November 1, 2018
I had to have a new MRI and a CT scan on my head in the past week to do radiation planning. On Tuesday, they did a run through of the plan and I got my first treatment on the 2nd tumor. I had one treatment per day for a total of 3 treatments.
I’ll have a follow-up MRI in a month. The first thing they’ll look at is the size of the 2nd tumor to make sure it’s shrinking and not growing. Then, they’ll be checking the size of the tumor bed from the one that was removed and, hopefully, it will have shrunk some, or maybe enough to do the radiation on it as well. If not, we’ll check it again in 3 months and hopefully be able to radiate it at that point. The reason for this is that there are still likely microscopic cancer cells where the tumor was removed. Radiation kills those cells so that the rate of recurrence in that same spot goes down to some minuscule amount.
I was not looking forward to doing this radiation. There is a part of me that would have rather had this tumor surgically removed. Unfortunately, the risk of more complications and the possibility of blindness were enough to warrant taking a less risky path, which meant doing lower dose radiation over a few days rather than a single-shot Stereotactic radiosurgery (SRS) to the 2nd tumor. There is also a big risk of radiating the tumor bed where the 1st tumor was removed for now. It was a big tumor. The Brain Radiation Oncologist explained to me that when the tumors are as close together as mine were, and the size that they were, there’s a bigger risk to damaging healthy brain tissue, which would also lead to other vision and brain issues. So the plan is to radiate the 2nd tumor with a lower dose plan now and see where we are in a month or three with the tumor bed, and hopefully get it radiated at a later date.
How Brain Radiation Works
To do radiation on your brain, they make a tight-fitting mesh plastic mask that fits over the head and face. The point of the mask is tri-fold. First, to make sure that you are in exactly the same position for each treatment, make sure you don’t move, and to have a place to put the markings for the machine to ensure you’re lined up correctly each time. When I had the breast radiation just a couple of months ago, I got a handful of pinpoint tattoos on my skin where the lasers would line up. They don’t want to tattoo your head or face, so they put those markings on the mask instead. Thank goodness for that. I am not interested in looking like a Maori warrior, even though I think they look kind of cool. Or maybe I should contemplate that. Why not? I’ve got nothing to lose.
When I went in for my breast radiation, there were 3 radiation plans to run through. For my brain tumor, I had 6 plans. The first one went from one side to the other across my face. The next 3 went from front to back and then to front again. The last 2 were more on a diagonal and also went front to back and then to front again. The process took about 30-45 minutes despite each plan taking anywhere from about 20 seconds to maybe a minute for the longest one. First are the x-rays to make sure you’re in the right position. Then, in between plans, the technicians come in and move the table between each one. I was rotated on the table 3 times during these sessions.
The Brain Radiation Experience
Laying on a radiation table with a really tight-fitting mesh plastic mask over my face and head wasn’t any fun. I’m not horribly claustrophobic, but this sucked. In order to get through it, I reminded myself it was only 3 treatments and not 3 weeks’ worth. I asked the technician to cut holes for my eyes, nose and mouth. I didn’t realize until I was clamped down tight for the first verification test that I wasn’t going to be able to breathe at all through my mouth during these sessions. Guess I could have passed on that part. Fortunately, I had them make sure I could breathe through my nose, and I was able to relax enough to get through the 3 sessions.
Brain Radiation Complete
I’m glad to be done with this. I am hoping that the treatment works the way it’s supposed to and the tumor starts to shrink and I get some more of my vision back. In a perfect world, I’ll wake up one morning a couple of months from now and notice that I can see pretty much like I did before all this started. That’s my pipedream. Whether I ever get that or not remains to be seen. Of all the cells in your body, the brain is the slowest to generate new cells, and when it either makes new ones or repairs old ones, they’re the slowest growing cells we’ve got. So… that means that it could be more than a few months before I’m at a stable enough vision point to get new glasses again. One step and one thing at a time.
From here, I need to pay attention to radiation side effects. I’m to watch for neurological changes, nausea, balance issues, and headaches. I will start ramping down the steroids tomorrow. Hopefully, I’ll be done with them in a month’s time. The side effects from the steroids are impacting my vision and appetite, too. Last, but not least, to add to my already wonderful Neuro hairstyle, I’ll have a bald spot for a bit where my head was just radiated. This, of course, is the very least of my worries. I know it’ll grow back. It’ll be interesting to see what pattern falls out.
For the next 3 weeks or so, I’m focusing on resting and healing. I’ve taken a leave from work. After tomorrow, I’m not beholden to anyone at the hospital for a bit. That will be a welcome change. I’m tired of racing from appointment to appointment, some of them between hospital campuses across the city getting ready for this treatment. Enough is enough for a while. I need a break.