A rash of good

My side effect nemesis bursts onto the scene (October 11, 2018)

What I wrote on October 11, 2018:

“A rash is good, because it means the medicine is working.”

It’s what I told the twins when they worried about me looking different if I got a chemo rash. And it’s what I'm telling myself now.

Thankfully (?) it looks better than it feels. Yesterday people were telling me I look great (hopefully they didn’t mean “great for someone with cancer!”). I think most didn’t really notice the rash. But it’s tight, hot, and incredibly itchy. Steroid cream and Benadryl can only do so much, so reminding myself, it’s working, is what's keeping me sane.

P.S. I did NOT wear this mask on the plane, in spite of Per ordering and paying for rush shipping. My doctor confirmed my immune system is still in good shape and told me just to wash my hands every chance I get!

Looking back today:

First, I bet that the picture of me with a mask on in an airplane didn’t catch you by surprise, did it? Even with the worst of Covid behind us, I’m still wearing a mask on the plane when I travel—and I’m not the only one. When Covid first hits, we will be grateful for the 20-pack of masks that Per purchased for this flight, most of which are still left in the original bag.

Back then, I’m so embarrassed by the idea of wearing a mask in public that I add a specific P.S. to make sure that nobody who sees this picture would get the impression that I actually WORE it.

But there is a reason I’m wearing a mask in this picture, and it is, as they say, written all over my face. Those three little bumps that appeared on the perimeter of my face just four days prior have exploded into a constellation. If you look closely at this pic, you’ll see clusters of bumps around my eyebrow and eyelid—and over the course of the weekend, during which we will attend our friends Nik and Soa’s wedding, the rash will get worse and worse.

Nothing helps enough. I am continuously aware of the rash: my face feels tight and unbearably itchy, like the worst sunburn you’ve ever experienced. Each time I unconsciously lift my hand to ensure it hasn’t turned into the open wound it feels like it must have become, my fingers encounter the unfamiliar terrain of my skin, and I want to cry.

It’s painful, and ugly, and embarrassing—and I cannot escape its reality.

It is exhausting.

I ask Per to take me to Nordstrom where I buy an expensive Eric Javits hat to shield my face while we are in LA, as I know the sun will make it worse. I am too miserable to feel guilty about how much I spent. I hide under its wide brim and big sunglasses, and more foundation than I normally wear. Per assures me that I look fine, and so do the other guests we meet back at the hotel who are also in town for the wedding.

I don’t believe any of them, and I’m not sure it would matter if I did, because the real torture is the way it feels. One of the local guests who’s heard about the rash was thoughtful enough to swing by with what we now realize was several hundred dollars of medicinal marijuana.

I think back to the first oncologist who told us about Vectibix.

“Fuck you,” I think to myself. “Seriously, FUCK YOU.”

Because he made it sound so easy—“If you get a rash, we’ll treat it.”—and already I know all the way to my bones, all the way to my soul, that there is no easy treatment for this motherfucker.

I excuse myself back to the room, where a gel-filled eye mask is waiting in the freezer section of our hotel fridge. I eat half of my very first marijuana gummy, then lay down, placing the gel mask over my eyes. As the numbing and the gummy kick in, I finally feel some relief and fall asleep.

I may not have slept had I realized that this rash was only getting started.

Over the following 36 rounds of chemo, various side effects would come and go; but the rash would remain my number one nemesis.