CML — The Whole True Thing

The diagnosis. The pill. The Philadelphia chromosome. What it took and what it gave back.

I have CML. Chronic Myeloid Leukemia.

That is a sentence I have typed and deleted and typed again more times than I can count. Not because I am ashamed of it. Because I am still learning what it means to say it out loud.

CML is a cancer of the blood and bone marrow. It is caused by something called the Philadelphia chromosome — a genetic mutation that produces a protein called BCR-ABL, which tells blood cells to grow and divide when they absolutely should not. Before 2001, the five-year survival rate was around 30 percent. Now, with targeted therapy, it is over 90 percent. I take a pill every morning. The pill works. I am, by most measures, a person who is managing a chronic condition rather than fighting for her life.

I want to be honest about that, because I know what the word cancer does to people. I want you to hear it and not spiral.

And also: it is still cancer. It is still a diagnosis that arrived on an ordinary day and divided my life into before and after. It is still something I will take medication for indefinitely. It is still something that changed, in ways I am still discovering, how I relate to time.

Here is what the diagnosis actually did:

It removed the option of waiting until later.

I had been waiting until later for several things. A marriage that was not working. A version of myself that I had built around someone else. A life that looked right from the outside. There is a particular kind of inertia that comes from being in something that is wrong but survivable — you keep going because stopping is hard and later seems like a reasonable time to deal with it.

CML said: there is no later. There is now.

Within the year I began divorce proceedings. I began building things I had been meaning to build. I began dating again for the first time in almost two decades. I made eleven journals. I started a brand. I named it after my kids.

I am in treatment and I am doing all of this. I take a pill every morning and I go live my life. The pill costs approximately one million dollars a month at list price. My insurance covers it. I treat it like a vitamin. Science is extraordinary.

What I want people with a new CML diagnosis to know is this: it is survivable. The survival rates are genuinely good. The treatment exists and it works. You will learn words like molecular response and BCR-ABL ratio and you will understand them. Your every-three-month bloodwork will become a rhythm. You will keep living your life.

And you may find, as I did, that the diagnosis gives you something you didn't ask for and cannot get any other way: a completely different relationship with time.

I did not ask for this. I would give it back immediately.

And also: I am grateful. For the clarity. For the permission to stop waiting. For the reminder that the whole picture is so much bigger than the things I was afraid of.

That is the whole true thing. ❤️