If you’re preparing for your first proton therapy radiation appointment, stay calm and read on..
On my first day of radiation I sat in the waiting room with 4-5 other people and played a game of Guess Why They Are Here in my head. Brain cancer was the easiest to spot. They would have an area of bare red skin on their head that was hard to miss. The other cancers were trickier. As I continued to scan the room I wondered, does she have breast cancer? Is his cancer curable? She has all her hair so it's not brain radiation.. Or is that a wig? This kept me busy for a while.
Soon, a technician called my name and I followed him down a couple hallways, and past a room on the right that was full of people on computers ready to observe and administer my treatment. Finally, we came to a huge automatic door that was about 6-8 feet thick and opened into the craziest room you have ever seen, like something out of a Star Wars movie.
I won't lie - the room is intimidating and my heart was beating out of my chest. There was this massive machine with a little bed in the middle. It wasn’t a closed machine like an MRI. It was large and open, the size of an actual room. Click on the video below to watch a great video about UM’s new proton machine, and to get an idea of how it works and what to expect:
As I took the room in, I heard Keith Urban singing and I felt a little more relaxed. I looked around and taped on the wall were the pictures they had taken of me in my “comfortable” position, and on a nearby table I saw my mask, labeled with my name. The bed had all the wedges and pillows already pre-positioned in my preferred position. It's hard not to be impressed by the level of preparation involved in this treatment. They thought of everything, and I felt…as comfortable as I could under the circumstances.
The radiation technicians introduced themselves and explained that they would be my technicians every day for the next six weeks. I don't know if it is standard practice to keep patients with the same techs for the duration of their treatment, but it should be. Jessica, Johnathan and James were the reason I stayed sane throughout my six weeks of daily radiation therapy. Knowing that they would be there to greet me, set me up on the platform, crack jokes with me, and send me off every day, made getting out of the car each morning a little easier. I talk about the importance of bedside manners in another post, and these three are the gold standard.
It's tradition for the proton machine to be named after the person who built it, and mine was named Julia. She wore her name proudly on a small plaque on the front of the machine. I think having a name made her less intimidating, which made me less nervous. Plus, my grandma's name was Julia so there's that too. After a quick tour of the room, it was time to begin treatment.
I laid down on the platform and they brought my mask over and put it on my face. The tech buckled my mask to the platform and tightened the straps, anchoring my head down so I couldn't move at all. I was so nervous, and despite how hard I tried not to cry, seconds after they strapped my head down, I couldn't hold it in any longer. My eyes watered and large tears started to trickle down the side of my face. The mask stopped them midway and they just sort of pooled at my cheek. My nose stuffed up and the panic set in as I imagined myself silently suffocating on my own tears. Would any one get to me in time? Or would I just die there? (I asked this question after I finished, and my techs assured me that they would get to me in time because I was being constantly monitored by an entire team of doctors and radiation techs who could see and hear me the whole time. Phew!)
The techs gave me a blue oval cushion called a grip ring to hold onto, and to keep my arms from falling off the sides of the narrow bed. They left the room, I closed my eyes and the machine started.
I saw a lot of green light laser beams flash at me and past me. They were hard to keep track of so I closed my eyes. The machine was loud (but not as loud or annoying as an MRI) and the platform I was on moved around every so often. After the first week I was able to memorize the movements and I could tell when the treatment was almost done. It was a little game I played to distract myself when thinking good thoughts wouldn't cut it.
Just a heads up - it's really hard not to imagine every worst case scenario as you're laying there physically restrained and scared out of your mind. Try to focus on the music and think good thoughts. So cheesy, but it's really the only thing that works. The good news is, all the bad stuff that you experience during radiation is mostly psychological. I had no pain and no physical discomfort at all. In fact, I didn't start experiencing side effects from the radiation until about three weeks into treatment.
After about 35 minutes, the machine turned off and the techs walked in. They always announced themselves right away since I couldn't see them. They unstrapped me and helped me up and off the platform. I walked stone faced to the car where my husband was waiting, got in, slammed the door, and sobbed hysterically for 5 minutes. We drove off and he took me to lunch – a tradition we continued every Friday to celebrate another week of treatment done.
Tips if you're getting ready for proton therapy:
Ask for Zofran and take it 15 min before you get there. You might not need it every time but the first treatment is so overwhelming and it's all new and really scary. No need to add nausea to the mix. I didn't take anything on my first day and I spent 35 minutes queazy and scared that if I threw up, I’d suffocate and die in there. After the third week I calmed down and didn’t need the Zofran anymore.
Wear comfortable, loose clothes. If you're getting brain radiation then you'll probably be able to wear your regular clothing. It's cold and uncomfortable during the treatment so try to dress as comfortably as possible. Trust me, no one is going there looking like they just stepped off the runway. Promise.
Sneakers! I once wore sandals and they fell off. My feet were cold and I was so annoyed.