October 19, 2011
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Aboard the Starship Enterprise
Posted by Stephanie 11:00am CST from the apartment Houston, TX
More than halfway done. Yippee. Proton therapy has been quite the adventure, and so far, a very positive one. I’d love to share my experience, especially since so few of you have any information about it.
I was nervous going in to my first proton therapy treatment. Not because I was worried about feeling bad, or having any problems, but just because I really didn’t know what to expect. I had done a good bit of research about it prior to that first session, but reading about it and actually being in the room to experience it are two very different things.
The teams (I’ve had two separate teams, depending on the time of day) of radiation therapists who work with me daily are amazing people. The first night I was there, both of the therapists made me feel so comfortable and talked me through everything that was happening. I was first taken to the changing room to disrobe from the waist up and don a gown (fashion statement of the century, right there), and then given a quick tour of the control room. The therapists are with me in the treatment room almost all the time, but retreat to the control room while the actual radiation is taking place. They have monitors there that allow them to see and hear me while keeping an eye on the computerized program that the machine cycles through (designed specifically for each patient).
I was then taken next door to the treatment room. Along one wall, there were metal shelves, one for every patient, that held the molds and machine blocks needed for treatment. Computers lined a section of another wall, and then in the back of the room was the proton machine itself. It’s hard to even describe. There’s a metal table for me to lay on, a wide “belt” that wraps top to bottom around the treatment area, and the actual proton ray/machine, which rotates on that belt to be positioned in just the right spot. Here’s a picture to help you better understand how it looks:
I lay down on the table and positioned my head and arms into the mold that was made for me after the simulation session. Then one of the therapists spent another minute adjusting my hips and legs on the table so that I’d be in exactly the right spot. The table was raised, and a moment later sections of the wall behind me pushed forward, coming to rest above me and on my left side. I was told these were actually x-ray machines, and that I’d have x-rays taken every day to ensure that my placement on the table was correct. Seeing a theme yet? Placement is super important, since the proton ray is designed to target the affected area down to the millimeter. Anyway, quick work was made of the x-rays, and those machines retracted back into the wall. One of the therapists then started to load my “blocks” into the proton machine. Anywhere from one to three thick gold plates (called apertures) with different shapes cut out in the center (to help shape the proton ray) were loaded in, then a thick, clear, acrylic block (reminds me of an icy igloo block) with a 3-D ‘honeycomb’ looking pattern in the middle of it (called a compensator) was placed in front. Each patient has their own personalized set of blocks, since the shape and location of each person’s tumor/treatment area is so different. I actually have two sets of apertures and compensators, because I receive two separate doses each treatment session.
Once the machine was loaded and the labels on the blocks scanned into the computer, the belt started to turn, taking the machine to the right and underneath the table. Turns out the team of scientists designing my treatment felt like they could get to the targeted area best, and do the least damage to surrounding structures if the ray entered through my back. One of the therapists warned that I might get disoriented as that belt turned, and that it would feel like the room (and me on the table) was moving, but not to worry, I was safely staying put. Sure enough, it felt exactly like that. Quite alarming the first time it happened (I could’ve shut my eyes, but where’s the fun in that?), but now I actually enjoy the craziness of that sensation. As soon as the ray was in place, a chime starting sounding in the room, and I learned that was the therapists’ cue to exit to the control room. I was told this first part of treatment would take only two minutes, and that I wouldn’t feel, see, or hear anything. So, there I lay, alone in the room (with only some Michael Jackson playing to keep me company), trying to be as still as possible and breathe normally while awaiting this first session. Aside from hearing a quiet hum from the machine when it started up, nothing else happened, and two minutes later the therapists were back in the room, typing on computers and rechecking my placement while the machine retracted and spun back around to it’s starting position. They unloaded that set of blocks, replacing it with the next set (including a differently shaped ‘honeycomb’ dome block since it’s coming at a different angle), and the belt spun the machine overtop of me and around to the left side this time, stopping again underneath the table. They left the room again, and after another short, two minute treatment, it was done. The machine returned to it’s starting position, they lowered the table and helped me sit up, and then I headed back to the changing room before returning to the lobby to meet up with Ang.
Because of the initial tour and extensive explanation from the therapists, that first session took just over a half hour. The second day took almost as long as I got used to the routine, but since then, my treatment session average between 15-20 minutes start to finish. So nice! Most of my ‘zap sessions’, as I fondly call them, are scheduled early in the morning, so sometimes I’m barely awake when I get there, but between the upbeat music they blast in the room and the friendly chatting my therapists do, I’m wide awake by the time I leave. During those few minutes I have on the table by myself, I’m either A) silently praying that the proton beam is going exactly where it needs to go to destroy any cancer that’s left in that spot, or B) I’m doing what Ang and I have dubbed the “Radiation Mental Chant”, or the RMC. Those of you who have followed this blog for awhile know that back when I did all that high-dose inpatient chemo, we had a “Happy Chemo Dance”, which we did to encourage the chemo to work as it entered my body. Since I obviously can’t dance while lying on the table, we’ve had to make adjustments and do our encouragement internally, hence the development of the RMC. It’s a very simple mantra: “Go, protons, go!” Over, and over, I’m willing it to work!!
So that’s a first-hand account of proton therapy. Of course, people who are having other parts of their body treated (brain, spine, abdomen), have a completely different experience with it. With all the insanely advanced technology, moving machinery and space-age room layout, I feel like I’m guest-starring on an episode of Star Trek. It’s about as fun as cancer treatment can get, though I do have moments tinged with sadness when I see a child being wheeled around back near the three treatment rooms. Proton therapy is extremely popular for a couple types of pediatric cancer, so seeing tiny little bald kids around there is a fairly common occurrence. In the main hospital, they keep the children totally separate, but here, not so much. It hurts my heart to see someone so young going through this, but they are always in great spirits. Very brave.
Angela was with me for the first week and a half of proton therapy, then Sammy came down for a few days. After he left, mom took his place, and she’ll be here until the middle of next week, when Ang will return from her duties as maid of honor in a friend’s wedding to finish out our time here. Aside from my treatments every day, there’s not much going on. I have a brief weekly appointment with my radiation oncologist, Dr. Chang, every Thursday so that he can monitor my progress. That leaves a LOT of time on my hands (especially since the weekends are treatment free), and sometimes it’s tough to fill the hours. We’re walking two miles a day (one in the morning, one in the evening), and making the occasional run to the grocery store, but I spend a lot of time reading and playing on the computer. It’s probably a good thing, though, that I’m not insanely busy, since I’ve recently started to experience some of the expected side effects. They showed up at the end of last week, exactly at the halfway point of my treatment. Mild fatigue (hooray naps!), some discomfort when I swallow (about 30% of my esophagus is affected during the radiation), and the start of the ‘sunburn’ marks on my back where the proton ray enters my body. So far, not bad at all. I’m hoping they stay mild and I get through to the end of treatment feeling good.
Oh, one last exciting thing. I was called a couple of weeks ago by the marketing director at the Proton Therapy Center, who often does stories on patients, which are then published to their newsletter and website. She was contacted by Veronica, Dr. Chang’s PA, who thought my journey was worthy of such a story, so I have an interview tomorrow with the marketing team to share my six-year saga. I’m gonna be famous! Super cool.
I guess that’s about it for now. I’ll try not to wait so long before posting again.
-Steph
P.S.–If you’d like to learn more about proton therapy, check out MD Anderson’s page at http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/index.html
