At the end of March, I went in for a simulation radiation appointment. I was a bit nervous, but more-so excited to see what radiation was all about. I feel as if it is the one part of treatment that never gets any light shed on it, and yet it is probably more time consuming than anything else! I sat in the waiting room of radiation oncology just weeks after my double mastectomy. The room was long and bright with a friendly woman sitting at the desk, a Keurig waiting to be brewed, and commercials for dietary suggestions on the television. I was waiting just a couple of minutes when a woman about my age with dark shoulder-length hair came up to me and said "Sarah?" I nodded and smiled. "You can come with me." We walked and talked down the hallway as she described what I would do each time I came in. I received a plastic card with my name, a list of phone numbers, and a barcode on it - talk about VIP treatment! Rather than checking in at the desk, I was to come in, scan my card, and head right back to the changing room...where I would be greeted with a red carpet, wine, cheese, and a massage...Plot twist! 😝 Just kidding! Instead, I was to walk back, change into my Radiant Wrap (pictured below - check them out on instagram please!), barely wait any more than 5 minutes, and my girl, Jill, would escort me to the big radiation room.
The simulation room was set up very similar to the actual room I'd be getting treatment in. The day of my simulation, I neglected to bring along my Radiant Wrap, so I changed into an oh-so flattering hospital gown and was led into a large room with what looked like a CT scan in the middle of it. I lay down on the bed, pulled the gown down to my waist, and struggled as I put my arms up in the red stirrups they put above my head - I definitely I had some more stretching to do after surgery! The techs were so nice, though, and understood all that I went through just weeks before. They tucked some washcloths under my elbows which helped tremendously since this was going to be the position I needed to be in for treatment to my chest wall. The difficult part about treatment like this is that they don't want to damage my heart or lungs! In order to avoid any issues, I needed to control my breathing through my chest and expand it as wide as possible while holding it for the duration of each treatment. To ensure that this is done correctly, they gave me VR glasses that shows a bar graph with a box at the top. There was a sensor attached to the ceiling that measured how far I was expanding my chest when I inhaled. The wider my chest grew, the further up the bar would go. My goal was to get the bar within the box. If at any point during treatment I coughed or the bar went outside of the box, the machine would shut down and we'd start again for safety reasons. It is actually a pretty neat concept! While I was getting scanned, everyone else left the room and they spoke to me through an intercom to tell me when to breathe. "Take a deep breath in and hold..." I would hold it for a few seconds, "And breathe out".
To make sure that I was lined up correctly on the machine, lasers pointed down on me and I got 8 tattoo dots where the lasers hit my skin. Once I began treatment, they also marked other areas with sharpies and stickers. I'm a real museum now, when you add all the paint and markers my kids get on me, too! 😹 After lining me up for my chest wall, they then needed to reposition me for my spine. I got up off the table and the techs took off certain equipment and put down a flat board with pegs for my hands to hold. Then, they took out this special contraption that reminded me of one of those vacuum bags you use to store a dresser worth of clothes under your bed...I know you've at least seen the infomercial! Well, we needed to be sure that I was especially still, because we don't want to radiate my spinal cord, so I sat on this vacuum bag and it conformed to the shape of my bottom and the curve of my back. Once I was situated, they scanned me to make sure everything looked straight and I was good to go!....every day...Monday thru Friday....for 6 weeks. Joy.
My first day of treatment was a couple weeks later. On my daughter's fourth birthday, April 8th, I went in for a practice round. That morning, my sister and I took our kids to a trampoline park to burn some energy, celebrate L's big day, and to get my mind off of my appointment that afternoon. My husband got home at 2:30pm, we had a quick kiss in the driveway, and I hopped in my car to make it to Uconn in time for 3:00pm! (Another reason I am so glad I live close my oncology center - I don't have to worry about childcare!) I made it there with little traffic, parked in the garage, and power-walked my way to radiation oncology on the first floor. I whipped out my fancy VIP card, scanned in like a pro, and walked down to my changing room, complete with four lockers, a bench, a mirror, but no wine OR cheese. Damn. HOWEVER, instead of donning a typical hospital gown, I brought along my generously gifted Radiant Wrap and I was the fanciest patient in there! I continue to get compliments everyday and it has been working out perfectly!
The same girls who did my simulation were there to bring me in. The room looked almost identical to the simulation room I was in just weeks before, and the props were already set up for me to climb onto. Since it was just a practice round, they took 'films' or x-rays to make sure everything looked right, threw on some stickers, changed my positioning, and scanned my spine alignment. Everything looked good and I was ready to start treatment the next day. I will receive a total of 28 treatments to my chest wall and 25 treatments to my spine. Every other day, they put a large square of thick, skin like material called a bolus on my chest. This tricks the machine to radiate my chest wall at different depths to target the treatment the right way. Most days go pretty smoothly and I can be in and out within 30 minutes or so, but other days take longer if they need to take x-rays or if they're having trouble aligning me correctly. The time goes by pretty quickly, especially when they remember to play my Shania Twain station request on Pandora! 😉
After my practice round, I met with my radiation oncologist and his nurse to go over some products to use to minimize any side effects. I had already done a ton of research on what to expect before beginning radiation, but it was nice to hear what they had to say went along with what I had read. The number one rule when undergoing radiation is to avoid using any skin products with any fragrance in them! Your body wash, soap, and lotions should all be fragrance-free! If there is any type of fragrance left on your skin, the rays will burn it right up and you do NOT want that. My skin is already turning red, so I would hate to see how much worse it would be if I did not switch to fragrance-free. It's also important to avoid any lotions 4-hours prior to treatment and to wipe off any deodorant before treatment as well. I have made the switch to using natural deodorant anyways, so the nurse said that should be okay to use since it does not contain aluminum. Aquaphor is another popular product patients use right after treatment or before bed. It tends to stain clothes, though, so I have been wearing camis under any shirts I don't want to ruin. Another product that has been recommended to me that I like to use at night is called Skin Soother from Etsy (check out my Products page). It is all natural and works really well to improve any redness.
I am officially at the halfway point of my radiation treatment.
14 treatments done.
14 days of driving back and forth to the hospital.
14 days of rubbing lotion, Aquaphor, and Skin Soother on my body.
14 days of baring my scarred chest to strangers.
14 days of interrupting my family's afternoon.
14 days of giving this cancer a sucker punch to the fucking face with hopes of never having to deal with it again!
I am so very close to being done with the active part of my treatment. Although this will be a HUGE milestone, it is still very bittersweet for me because I know I am still in it for the long haul. After radiation is over, I will continue to receive infusion every 3 weeks, zoladex/xgeva shots every 4 weeks, follow-up with my oncologist every 3 months, and get PET scans every 6 months. Back in October, I had a hard time envisioning what my life would look like at this point, but overall I am pretty damn happy.
