MEITL: Laughing while living with cancer

Throughout my life, my sense of humour has always helped me survive even the roughest of times. Being witty helped me gain more confidence, make friends, and achieve success in my career – whether I'm creating content or speaking on stage.

So why should becoming a mutant and living with cancer make me lose my sense of humour?

Wait, did I just say I'm a mutant? As in the X-Men?

Well, I am. But I only discovered it last year, and it changed my life overnight.

On 17 July 2023, I was diagnosed with an extremely rare (global incidence: 0.05-0.2 per million) peripheral T-cell lymphoma called monomorphic epitheliotropic intestinal T-cell lymphoma (MEITL).

No one knows what causes MEITL. Only that it comes with malignant cells bearing various genetic abnormalities. Thankfully, it's genetic but not hereditary. I didn't inherit it and, thankfully, it won't be inherited from me. Just a random thing.

The challenge is that since MEITL is so rare and so new (the World Health Organisation first defined it in 2008, but reclassified it in 2016), it has no standard treatment.

"Because MEITL is so rare, there are no steadfast treatment options. However, treatments are based on treatments that have been the most effective in other T-cell lymphomas, or in people with lymphoma that have similar genetic mutations. With more clinical trials, we hope that new and effective treatment options will be identified to standardise the treatment for people with MEITL."

My gastroenterologist was the one who gave me the results of the fourth biopsy that confirmed I had MEITL. MEITL, which is hard to detect and properly diagnose during the early stages, had passed my first biopsy in another hospital. It also remained undetected by the first three conducted in my current one, which is one of Malaysia's best hospitals and a regional leader in cancer care.

Baffled, the lab requested my gastroenterologist if they could use the special biopsy test specifically design to detect the MEITL genetic markers.

And it did.

Of course I was shocked. My gastroenterologist and I had thought this was a gastrointestinal issue. This isn't surprising because MEITL exhibits the same symptoms, resulting in frequent misdiagnosis.

My gastroenterologist, who is a brilliant and empathetic doctor, said he was truly sorry for the bad result. He said he had made an appointment for me with his colleague, my now beloved haematologist, who would see me the following day.

I thanked him and walked out of his clinic in a daze. And my first thought honestly was not about what was going to happen to me, but how I would tell my wife. My wife has always accompanied me to every doctor appointment and medical treatment, and also spent time watching over me every time I was confined, before and since that day. Even though she has a full-time job with a regional role.

This was the one time she had an important meeting that absolutely had to be conducted face-to-face in the office. One that couldn't be rescheduled. And I had no idea how I would tell her.

My second thought? How was I going to tell our daughter?

Since I didn't know if my wife was still in a meeting, I decided to just message her. I relayed the bad news and said my first appointment with the haematologist was scheduled for tomorrow. Then said I would just go down to the hospital café to have lunch and digest this new development along with my food.

But before going down, I did what I knew I shouldn't have.

I consulted Dr. Google.

I was shocked by the poor prognosis and high mortality rate. And frustrated by the lack of information on MEITL. Mostly academic journals and case studies. I understood that the dismal numbers were because of the small sample sizes, which of course skews, for example, the median overall survival.

In fact, the biggest sample size was just 71 patients (36 males, 35 females, median age 67). They were "seventy-one patients diagnosed with MEITL between 2005 and 2021 according to 2008 or 2017 World Health Organization classifications".

But it was hard to be comforted by this knowledge when you're the one who has this unheard-of disease and have no idea what stage it's in, since it was supposed to be a very aggressive lymphoma.

While I was at the café, my wife called and asked where I was. She told me to wait for her because she was taking a half-day leave and going to me.

Then she said: "Whatever you do, don't google it."

"Um, sorry, too late," I said.

Which of course didn't surprise her.

When she arrived, she comforted me and said we were going to fight this. We had no idea what MEITL was. Or what stage this was. Or how much time I would have.

But we agreed that I would spend that time wisely. That I would live one day at a time. And that we would create more happy moments and memories with each other and with our daughter. I am lucky to have a wife like her.

The following day, 18 July 2023, was Day 1 with my haematologist. And I was delighted that he was also a brilliant and empathetic doctor. In fact, one of the leading experts in his field.

What I really liked is that my doctor calmly gave an overview and a clear game plan. He was genial and made me feel like this cancer journey was a collaboration from the start. Plus he explained everything like a professor. This kind of empathetic yet intellectual approach was exactly what would resonate with me.

It helped that my dream when I was a kid was to become a scientist. I still love science and technology, including intellectual curiosity about medicine.

So even though MEITL was my disease, I still found it fascinating to gain new knowledge. Particularly the almost science fiction-like aspects of MEITL and the different drugs and other treatments.

Such as the pegfilgrastim pegylated granulocyte colony-stimulating factor that I would become acquainted with after my first chemo cycle.

What I liked even more is that my doctor was brilliant yet humble. He reiterated that MEITL has no standard treatment.

"We're both learning as we go," he said.

Which meant that while we had a clear game plan, we should expect to reassess, recalibrate, and revise, depending on what actually unfolds.

It's not just because MEITL is still unknown territory, but also because each patient has an individual reaction to the chemo drugs, and the treatment that will then be needed for side effects and complications.

I'm not going to lie. In the early days, and even now from time to time, I would get depressed because of this MEITL. I vowed, however, that this cancer wouldn't stop me from spending more quality time with my wife and daughter, and from enjoying life.

Why should I waste my precious time on self-pity, when I could spend it doing things that spark joy and give meaning to my life?

And, while I still can, share my knowledge and use my skills to continue helping to build a better world, because I'm a longtime champion of technology for good. Which is why, even though my MEITL still isn't gone after my eighth and final chemo cycle, I decided to return to the world of web3 and further embrace AI after a 10-month hiatus.

In fact, I ended my sabbatical and resumed the role of Head of Content of Playfix.io, a startup that offers an advanced AI platform for Web3.

Sure, I now need a wheelchair when going out and suffer from chemo brain. Technology, however, allows me to remain productive and continue supporting the digital revolution that I've been championing since the last millennium.

My sense of humour has been my constant ally in dealing with my new normal of living with cancer.

When I was starting out my chemo treatment, I bought a T-shirt with the funny statement: "Secretly Hoping Chemo Gives Me Superpowers."

After all, I’m a mutant now. Somewhat fitting, because I’m a comic book geek and have loved the X-Men as my favourite superhero team since childhood.

After I recently posted this photo again, wondering what superpower I'll get, a friend said it was fascinating to think of a world where MEITL patients like me developed superpowers and banded together to do good.

Inspired, I coined a new superhero team meaning for MEITL: Mutant Elite International Transformation League. Then said that if, as they said, storytelling has always been my superpower, what secondary mutation (it's an X-Men thing) would I get. A secondary mutation happens to an existing mutant. It either enhances that mutant's existing superpower, or unlocks a new secondary superpower.

Sure, it might sound silly, but I'd say it's better for my mental health to laugh and still have fun instead of bemoaning my faith.

Some people find it hard to believe how weak I am now, both in physically and medically. My blood counts are quite low because of the ongoing immune system attack on my bone marrow, which is dysplastic. This means that the new blood cells that my bone marrow is producing die before they can mature and be released into the bloodstream.

As my haematologist reiterated, my weight loss and low blood counts are not primarily due to food consumption (though that contributes), but because of blood production. This problem won't stop if the immune system attack on my bone marrow continues.

Should I mope, then? Complain on social media? Look miserable? The way I see it, I can't control the fact that I have cancer. But I can choose how to react. To keep smiling. Look like my normal geeky self when I share photos of myself online.

I keep things geeky and witty because that's really who I am and people know that. Cancer isn't going to stop me from being me.

Not only that, but I'm also still doing the things I love and using the talents I'm fortunate to have. I write, play games, create content, host and join Spaces, actively participate in web3, and try to be as helpful to others as I can.

Living with cancer is already a challenge. Why so serious?

Of course, it works for me because this is who I am. I'm a geek and a gamer. I have a quirky sense of humour.

What works for you may be different. But I hope you'll also have a lot of fun doing it.

Cancer isn't a death sentence. So I will keep praying, smiling, and fighting until the end.

Who knows, maybe like Pokémon, I will just faint.

Or since I've been a gamer for so long, respawn.