Riding on a Rollercoaster, and Falling off It

Getting treated for acute myeloid leukemia is like being on a rollercoaster.

You get a round of chemotherapy and your blood counts go down. You stay in the hospital while your counts rise to the point that you are no longer neutropenic. Then they send you home to build your strength back up. Just when you’re beginning to feel like yourself again, they reel you back in for another round…to knock you down again.

You do this three times, or at least I did.

It’s not fun like some people might consider a rollercoaster ride to be.

And it’s not easy.

Down, up, and back down with leukemia treatment

If you are lucky enough to have no prior serious illness, you expect that after you get sick, say, with the flu, you will get better and be done with it. But with leukemia treatment, as soon as you feel better, you have to go back to the hospital to be made to feel sick again.

Of course, although you may feel better, you might not actually BE better. My doctor told me it’s like cleaning a rug, or a carpet. It might look clean on the surface (no leukemia cells) but some might be hiding underneath. Hence the need to go after them again. He said it was like flushing them out, or washing underneath the rug.

Unlike being on a real rollercoaster, where you go up and down, you go down first, then up, then down, and so on.

You are at the bottom after the last, strongest round of chemotherapy has wiped out your bone marrow. That’s when you get your stem cell transplant to eventually lift you back up again.

I didn’t make it any easier on myself.

After my first round of chemotherapy, I THREW MYSELF off that rollercoaster.

Throwing myself off the rollercoaster

Actually, what I did was throw myself down on a hard tennis court. Not on purpose, mind you. I did it by chasing after a ball and tripping over my own feet.

I had gone home after my first round with my Hickman catheter implanted into my chest, near my collarbone. It was a double-lumen catheter, meaning two long tubes dangled down to near my waist. I had to take care of it by flushing it every day.

Near the end of my few weeks at home, when I felt well enough to play a little tennis, I tucked the ends of the catheter into my exercise bra and went out onto the court with three friends for a game of doubles.

One of my opponents hit a ball that was just out of my reach. I ran for it. I stumbled. For a split second, I tried to stop myself. When I knew that I couldn’t, I tried to protect the catheter. I crashed down onto my shoulder.

The catheter was OK. My shoulder was not. Searing pain shot through me.

Learning to roll with the punches

A friend rushed me to the emergency room. I put on a mask and gloves to protect my fragile immune system.

The doctor who saw me said my shoulder was separated. He said to ice it and wear a sling.

The next day, I went back to Dana-Farber for my second round of chemotherapy. This is called consolidation.

My doctor looked at me and asked, “What did you do?”

When I told him, he shook his head.

Later, back home, I bumped into Mount Holyoke College’s tennis coach. I told him what had happened. He told me that when you fall, you need to roll, not crash.

Throughout my treatment, I at least learned how to figuratively roll with the punches.

I can’t say that my actual falls have been more graceful.

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