Totally Rad…iated

Actually, I think the correct word is irradiated in this case but whatever. I officially started radiation therapy last week! I’ll be driving (or riding) about an hour each way Monday through Friday until November 19th to have a linear accelerator shoot me with a super high dose of photons. It looks as sci-fi as it sounds. In fact, despite almost a decade working in critical care as a nurse, I’ve never been more amazed at our medical knowledge and technology than through this cancer process. I mean, they took out half my tongue and rebuilt it with my forearm…and avoided major vessel or nerve damage in my neck while doing so.

Anyway, back to radiation. A few people have asked me about the experience so I’ll try to describe it as best as possible. My specific type of therapy is called VMAT which stands for Volumetric-Modulated Arc Therapy. Basically a linear accelerator rotates a beam of radiation around my head and neck for about 3 minutes. There’s no pain or any sensation really other than hearing the machine. Sounds easy peasy right?

The Mask. Not as fun as the movie.

In order for the beam to hit just the intended targets and spare my healthy tissue as much as possible, I have to wear this mask each time I go in (it has marks for the team to see where we want the beam to hit). It was molded specifically to my face a few weeks ago and actually clips to the table so I can’t move AT ALL. I don’t even have room to open my eyes if I want. Also, the thing in the middle sticking out of my mouth is what I refer to as a popsicle when I use them on my intubated patients in critical care. It’s a firm wedge that I stick in my mouth to hold my tongue in place and away from the roof of my mouth. So I can’t talk, either. Oh, and that 3 minute treatment time is just the time the actual radiation is on. About 10-15 minutes before that I’m still in the mask getting repositioned a few centimeters by the radiation techs pulling a sheet under my body. Each time we take an X-ray to see if I’m lined up just right. Again, the measurements are very precise to avoid damaging healthy tissue as much as possible. Also, once a week I have a CT scan to check everything out right before the beam comes on.

Unfortunately, the worst part of this therapy is the side effects which are cumulative. There’s no way to tell how bad they’ll be and each person responds differently, but universally we experience loss of saliva, loss of taste, painful mouth/tongue/throat sores, hair loss (where the beam hits), fatigue, and skin burns. I’ve also been “lucky” enough to experience some nausea and early swelling causing ear pain in my treatment thus far. Because the effects are cumulative, I know it will only get worse from here. However, most will start to improve once treatment ends with the exception of dry mouth. Other problems can crop up later, such as stiff muscles, esophageal strictures, bone loss/death, lymphedema, dental issues, and thyroid deficiency (in fact I’ll have to get my thyroid levels checked every few months now and visit the dentist 4 times a year).

Most of the side effects ARE manageable with daily treatments like mouth rinses, medications, stretching, etc. but it’s no easy task, and manageable certainly doesn’t equal pleasant. My anxiety is at an all time high and my productivity is at an all time low partly due to feeling drained (it’s hard work for the body to repair from radiation) and partly due to just being over this whole situation.

If you know someone going through this process, please cut them some slack. They’re likely feeling many emotions but trying to be as “normal” as possible. I believe most people, like me, greatly enjoy food, so to lose the ability to taste or swallow it is pretty devastating. On top of that, they’re tired and in pain and have to make a trip however far EVERY DAY to have this procedure even though they know it makes them feel awful. So be kind. Offer a smoothie or milkshake or a ride to the treatment center. And just listen if they want to vent. Trust me, they’ll appreciate it.

Published by Stef G.

30-something former Critical Care RN, divorced single mom, tongue cancer survivor and empath who is constantly striving to be better than she was yesterday.

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