1.
The Emperor of All Maladies by Siddhartha Mukherjee.
I first started reading it after I’d transferred out of biology, funnily enough. It helped pass the time while I camped out with my parents or my uncle in my grandfather’s hospital room.
By then, we already possessed an unwilling familiarity with the basic vocabulary of cancer: the different stages and what it meant for my grandfather’s illness to be at Stage 3; the different grades and what it meant for my grandfather’s tumors to be classified “high-grade”; the different treatments available and what they meant for my grandfather’s chances and quality of life.
The book helped add context. I suspected, at the time, that reading was a desperate attempt to sustain an illusion of control: understanding more of the mechanisms and history of the disease would be my small part in helping my grandfather confront it.
In retrospect, it feels more like an oblique approach towards acceptance. None of us actually wanted to articulate the enormity of the disease, because that was tantamount to admitting how paltry our options were.
So, for the longest time, I let the book do that for me, under the guise of expanding my ability to navigate the situation. It was a clear, cogent map of cancer: the slow evolution of science’s understanding of it; the lulls and wrong turns and significant leaps forward in terms of treatment; and how, ultimately, all of this still fell short of any definitive cure.
There’s a quote that’s become attached to my memories of this book:
“The best thing for being sad … is to learn something. That’s the only thing that never fails.”
T.H. White, “The Once and Future King”
2.
One of my aunts — my godmother — died last year.
She was my mother’s cousin, one of the daughters of my grandmother’s favourite sister. She was at my grandmother’s house at least once a week, sneaking us Maltesers and See’s Candies, spiriting us off to their house in Batangas to go swimming on the weekends. She had the same travel bug as the rest of that side of the family, jetting off to a new country every year and bringing back suitcases of pasalubong each time. Every Christmas, there would be a pile of gifts by the tree, all tagged with cards written in her firm script.
The week before my mom’s birthday, I got a message from her saying that my godmother had been hospitalised. Metastases in her intestines; none of us even knew she was sick. She was scheduled for surgery the next day.
After the surgery, her doctors said, once she had recovered her strength, she would need to undergo chemotherapy.
After the surgery, she had a stroke. After the stroke, she caught pneumonia. After that, the week of my mom’s birthday, the family gathered for her funeral. They sent me updates on WhatsApp.
This Christmas, there was more space around the tree because we no longer had half of the gifts that would usually be there. Everyone still tiptoed around it anyway.
What did I learn between one loss to cancer and the next? Nothing that helps make anything easier, to be honest.
There have been more in the years between, of course. Different diagnoses, different stages and grades. I can’t recount them all.
I started re-reading the book again last year, and finished it again just last week, during the first weekend of the new year.
In the book’s last chapter, when Mukherjee charts the latest efforts to advance targeted cancer therapies by sequencing the disease’s genome, he emphasises the gulf between understanding and treatment: Identifying particular biological mechanisms and pathways that drive the disease is one thing, but translating that knowledge into therapeutic strategies is another challenge altogether.
More so because each cancer genome, as genetic research has now validated, is unique. Or, as Mukherjee put it, in what probably wasn’t a jab for me in particular but felt like one anyway, “Normal cells are identically normal; malignant cells become unhappily malignant in unique ways.”
This heterogeneity is part of what makes the disease so intractable. Funny how, emotionally speaking, it’s the apparent homogeneity of outcomes that makes cancer so daunting.
3.
One of our friends had been uncharacteristically silent online for weeks. We were all in different countries. The fastest way anyone had to physically check up on him was to book a 1.5 hour flight and cab over to his apartment.
We had, instead, tried various messaging and social media platforms, but received no response. For a while we thought he was just on some kind of digital “detox,” as some people in our friend group have done from time to time.
When we eventually got hold of one of his friends who lived in the same country, we found out that he had been in the ICU, in a coma, for over a month. There had been some kind of issue with his brain; he was awake now, but had some speech and vision problems — the details remained hazy.
He is awake, but slow to recovery, came one of the first few updates. The family will move him to another hospital once he is doing better.
He’ll get discharged tomorrow, was the next update. He can see better now, but still has some speech delay.
Do they finally know what the diagnosis is? one of my friends, based in the Netherlands and evidently staying up for news, replied.
There’s inflammation on his brain, but his mother didn’t get what kind of virus. The doctor isn’t here so I can’t ask the details.
No problem, our friend replied. As long as it’s not tumour/terminal stuff, I’m a lot relieved. Guess we all are.
Then, towards the end of November:
He seems to be healthy enough to use social media again!
Yes, I can call and talk to him last Saturday.
Good!
He reacted to one of my IG stories earlier this week. A heart emoji on a story of me and another mutual friend having ice cream — his favourite food.
He always has a freezer full of ice cream at home. Famously exercise-averse, he will walk countless city blocks for a good ice cream shop recommendation. One of our mutual friends’ favourite stories is how they spent evenings eating ice cream at various convenience stores in Taipei, in the middle of winter, with him dressed only in shorts and one of his signature hoodies. They were together on a work trip then, visiting other colleagues who had also become friends. When this mutual friend and I visited other such colleagues-turned-friends during one cold spring, we sent him a postcard bought from the ice cream shop in Edinburgh, an Instax from the gelato shop in Amsterdam. We had gelato together when he visited Singapore, a few months before he went radio silent.
The last time he had reacted to one of my stories was a month before everyone stopped hearing from him, on a photo of me and our mutual friend going pottery painting.
A heart emoji and: That’s a cute cat!!!
Thank youuu, I’d replied. Come over again soon so we can make more cat plates together haha
And now, to his latest heart emoji: HOW ARE YOUUUUU
I hadn’t expected him to reply. Our mutual friend and I kept talking about our holidays, catching up on how our year had started. When I got the notification that he’d sent a message, we excitedly went to check.
I just got better, he’d typed back. Ever the optimist.
I had 5 tumors the past months
In the brain
Doctor said it’s Stage 4
To our question about whether it would be okay to visit, he answered, Maybe once I’m back in Jakarta. Ever the optimist.
Why do bad things happen to good people? It’s a cliche question, but when you’re in shock, I suppose, nobody has the energy or inclination to be original.
Another one, this time from our friend in the Netherlands, on a call past midnight our time, as we figured out what to do: Why is growing up so hard?
I had turned off my Kindle that was still on the last page of the book I’d just finished, the tail end of the index:
X-rays, 23, 24
– as carcinogen, 77-78, 347, 349, 389
– as diagnostic tool, 291; see also mammography
We were trying to write an index of our own this time, halting, uncertain. What we could do; what we knew and didn’t know for sure about our friend’s condition; what we knew and didn’t know about what he would want, in a situation like this.
The key conclusion, of course, was that we couldn’t just try to take action for the sake of feeling better about doing something. We had to support in whatever ways (a) were feasible and (b) would actually be helpful and welcome, and wouldn’t stress him out further.
The reality, of course, was that this made for a dismal Venn diagram.
“There’s not much we can do right now,” our friend in the Netherlands summed up. “And we are running out of time.”
There’s a quote from the book itself that has stuck with me on every reading. It encapsulates that gulf between understanding and practice, at least for me:
“What is certain, however, is that even the knowledge of cancer’s biology is unlikely to eradicate cancer fully from our lives … [W]e might as well focus on prolonging life rather than eliminating death. This War on Cancer may best be “won” by redefining victory.”
I understand this. The past twelve years have been an education, protracted and difficult, on this.
But, in practice: How do you wait for the clock to run out on someone you love and call that victory?
