Conversations With Myself About Relapsing ... Or Not

It’s a good thing I live by myself, because I sure do talk to myself a lot.

Or do I talk to myself a lot because I live alone? It’s one of those classic “chicken or the egg” questions.

Talking to myself about relapsing

A favorite topic of conversation between me, myself, and I is whether I am relapsing. Since my blood cancer relapsed twice, it’s not an outlandish concern. But you can’t let yourself go crazy chasing every possible sign to its most dire conclusion.

A friend who came to visit me in the hospital when I was getting chemotherapy in 2003 brought me a little toy car. I played with it in the hospital, pulling it back a few times and then watching it zig-zag forward on the floor. It wasn’t just for me to play with though. This friend knew my potential for getting carried away. The toy was to remind me to keep the car on the road.

Fatigue especially makes be worry about relapsing

The car can easily go off the road when the question of fatigue comes up. Fatigue can be a sign of leukemia, but it can also be a sign of overdoing it.

“I’m so tired, I wonder if I am relapsing,” I might say. If it’s a good day, smart me might point out, “You are tired because you just played two hours of tennis.”

Wondering if my spots are petechiae

I came through with flying colors the other night after a moment of panic threatened to derail me. When I got out of the shower, I noticed a constellation of small red dots of my thigh. I stared it down, as if daring it to say its name. But I was the one who did the talking.

“It’s not petechiae, it’s just bad skin,” I said to myself.

I needed convincing, so I said it again, louder. “It’s not petechiae, it’s just bad skin.”

I’m not sure what the technical name for that patch of “bad” skin is, but I do know what petechiae are... and they are more diffuse than my tiny patch.

It is pronounced PUH-teek-E-eye. For something so serious, it’s a funny-sounding word.

To me it sounds like something you might put in your tea, like so: “How many lumps of petechiae would you like in your tea?”

Here’s what they really are, according to the Cleveland Clinic:
“Petechiae are pinpoint-sized spots of bleeding under the skin or mucous membranes. The purple, red or brown dots are not raised or itchy, and they’re not a rash."¹

Are my platelets low?

So why was I telling myself it was “just” bad skin? Because petechiae can be a sign of low platelets, and that can be a sign of blood cancer. They were for me at my 2003 AML diagnosis, along with low red and white blood counts too. At that time, and when I relapsed in 2006, real petechiae covered my thighs. I would often need a platelet transfusion.

I remember the hospital admission when I only had three platelets. I asked a nurse if I could bleed to death. She said no, highly unlikely, but I should avoid bumping into things, out of concern for extreme bruising. I was scared to move, scared almost to breathe.

Three was just an abbreviation, but it made an impression on me. It wasn’t JUST three platelets, but rather 3,000. Still, that’s not very much to work with, when you consider that the normal platelet count is 150,000 to 400,000 platelets per microliter (mcL).²

Maybe it's skin cancer

Now, on to my relief at having “just” bad skin. I have had so many squamous cell skin cancers removed that I lost count. The “bad skin” is partially a problem of my own making. I wrote all about it over at skincancer.net. I spent too much time in the sun, without any sunscreen on. I lay on the beach, my skin glistening from the baby oil. I scoffed when my mom said to cut it out. I ran and played tennis. I was a lifeguard. My skin is fair.

Because of my stem cell transplant, I was on prednisone, an immune suppressant that let some of the skin cancers in. I am not alone. Research has shown an increase among transplant patients of “cutaneous neoplasms, such as basal cell carcinoma, squamous cell carcinoma and melanoma.”³

I had one basal cell (in my ear), and the rest have been squamous cell. I’ve had them literally from the top of my head to the side of my foot. I can recognize the signs: little pieces of flaky skin that don’t heal.

Today in yoga, while I was winding down and supposedly relaxed, I noticed a tell tale piece of flaky skin on my calf. It looked a little darker than they usually are. Without knowing I was doing it, I started picking at the dark part. Subconsciously, I must have thought that if I picked at it and the black went away, it wouldn’t be melanoma. I gauged it with my fingernail. The black came off. It left a little bloody spot. I was embarrassed. YOU DO NOT WANT TO GO PICKING AT YOUR SKIN. You could get an infection. It was the internalized voice of reason.

Trying to calm my anxiety

I had bought myself some fidget toys to try to deflect the anxiety. One was a squishy blob. The other was a puzzle that I promptly lost. So far they have not done the trick. I heard of someone who had a fidget ring. That might work better. In any case, in the course of a few days, I had been both wise and wound up. I wish the “real” answer to the problem came as easily as it did with the rash on my leg. But nobody promised that life after transplant would be easy.