I first heard the word on the day I went back to read my company checkup results. My white blood cell count was far too high, they said, and I should see a larger hospital. I went thinking it was nothing, and a few days later I was told I had chronic myeloid leukemia (CML). Standing in front of the word leukemia, my mind went blank. I had no pain, I was someone who went to work every morning, perfectly fine.
The doctor, to my surprise, explained it calmly. Fortunately it had been caught early, in the chronic phase, and these days many people manage it with a daily targeted-therapy pill. I just had to keep taking a drug (a tyrosine kinase inhibitor such as imatinib) that blocks the signal made by an abnormal gene called the Philadelphia chromosome. No hospital stay, no hair-falling chemotherapy. At the time it was hard to believe.
The first few weeks on the pill were honestly hard. My eyes puffed up, my legs cramped often, and nausea made it hard to get food down. Every time I thought about quitting the drug, I searched out and read posts by people who had lived with the same disease for years. As time passed, my body seemed to adjust, the side effects faded a little, and I found the knack of fitting the pill around my meals.
The most nerve-wracking thing is still test day. Every few months they draw blood for a molecular test that shows how much of that abnormal gene is left. The relief when the number on the report drops, the unease when it ticks up a little. I laughed at myself for riding the waves of such a small number, but when I thought of it as the report card of a fight going on inside my body, I simply could not stay indifferent.
Years on, I still take the pill every morning at the same time. At first the idea of taking medicine for life felt like a punishment, but now it is just a daily routine, like brushing my teeth. I have heard that some people, once the level sinks very deep, reduce or pause the drug for a while, but that is something to decide carefully with a doctor, so for now I am still walking my own path.
Looking back, this disease did not take much from me. What it did was teach me not to push my body recklessly, to stay composed in front of test results, and how precious an ordinary, unremarkable day really is. If someone newly diagnosed feels lost, I want to say: do not be too afraid. If you take the medicine faithfully and never skip the tests, daily life rolls on more steadily than you would expect.
This article shares one patient's personal experience and does not replace medical advice or a treatment plan. Please discuss any decisions about symptoms and treatment with your own care team.