A Pain in the Neck

A year ago yesterday, I found out I had Hodgkin’s lymphoma. That day, if you would have told me I’d be putting duct tape all over my head a year later, I may not have believed you.

This past year has seen me do a lot of things I didn’t think I would or could do. I’ve been through six months of chemo. I’ve given myself blood thinner injections. Until this past month, I’d never been in the hospital overnight. I have nine radiation tattoos. I’ve shaved my head three times.

That last part brings me to the duct tape. On Saturday and Sunday, I noticed all my hair was falling out at once. I could just reach up and give it a slight pull, and it would easily come out.

I was thinking of just pulling it all out, and I started to do so Sunday morning, but got bored, so we decided to shave the rest off. I’m not sure who reads this, but if all your hair starts falling out after augmented ICE, just pull it out, no matter how long it takes. When I shaved it, I had stubble left. But it hurt. When I put my head on a pillow or touched my head, it felt like tiny needles in my scalp. The places where I’d pulled it out felt nice and smooth.

On Monday, I was desperate. I asked my boyfriend if we had duct tape. At first, he said we didn’t and he added that he thought pulling out my remaining hair with duct tape was a bad idea. He argued that you didn’t know what was on the sticky part of the tape. But since I’m regularly being injected with chemicals that kill all my rapidly-growing cells (including my hair and those is my stomach lining—and hopefully the cancer), the toxicity of duct tape is the least of my worries.

“We do have duct tape, but you’re not using it on your head,” he finally admitted. Killjoy.

I spent lots of time putting masking tape on my head.

I tried packing tape, but that pulled out only part of my hair. And then masking tape, which worked a little better. If you’ve ever wondered what it’s like to apply masking tape to your whole head and pull it off, it’s as tedious as it sounds. I would never try it, obviously, when your hair wants to be attached to your head. But I just needed to get these remaining hairs. I was obsessed.

After another night of prickly sleep, I begged my boyfriend to look for the duct tape. He really couldn’t find it this time. (Or so he claims.) And then he “forgot” to pick up some at the store. I applied more masking tape to my scalp.

Then, yesterday, I noticed a painful bump on my arm, near where one of the chemo IVs had been. I recognized this as signs of a superficial blood clot, which I’d had on my other arm during the ABVD chemo. I called the doctor and had to go in for an ultrasound and rescheduled a work conference call.

The results were two superficial clots — not serious (but painful) clots in my right arm. Since I am having a leukapheresis catheter put in on Friday, I can’t take blood thinners. (On a good note, this stays in for the remainder of treatment and my arm veins get a nice break. Overall, though, I’m really grossed out by having tubes sticking out of my chest for a few months.)

The doctors told me to apply warm compresses to my arms. I forgot to pick some up, so I’ve been thinking about applying the cats after they’re done sunning themselves or after the big white cat is done absorbing the heat from the space heater.

What I did pick up on my way to the ultrasound, however, was duct tape. (And a Snickers egg. Snickers are my favorite candy bar, but they lose something in egg form. I think the carmel, nougat, nut and chocolate ratio is compromised.)

Free at last!

Upon returning home, I triumphantly applied duct tape to my head (and ate half of my Snickers egg). And — just as I thought — it removed my hair. I am free of stubble and smooth-domed. I’m pretty sure my hair won’t grow back until May or June, so this will be my look for awhile. And, unlike last time, nothing is left of my hair.

During this time of baldness, I’m always kind of at a loss of what to do in the shower. The majority of the time is spent washing my hair and shaving. I could take up singing my bald theme song, but I don’t have a very good voice. I’ll probably just exfoliate.

Despite his reluctance to assist me in applying duct tape to my head, my boyfriend assures me that I’m not funny looking. But I had been reluctant to wear one of my usual sleep T-shirts, and I couldn’t pinpoint why. It has the logo of Cleveland goth band Lestat, with a depiction of Nosferatu. I inherited this T-shirt in high school from a friend’s older sister. Today, when I looked in the mirror while brushing my teeth, I realized that there were two bald people with prominent ears displayed in the reflection. After I emerged from the bathroom, my boyfriend looked at my shirt and then at me and said, “Hey, you kind of look like…”

That guy on my T-shirt looks familiar…

“I know,” I said. I’d hoped if I ever looked like a vampire, it would be one of those sexy, preternaturally good-looking Anne Rice characters. I suppose this is what I get for those years of being goth, emulating that vampire look: Nosferatu. Be careful — or very specific — about what you wish for.

Speaking of vampires and blood, my blood pressure’s been very low. I’m not sure why. If I had to venture a non-medical guess, I’d say it’s because I’ve been pretty calm and haven’t been in public much. My blood pressure’s usually a little on the low side, but I wonder if my Frank Costanza-like short fuse raises my blood pressure and keeps it normal. (Serenity now!) I’m not sure what I should to do raise it, other than stew about topics that upset me, like flip flops on the train, Doritos Tacos Locos or that new Kevin Costner movie that looks so bad it makes me angry that Hollywood continually expects us to watch some of the terrible films they keep making.

Aww…

In the meantime, I haven’t gotten around to applying a cat to my arm. But this evening, my arm clots really hurt. As I whimpered and cried as I tried to extend my arm, one of the cats came over and put her paw over my hand and licked my knuckles. (Aw.)

To his credit, the other cat is not without his own sweet gestures. A few weeks ago, I felt a little overwhelmed by everything and just put my head down, face-first on the bed. I was about to cry when I felt a sandpaper tongue on my head and a paw patting my head. I suppose it’s possible I had crumbs in my then-short hair, but I’d like to think he was comforting me. He may never understand how to get treats out of his toys and he may lack feline grace and fall off the couch a lot, but he’s a sweet cat.

Obviously, this is not where I’d like to be a year from my initial diagnosis. I wish the six months of ABVD had cleared up the cancer. I’d rather not have refractory Hodgkin’s lymphoma, The hardest part of treatment still lies ahead, in these coming months. Yet absolute ridiculousness of covering my head with duct tape and looking like Nosferatu is at least keeping me from taking myself too seriously on what could have been a very sad anniversary.