Let’s Fry That Noodle: Full Brain Radiation Therapy


When I was told I need to get full brain radiation treatment my world stopped. It sounded like the absolute worst type of therapy I could receive. Don’t get me wrong, it is absolutely intense in the way we need it to be in order to get this shit (cancer) under control. Our goal is to destroy what we can and shrink what we can’t, so that we can manage it for as long as possible. There was just too many tumours in my head for us to do a targeted radiation or even surgery. And sure, those are scary too in their own ways, but this meant radiating my whole brain—even the good stuff.

The radiation oncologist didn’t offer up the alternatives, though I had been googling. And she had to read off all the possible side effects of them radiating my whole brain. 

Needless to say I couldn’t breathe. Nobody prepares you for that.

In an attempt to prepare myself, I tried to find stories of people who had been there and through it. As I’ve mentioned before, it’s suprisingly difficult to find real life stories of people who have been there and living it. I did manage to find some wonderful ones through MBCBrainMets.org, which were super helpful in putting my mind to the actual living through this and seeing the other side. But that fear of the unknown and all the side effects listed made me afraid to my core.

So, I thought I would share here what my experience was like. Hopefully it will help someone else feel not so alone in this journey.

The Fitting

Once we had my treatment plan, things moved fast. First up was fitting me for my hockey mask. Full brain radiation therapy requires you to be held in place so that when they zap you, they are getting the exact areas they want and avoiding as much of the good brain stuff they can. They still zap your full skull, but they can direct things still to try to reduce the impact on the parts they don’t need. 

The appointment was in the mask department down in radiation. A team of two therapists welcomed me. They were incredibly kind, as I explained my high anxiety and fear about this. They let Blair stay in the room with us for the majority of it. I’m not normally a claustrophobic person, but my anxiety and fear of the unknown was in overdrive. 

You lay down on a bed of a CT scanner. They put a little beanbag like thing behind your head to settle in. Then they place a warm plastic mask over your face. It has lots of holes in it so breathing is no problem, and they make sure its cool enough so it feels more like a warm towel on your face. The therapists have to work quickly to mould the mask to your face before it cools off too much. They make it form fitting so that it will hold you tight in place, and latch it down to be sure its tight.

Once that’s done, they take CT scans to make sure they can reference them later during treatments. Just so they know you are for sure in the right spot. They both (and Blair) had to leave during that part.

I asked if I could cut my hair, and they said no because it would change the fit of my mask. So that I left until after my last treatment.

And that was it! They unlatched me and said they’d modify the mask so it had eyeholes. Then sent us on the way.

Treatment

For something so big, treatment actually feels small. 

Ringing the bell at my last treatment.

You go to your appointment. The radiation techs welcome you, you lay on the bed of a CT scanner. They put your headrest and mask on and latch it up tight. It did have eyeholes, but I mostly kept my eyes closed (both to help my anxiety but also I can’t see anything anyway). They will talk to you through the mics if you just need a reassuring voice to tell you what’s going on.

First they do some CT scans to make sure you are absolutely in place. They can adjust the bed using tech, so you feel some adjustments as they get you in place.

Then they run the radiation. It was like a blue light shining in different places. It also smelled like chlorine in my nose. The machine made a small vibrating sound as it worked its magic. For me they zapped from two different positions.

And that was it. The process took 10-15 minutes, for five days. Like I said, it felt so small for something that is going to do so much. So much so that I was having doubts about if the treatment was even doing anything (we actually had to ask the radiation oncologist because I just wasn’t really having side effects). She assured me that this was totally normal.

You’d better believe at the end I rang that fucking bell.

Side Effects

Rashy forehead side effects.

But, speaking of side effects, there are some. They tell you they will get worse about 2-4 weeks after treatment because the radiation is still doing its work in your head. So even though you might not get side effects right away, they can come and find you later.

As I’m posting this I’m only one week out from my last radiation treatment, so I might not have been visited by all the side effects yet. But here’s what I’ve gotten so far.

  • Fatigue. My energy during treatment hits me low sometimes. And I can definitely feel it regularly that I don’t quite have the energy before. I am sometimes huffing and puffing from trying to do normal things. Overall it has been manageable so far.
  • Loss of balance. This catches me off guard. I think I’m totally fine, but then I’ll find my body pulling to the right as if the world is just doing its thing and not me. Especially if I’m bending over. I wiped myself flat on my face in a moment of running to get my phone.
  • Insomnia. I’m on a sleeping pill for my anxious squirrel brain, but I wake up in the wee hours of the morning and can’t go back to sleep. Not every morning, fortunately.
  • Forehead rash. I look like I’m 13 again, as my forehead has gone all rashy and acne filled. It itches, but alas. 

That’s it so far! I buzzed my hair anticipating that it will fall out this week. I’ll report here on my symptoms should they arise in the next couple weeks. After that they should start to get better, with me being back to ‘normal’ by the end if summer.


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