Radiation: Days 1 & 2

I survived!

But it’s been a long couple of days.

I miss my kids. My dogs…sleeping in this apartment has been ok. I have not been sleeping well. I think I’ve managed six hours of sleep in the last two days. I’m guessing it’s stress related.

Radiation didn’t start until 3 on Monday, so I spent the day being nervous AF.

I had an 8 am appointment that morning with a cardiologist. Mayo now offers certain benefits to cancer patients – so I was able to get an appointment with someone who can give me a workout regiment based on my history. That went great. I felt more justified doing what I did during chemo, and I hope to keep that up during radiation treatment (water, movement, rest).

Then I worked until it was time to go to radiation. The thing about Mayo is that you have to add extra time on to your appointment. So my treatment started at 3:00 p.m., but I had to spend time parking. Then walking from one building to the next (you can’t just walk into the Jacobson building, it closed down at the beginning of COVID and hasn’t reopened). Even the radiation nurses tell you to make sure you leave time to park and walk.

I was so afraid that I’d feel pain during the session, but that’s not really an issue.

There are only four proton radiation rooms at Mayo. Only one room can use the protons at a time, which is why you spend most of your sessions waiting.

These rooms are crazy. You walk into the first part, which is where the technicians hang out during the procedure. Then you walk down some curvy hallways into a back room where there’s a surgery-type table under what looks like an x-ray machine operating on a tank-like track, but only half of that. So it slides on this track so it’s right above you, and then to the side so it’s directly aimed at my underarm.

During the planning session, they give you tattoos to line you up in the machine. The place where my arms hang out overhead is also measured. And then I’m fitted with this open face guard that keeps my head out of the proton beam.

Once you’re all strapped in, the techs take x-rays of you first to make sure nothing is in the way of the proton beam.

The techs also ask you your music preference. I chose pop the first day (they didn’t have alternative!), and I ended up listening to some terrible early 2000s hits, including “My Heart Will Go On.” The techs said that next time, I should bring my phone. (Which I did for the second, more on that in a bit.)

There isn’t much noise so the music comes through loud and clear. The only sounds you hear are the machine when it moves and the magnets preparing the proton beam (it sounds like a heater warming up).

The whole thing only took 20 minutes for the first session. The techs told me that this is NOT typical. Usually, you don’t “get the beam” right away like that.

I did notice that my skin tightened after the treatment. I brought radiation lotion with me and applied it directly after treatment. I am also doing the physical therapy (PT) that my doc recommended during the surgery-to-radiation time-frame. That should help those skin-tightening feelings.

After radiation and after picking up some supplies, I stopped at a local restaurant for dinner. I met several folks who engaged me in conversation, and it was nice to talk to someone IRL. I conversed with a guy who’s been in the wine distribution for decades. If you didn’t know, I worked for liquor stores during and after college. I have an affinity for wine. It was nice to have a distraction. It made me feel lonely and included at the same time.

I got to video chat with the kids before their bedtime. I even read them a story! Evenly made sure to send me home with 5 kids books so I can read to them. What kids. They make me so proud to be their mom. This is hard stuff. I’m not sure I realized as much when I started out. But they’ve taken the punches and asked for help when they needed it.

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On Tuesday, my radiation was scheduled for 8:45. I remembered to bring my phone with me (there is a “sub-wait” room where you have dressing rooms where you get changed and leave your stuff). I have a rather eclectic Spotify playlist. 🙂

The treatment took about the same amount of time! I got lucky again.

After treatment, I met with a nurse who went over all the side effects. First one she mentioned was what amounts to a lump in your throat. Because they’re radiating the area around my esophagus, it puts pressure on that area so it feels like a big lump when you eat or drink (kinda like you swallowed something the wrong way). I’m not sure if I felt it this morning when I took my pills…but also maybe.

Another big side effect is skin changes. She said during the 2nd and 3rd weeks is when these symptoms would really show up and then get worse (of course!). She said it was great that I’m being proactive and had already started lotioning up. She did say to lotion the entire right side from my shoulders to the bottom of my ribcage. Some skin may redden even if it wasn’t directly in the proton beam.

The nurse said I could lotion up before radiation as long as the lotion has absorbed into my skin. Good to know, and I’ve already done that for this morning’s appointment. She gave me a bottle of Vanicream. She also went over these skin patches. If I wanted to use them, I would have to start this week. I guess they stay on 24/7 and you have to do it at the beginning of treatment or it doesn’t do anything. I’m leaning towards sticking with the lotion. Having all those patches on me sounds more annoying than the radiation burns.

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Tomorrow (Wednesday), I have treatment in the evening. There’s another appointment for “therapy verification,” whatever that means. Hoping to catch up on sleep tonight. Wish me luck!