Background:
In May I had what I thought was a canker sore on the left side of my tongue. In August it got deeper and more painful, so I went to the doctor. It was surgically removed via partial glossectomy, but required a second glossectomy and neck dissection. I wished I had shared my healing process for the surgery, so I'm trying to do so with my radiation treatments. It's hard to find info on what to expect, so here's my experience.Mask Making:
This appointment was around 2 hours long.
Since my radiation will cover my oral cavity and neck I was asked to take my shirt off and put a gown on. I was able to leave my pants and shoes on.
I was taken into a room with a CT scanner and asked to sit down on the table. My radiation nurse explained what would happen and my doctor came in to check my tongue and try to figure out how to hold my tongue in position for the radiation treatments.
We settled on a purpose-made plastic tongue depressor thing with a lot of wax molded around it until it pretty much filled my mouth and didn't allow me to move my tongue. I am not prone to anxiety over small spaces or breathing, so this was fine, but I could certainly see how this could cause some panic. The nurse offered some solutions that I didn't need and said this is an issue for some people, so they know to expect it. It just wasn't much of an issue for me.
Next they had me lay down on the table with my head on a moldable pillow thing. They then seemed to press something up against my head and shoulders. It felt like I was laying on the beach and they were piling sand around me. I was lined up with some lasers, dots were drawn on my face with Sharpie (they were easily removed with alcohol later), and then came time for the mold.
They showed me a mold before I started, so I knew what to expect. They put the tongue holder in place, then took a flat plastic net-looking thing in a frame and put it in warm water. It smells like medical chemicals. When it's ready they ask you to close your eyes and they push it over your face and lock the frame to the table. They said they "laid it over" and that it "felt like a warm barber's towel". There's a bit more pressure than that. Not horrible, but less relaxing than they insinuated. You have to be still for 5 minutes while it stiffens and dries. I decided to imagine I was being prepped for a space flight. The weird noises around me added to my fantasies.
The net is fairly open so I had no issues breathing. It was just wet and a little sticky feeling. My heart rate was up a little -it was a little stressful and weird, but not panic inducing or anything. During the drying process they were labeling things with markers and stickers on the mask, so I was never alone or bored enough to dwell on it too much.
When it was cured they unlocked the frame from the table and lifted it off. I was free to get dressed again and my first real radiation appointment was booked for a week later.
I did ask my radiation nurse if music was allowed during the treatment since I'd be in that thing for 20 minutes and I knew I'd need a distraction. She said I could play something on my phone in the room. They had some other ways to play music, but they often had technical issues. Good to know!
#2 Sessions 1 and 2
I had session 1 yesterday and session 2 today. The first treatment took a little while to fit the mask, line it up with the machine (I assume, I don't know because I was strapped down by the mask to the table and unable to even open my eyes). They communicated what to expect physically and timing-wise -the doctor had to check everything before going ahead with treatment. When everything was ok they started treatment. The entire thing took about 20 minutes and I was told after that the next one would be shorter. I felt nothing during treatment. There's an annoying long beep while the radiation is on. The radiation has 3 parts for my treatment with short pauses while it sounds like the machine is moving in-between.
I had no pain or taste changes after treatment #1.
Treatment #2 happened today. It was quicker to start and took probably 10-15 minutes. I didn't feel anything during treatment, but I do have some pinpoint pain near the area where my tumor was removed from about 30min after treatment and pretty steady until now about 9.5 hours later. The pain is minor and easily forgotten about if I'm busy. It's just an annoyance.
Nutrition
I had a little info session with an RN before my first treatment and she emphasized my protein intake and taking Calcium and Vitamin D supplements. She said not to take other vitamins without the doctor's approval as antioxidants can sometimes decrease the effectiveness of treatment. I concentrated on getting my protein intake up today (treatment #2 day) and got 95 grams in (65mg minimum recommended). And took a Calcium and a Vitamin D supplement before dinner. They are the lowest mg supplements I could find so I could take them twice a day and spread out absorption.
1/22/2020: 1858 calories in, 1846 calores out, 63g protein
1/23/2020: 1884 calories in, 1814 calories out, 94g protein
