Riding the CML Train: Destination Unknown

Even if you are on your own, you can take this blood cancer journey. Not everyone has a big, smiling support group on the sidelines cheering them on. That’s okay. Cheer yourself on.

On your bleakest days, stop and think of your trip so far. It will remind you how far you’ve traveled. And, it will give you hope that wherever the road leads, you’ll manage.

Look at it this way, like any other day, you board a train. Let’s call it the CML Express. (Or, if you prefer, the #9 or #22 bus, in your car or plane, CML Air).

Reaching my destination

But today is different. You get off at the wrong stop and have no idea where you are. How scary! Rather than wander around in this unknown territory, you spot a kindly stranger. What would you do? Let’s say your GPS is broken and that you are a woman. You’ll ask for directions. (Sorry guys, I’m playing into stereotypes).

It turns out this kindly stranger is a doctor called Dr. Phil (No, not that one. His full name is Philadelphia Chromosome — sorry, couldn’t resist). And, he is standing there to talk about what you need to do in order to reach your destination.

The doc tells you what route you should take and the possible detours and roadblocks you may encounter along the way. It’s important that you listen closely and, if necessary, ask him to repeat something just to be sure you get the correct directions. You don’t want to stay lost after all.

Avoiding the potholes

Next, he may give you tips on how you can avoid some of these potholes, broken tracks, and other setbacks on the route. You get back on the train (bus, car, or plane) and chug along. Just like Dr. Phil predicted, it’s far from a smooth ride. You’re desperate to get off and go back to the days when you used to walk easily to your destination. But you can’t. Your route has been changed. It’s so frustrating! Nonetheless, you can’t do anything about the situation so you climb aboard again and ride on and on...

People often say that living with leukemia like mine, chronic myeloid leukemia, is like riding on a roller coaster—lots of ups and downs and hills to climb before you come spilling down again.

There can be false starts (“Gleevec,” didn’t move you far enough along on the journey). There can be a lot of uncertainty if there are dark tunnels on the tracks. (Why are there rashes, fatigue, aches, and pains, etc. Is it the “Sprycel?” What is the cause?) Sometimes the twists and turns make you downright scared and nauseous. It’s a wild ride.

A new perspective

When the time comes when you flip upside down, you can see the world differently, with a new perspective. When the rollercoaster car rights itself again, give yourself a hand. Reflect and give yourself credit. Look how far you’ve come. You are surviving despite the road ahead of you being torn up and re-vamped. You are learning how to travel in a new way.

But, over time, you will start to realize something. You are not alone. If you open your eyes to it, you’ll notice that there are other passengers riding on the train too. They are taking the same journey. You can find them here.