blue-rimmed circle of surgical lights. There are white sans-serif letters inscribed on the rims, saying Chromophare® E 668 and Berch-something. I think the “something” was a synonym for “say” or “tell”. An after-the-fact search says it’s Berchtold. Typical human memory.

Later I am covered with lots of green cloth, which blocks out the ceiling. Instead, I can only see a clipboard and random paper forms on the left side of my peripheral vision, presumably propping up the cloth. The clipboard is a highly translucent pink. The form on top is yellow and has a box saying something about somebody paying; the form on bottom is white with a black-and-pink-striped right border. The clipboard’s clip also has random streaks of black marker across a white sticker.

Music plays.

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I couldn’t remember how long it had been since we entered the ninth floor. Somebody had covered the elevator area with cartoon animals and landscapes. Not surprising, since all the children’s wards were here.

Funny idea, that: I am still a child for medical purposes.

I was not sick. Not more than usually, anyway. I didn’t need to get an IV drip installed or even change into the patient uniform the first night. There was nothing to do or feel. No guilt or fear, unlike last time — this check-up had been scheduled for along time and served as a simple test to see how my bone marrow was doing. No annoyance, either, because I knew it mattered; but no apprehension of the results, or of the needles. You can never get used to the needles, but you learn to just accept them anyway. There is nothing to be done about them.

Who knows? The result could be something bad. But I know enough not to take this hypothetical seriously before it was anything other than hypothetical.

I slept, and dreamt of vomiting carrots.

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If everything goes well, last Thursday was the last vincristine and dexamethasone treatment.

Behind the big generic drug names, what this really means to me is that these couple of days will be the last serious suffering: the last segment of abstract unjustified misery, the last random bout of lack of energy, the last bits of spontaneous back pain — but also, the last opportunity to blame any of those bad feelings on an external chemical source. The last milestone like this was my final lumbar puncture. At last, the regimen is transitioning to the final movement — and what a transition!

Wednesday morning — the guys from the Jubilee Project visited our school, showed us a few videos, and told us their story. Afterwards during lunch, we got to sit with them in the teachers’ office and talk. From what I remember, these guys gave up medical school, a successful business career, and a job organizing Asian-American outreach under Barack Obama to form a non-profit organization to make charity and inspirational videos full-time. I think the story speaks for itself.

It’s nice to have a reminder not to limit oneself and dwell less on high-school matters. It’s a long story, but Ms. Lin coaxed me into saying something about competitions and their replies were roughly, “Wow, I got, like, a 1 on the AIME.” Who cares about high-school achievements when you have beautiful dreams? But before I get too deep into angsty personal reflections, let’s leave it there…

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Over the last couple of days I caught a cold and felt really miserable. I’m not fully over it yet, but I have medicine and the worst is over. That’s all.

In perspective, it’s nothing. Given all I’ve been through, it’s easy to be optimistic. After all those nights spent imprisoned in the hospital, now I know how wonderful it is just to be able to wave my arm without something (or several somethings) plugged into it, and to walk around without dragging a gargantuan IV behind me. I don’t think about this often, but when I remind myself of it, it resonates. I remember living for nothing more than the day I could get rid of all the hospital gear, get home, and start feeling normal again.

Now I guess it’s pretty nice just to be able to breathe through my nose, too. This certainly wasn’t my first cold where I felt that sense of desperation, though. Perspective changes so much about the world.

More Blood

I thought it was over. I thought the rest of treatment was just enduring the meds that came at me until the time was up, and after a year or two I could officially move into, and then immediately ditch, the status of “cancer survivor”. I used to tell myself I didn’t talk about it because privacy and all that, but I realize that I didn’t care for this issue. Normally, I try to ignore the fact because being sick automatically makes me feel extra weak and incapable, while at the same time conferring a kind of superhuman courage I don’t have. Courage is standing up to things, fighting the tide when other people couldn’t and it’s actually practical to give up. All I did was endure what came my way, and I know there are people who have to suffer much more every day than I do. For me, I could really pretend to manage life normally most of the time. What I expected was to put more and more of my focus onto school and competitions, until after a year or two the schedule just faded out of my life.

When my body and mind seemed to feel generically crappy, I knew what was wrong, and I knew it would come and go inexorably. But no, there’s more and it ends with me resigned to starting, and probably spending entirely, my coming birthday in the hospital.

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Lumbar Punctures

Cycles. Twice every four weeks, milling about the hospital for three hours to receive a single shot. Then once, spending those three hours strapped to a chair with an IV stand instead. And finally yesterday, the blurry seven-hour spinal skewer of an ordeal. I don’t talk about it on the Internet much… always been unsure if this is necessary, but it’s always easier to reveal a secret than to take it back, and I still don’t feel like it’s a part of me, just something that happened to happen. For one year, two months, and going strong.

There I was lying down for the required six hours after doctors messed around after my central nervous system a.k.a. spine. Mixed emotions; as taxing and nauseous as the experience is, it’s the last occurrence in the chemotherapy plan. One monster of a box ticked off, one step closer to the “normal” life of more than one year ago… or, to me right now, very unfamiliarly unrestricted. I can’t recall in full what it feels like to practice a chair freeze on the dancing room’s sweat-laced wooden floor… to gulp down a wasabi-smothered piece of sushi and then have to perform jumping jacks in response to the flavor… just to stroll through a park or a nature path like a normal guy, without having to worry about a mask.

Then the day after, now, I had an extra day’s stay for a CT scan. Even in the mere hour I ended up needing to wait for the installation of the killer-thickness needle — which I’m actually getting right now as I’m typing this sentence, and it is hideously, hideously, nasty to endure — I feel inklings of the oppressive dullness of hospital life again. To imagine, according to the doctor, I wasn’t supposed to be back in school until this point in the schedule!

I had hoped or maybe expected that I would have become desensitized to the pain, the interminable poking and prodding that I’ve been designated to suffer, by now; but still, every one of these experiences is just as difficult to get through as the last. But now the worst parts will be behind me forever, if my luck holds up. I don’t know if I dare hope for any more good fortune, though.

Whatever happens, life goes on. Before I know it (in four days, to be precise), I’ll be sucked into the next challenge, fighting for something different, something I understand why I’m battling for. Until then, there’s not much more to do than grit my teeth and resign myself to the perfectly typical homework load.

Last hospitalization ID band...?

‘Cause there has always been heartache and pain
And when it’s over you’ll breathe again
You’ll breathe again…

Fairy Tale

I don’t know where to start.

First there was a headache. No biggie, sleep it off. But it’s easy to lose yourself

The pain, the random gusts of nausea, confusion, irritation… it’s another person in this body, speaking a foreign language I can’t even begin to fathom

playing by his own rules, won’t let you figure them out. his kingdom, and there’s not even a way to surrender or take the path of least resistance. Every path looks the same from here

blackness, vagueness, shadows, defying all interpretations

Life used to be a fairy tale. All there was to do was push buttons. Take these pills, write these words, read this book. Figure out what’s the right thing to do, the hidden or implied message in the story, because the answer is obvious. You’re the same as the rest of us, probably, share the most basic values and concepts of what’s right, what’s good, not a psychopath or sociopath, so on and so forth. You know how to prioritize. You know the future matters and that it’s best to prepare for it. You know about consequences.

Now, every decision is a standoff, with even votes and no end of supporting evidence from either side. Can I push myself any harder and preserve my sanity? How hard do I have to try? How do I tell where the limit is?

I know I should give myself slack but I know that if I overshoot I’ll have wasted time and energy and disappointed myself, and every time getting back on track is a little harder. And sometimes there’s no place to escape to. Everything is a dead end: idling, games, sleep, glossing the front page of the internet or just hitting a pillow. Lose-lose situations. A sea of homogeneous, impenetrable murkiness.

I wish I had something higher to turn to, draw the lines for me, tell me how to aim and how to shoot, give me a guarantee that the plan would work out and that it would be the best way to do things for me. But there isn’t. No hints in this adventure; that’s not how life works. And I don’t even know if any of this experience will apply even once elsewhere. Life is supposed to be about learning from your mistakes but right here, right now, I’m struggling to tell even what a mistake is.