When I saw my radiation oncologist today and told her that my back still hurts, even after $60,000 of cyberknife treatments, she gave me a pitiful look. It was a look that I recognized well. I received that same look from my oncologist during an appointment with her a few days earlier when she told me that she was disappointed that cyberknife didn't seem to be resolving the bone pain in my seventh thoracic vertebrae (go, T7!) that I've had for almost a year.
"It's only been a month, though..." My voice trailed off.
So many medical professionals have given me 'the look:'
- an anesthesiologist squeezing my shoulder and wheeling me back to my first lumpectomy,
- a lung specialist explaining that I would not be asleep during a broncoscopy (and then a nurse squeezing my hand during the procedure),
- a lung specialist delivering the news that the spots on my lungs in the scans we were reviewing were most likely cancer. Surprise! Two oncologists, a breast surgeon, and a thoracic surgeon had already told me this same news.
"How would I know?" she said. "I've never had a lung biopsied before."
Really, I thought. Just shocking! You seem so empathetic and understanding about it. I'm amazed that you don't have any first hand experience in this department.
No, the pity look is not "blue steel" but it's almost as good. And yes, I know that I just included a bulleted list of pity looks. I'm a nerd.
Apparently, when you have cancer, you get to receive the 'pity look' from multiple cancer specialists. You also get to hear the same diagnosis over and over again from more than one person. This is because there's a medical professional for, like, every part of your body, and every type of treatment prescribed. You get the whole package - a breast surgeon to operate on the breast, a thoracic surgeon to biopsy lung tissue, a lung specialist to stick a broncoscope through up your nose and through your lungs, an oncologist to prescribe chemo and hormone therapy, an oncology nurse to pump medicine through your veins, and a radiation oncologist to zap diseased bones. A neursurgeon to tell you, "Gee, you're awfully young to have breast cancer. You must have a family history." A phelbotomist in the genetic testing unit to tell you how "lucky" you are to have caught your cancer while you were still "young," unlike his ex-wife who had to have her breast "cut off" - his words, not mine.
Yep. You get to meet all sorts of interesting people.
About a month ago, my lovely T7 vertebrae, which looks like a hot mess of a moth eaten bone on the MRI images and feels just as lovely, was "zapped" with cyberknife radiation. During treatment, I listened to Nora Jones, Jack Johnson, and a third CD I can't remember while I tried to hold very still on a hard, flat table as a space-age looking machine whirled above my head. I refused to look at the machine at first. Worried that looking at it would freak me out, I squeezed my eyes closed like a child watching but not watching a horror movie, peaking out every few minutes from scrunched up eyes.
When my radiation oncologist's receptionist told me that I could bring a CD to listen to during treatment, I considered bringing Dane Cook's "Retaliation" or "Harmful if Swallowed," both of which include jokes funny enough to make anyone with a sense of humor accidentally wet themselves. I used to listen to Dane Cook jokes on my ipod while riding the metro to work in an effort to contain my anger at middle-aged men in suits who ignored pregant ladies and elderly people, wobbling overhead, hoping that someone would be gracious enough to offer them a seat. Dane Cook is so funny that when I listened to him on the metro, I laughed to myself, while the middle-aged, pregnant and elderly alike looked at me like I was a crazy lunatic. So, I decided that Dane Cook might be the cause of my ultimate demise on the radiation table and tried to find a CD from my small collection that would be more suitable for lying still for over an hour.
Part of my decision to have cyberknife radiation in the first place was that I thought it sounded very technical and important. The intent was to zap the pain away. "Cyber" anything sounds kind of neat, right? It reminds me of a fictional treatment from a show like Star Wars or Stark Trek or something with "star" in the title. Everything I read about cybernkife said that it was very effective with minimal side effects, which sounded too good to be true. Cyerknife is no Urban Outfitters; it's the Anthropologie of cancer treament, or, more like the Gucci or Prada.
I haven't purchased a CD since I got an ipod several years ago. My most recent CD, Nora Jones' "Come Away with Me," was released in 2002, the year I graduated from U of M. I walked down the isle at my wedding to that song. It was a grassy lawn of an isle, but it was still an isle.
On Day 1 of cybernkife, as the radiation techinician asked me if I was ready to start, I began to think I'd chosen the wrong CD.
The radiation oncology department is not very feng shui. It's located in the basement on the lower level of the hospital, without any natural sunlight. It's pretty dreary, although it's well-stocked with plenty of wrinkled copies of frivolous women's magazines from last season. There's nothing like reading about sweaters and boots when it's 90 degrees and sunny outside. The actual cyberknife treatment room is located upstairs, but only scores about a point or two more on the cheerfulness scale.
To open the door guarding the entrance to the "Wound Healing and Cyberknife Department" (weird combo, I know), you have to push a button mounted on the wall. Then, the doors slowly open in the way that a child might imagine the entrance to a spaceship opening. Hanging on the walls are life-sized photographs of exotic creatures right out of the pages of National Geographic magazine. The waiting room walls are lined with photos of various species of birds, from penguins to peacocks. The radiation technician that gave me a tour on Day 1 told me that the restroom was across from "Turtle Boulevard," named after the photograph of a turtle hanging closeby. Ha, ha. He was a joker. His jokes were almost as bad as mine, but probably twice as funny.
The tech asked me if I had any metal in my undergarments (Um, no?) and told me that I didn't need to change from my pencil skirt into the sweatpants they told me to bring. He showed me the computer screens they would use to monitor my treatment. He explained that the techs would sit in a little foyer just outside the treatment room, on the other side of a very heavy metal door meant to protect the techs. They wouldn't want to "catch" cancer from all that radiation, after all! They'd be able to hear and see my every move via a closed circuit television system. The wall of computer monitoring screens reminded me of the casino monitors from Vegas movies like "Ocean's Eleven."
If I had to use the restroom, had to itch my nose, or had to cough, I was supposed to warn the techs that I might need to move in about 5 minutes. If I had an "emergency," I could tell them to stop the radiation immediately. What type of emergency I might have, I wasn't sure. The tech said that I wouldn't be able to feel the treatment, so it wasn't going to hurt. I suppose it could have made me puke, or something, in which case, I wasn't quite sure that I would be able to muster up an explanation in time.
Imagine me saying, "Um, stop the radiation, pretty please, so that I may throw up my lunch all over your nice, expensive machine in approximately 4.79 mintues. Let's count down. 5, 4, 3, 2, 1! And here's the vomitting blast off. Thank you."
One of Dane Cook's jokes goes like this, "I don't like a girl who exagerates. I can't listen to your stories when you exagerate because I listen; I hear you. When I listen to your story, I listen to the exageration. You would be very sick if you took a hundred hour nap. Just say that you took a coma and I could follow you."
Ha, ha, Dane. You're so funny! Stop making me laugh so hard. You're going to make me slice my spinal cord, or at the very least, wet myself, and nobody wants that, least of all the radiation tech. He would have to clean up after me.
You know, it's harder to lie perfectly still for an hour than you might think. That's why yogis practice savasana for years to get it right. After the tech closed the door to the treatment room, my knees propped up on a triangular pillow and a light blanket tucket around my barefeet (I had kicked off my flip-flops), I didn't feel very successful at holding still. My heart seemed to pound too quickly, I was panting like a thirsty dog, and felt like I was swallowing every two seconds. Of course, I don't think the techs could see any of that from their monitors, but it felt like they could.
"Whatever you do, don't move your head!" the tech told me during my tour. "It's connected to your spine, you know. If your head moves, so does your spine."
Maybe he was trying to be funny, but while I lay on the table, I kept picturing myself coughing or letting my head roll slightly to one side over the course of an hour. The radiation beam would slice through my spinal cord and cause me to become paralyzed. Not really. I don't think that can happen, but sometimes the mind exagerates.
As I listened to Nora Jones' song, "Come Away with Me," my heart thumping along, I worried that the song would no longer remind me of my wedding day. Instead, I would think about how I had once been on a table, in a cold, dark room with a light installation of cherry blossoms on the ceiling, like those posters they have at the dentist's office, with a cyber-age robot arm whirring above. Music and scents have a weird way of sticking in my memory and I didn't want Nora Jones to get stuck in the cyber world in the bowels of the hospital and not be able to leave.
When I was 8 years old, my mom took me to the mall to get my ears pierced. I wanted to get both ears pierced at the same time because I was afraid that if they pierced one ear and it hurt, I wouldn't let them pierce the second ear. So, two ladies working at the jewelry store agreed to pierce my ears at the same time. First, they disinfected my ears with rubbing alcohol. The smell made me feel like I was going to pass out and the drama started. I guess I was kind of a weird kid to know that the scent of rubbing alchohol meant impending pain and to know myself well enough to know that I would refuse the second, gaudy gold heart earing if the first piercing was awful, but I recovered quickly, got my piercings, and afterwards, we had pizza at Pizza Hut. Even though I left the store, giddy with my throbbing pierced ears, the smell of rubbing alcohol still makes me light headed to this day. The taste of heparin, which my infusion nurse gives at every medi-port flush and infusion has the same affect.
The strange thing is, that a month after radiation, I can't even remember the name of the CD that I listened to on the third day of radiation treatment, when I fell into synk with the routine. I had a new radiation tech on Day 2 who looked like President Obama and spoke in a moderated tone like him, too. He didn't tell me any awful jokes and when the doors to the radiation room opened at the end of treatment, he apologized for allowing my CD to skip and for playing it much too loudly. Apparently, the elderly gentleman who received radiation before me had requested that his biblical CDs be played really loudly and the tech had forgotten to turn the speaker volume down. I gave the tech 'a look,' not of pity, but that said, "I wouldn't listed to the Bible during radiation." He smiled and lowered the radiation table. He said he liked my short haircut and didn't seem to care when I explained that it was my "post-chemo" hairdo.
"You have really nice highlights. I noticed them while you were getting treatment," somehow, he managed to say, without sounding creepy.
Day 3 of cyberknife. I didn't know if the treatment would help my T7 pain or not. The tech didn't know much about me, except what my radiation oncologist had included in the manila colored file that I had seen on the tech's desk.
I was the girl who brought in her own CDs, lied perfectly still on a radiation table for over an hour, and didn't complain even though my radiation tech blasted my CD like I was jamming.
I walked away from the cybernkife room and as I continued down the hall, passing the waiting room filled with photographs of birds, I realized that I had forgotten my CD, but I didn't turn around to get it. The tech came running down the hallway after me.
"You forgot your CD," he said, and handed it over.
"Thanks," I said, and put it in my backpack.
That night, I walked past the taxi stand at the hospital, past the bus stop, and through Georgetown until I almost reached Key Bridge. I stopped for frozen yogurt with berries and chocolate chips on top. It was tart, sweet ice-cream and I ate it while I walked all the way home.
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