Surprised by a Nightmare About GVHD of the Skin
Blood cancer survivors: Have you ever had a nightmare about relapsing?
It wouldn’t be surprising if you did. I have had them for sure. Nightmares and flashbacks can be a sign of PTSD, which many cancer patients have. You don’t even have to have PTSD to have these nightmares. It’s normal after a traumatic experience. And relapsing is probably a cancer survivor’s greatest fear.
But to have a nightmare about your skin? Specifically, your skin thickening? That is what happened to me.
A nightmare about GVHD
I have from time to time linked to my writing about skin cancer. But I did not have a nightmare about skin cancer, though you might think I would, what with darned squamous cell carcinomas popping up here, there, and everywhere, most recently on my scalp.
No, I had a nightmare about graft-versus-host disease (GVHD) of the skin. The American Journal of Clinical Dermatology says that GVHD of the skin “can affect between 40 and 60% of patients, depending on host and donor factors.” In my post, After Leukemia, Dealing with Skin Cancer, I wrote all about it, or, as we used to say in the news business when stories were long, I wrote all that you never wanted to know. My first symptom was a hardening of the skin in my abdomen. It felt like I had a bowling ball, or a baby, in it. The skin on my thighs also got funky, meaning, hardened with dimples in them.
Extracorporeal photopheresis
The good news is that there was a fix for it: extracorporeal photopheresis, or ECP. Some genius figured out that if you remove a certain number of white blood cells, give them a bath in UVA light, and then return them to the patient, the misbehaving cells calm down. I did it for almost three years (I actually lost track), and the symptoms reversed. My skin softened. I gradually cut back, and then... the pandemic hit.1
You are supposed to wean, not abruptly stop. But stop is what I had to do. Luckily, I did not backtrack. My skin stayed soft…except for in my dream. Or, as I started out saying, my nightmare.
In the nightmare, my stomach hardened again. Worse still, the hard part was taking over the soft part. It was creeping up towards my chest. Soon I wouldn’t even be able to breathe. By the way, this actually happened to people. Not the creeping part, but the part where their skin hardened in a way that made it difficult to breathe. So, in a way I was lucky. My condition didn’t impede my movement or hurt my quality of life. My providers seemed pleasantly surprised by the fact that I hadn’t backtracked. I woke up and was glad to realize the backtracking was only in my dream/nightmare.
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