Yesterday was the full moon and my brain-zapping afternoon.
The first half of the procedure, these were my breath mantras:
“goodbye, brain mets” or “goodbye, cancer”
on the in-breaths
“thanks for not causing me problems”
is what I was thinking on the out-breaths
The second half, I changed them to:
“glowing radiant cleansing cleansing light”
that was what I was thinking on the in-breaths
“degrade gracefully, tumors” or “degrade gracefully, you confused messed-up cells”
is what I was thinking on the out-breaths (that’s a software term about how to build features so that if they fail, they don’t mess too much else up)
I had to take a break after the first LONG set of zaps and the next set. (FIrst long set was for the 5th brain met they just saw yesterday on the more detailed MRI…the one in the cerebellum but very close to the medulla). That was the deepest one and closest to something important and thus the most complicated treatment to execute–12 zaps and they were from many angles, so lots of time in between zaps to move the table to different angles and/or move the zap machine. (Zaps themselves were maybe 15-20 seconds each.)
The doctor said there is maybe a 1% chance of some kind of damage/side effect from the radiation delivered to that met, because of its proximity to the medulla, which is important. It would be a motor-control kind of complication, he thinks, but he also said “I would tell you it was one in a million but that would not give you any information”; he was very confident that they had done the best they could to minimize the collateral radiation dose to anything but the tumor and that there would not be a problem. He said he consulted with some other radiation oncologists across the country and they recommended that it would be safe to use even more radiation without more risk of side effects. But he stuck with a lower dose that he thinks will be enough, and safest. He showed us the beam plans (there were 56 different beams) and how they targeted the tumors and how the radiation dose fell off outside the tumors. Interesting stuff. So anyway. After talking to him for a while and looking at scan pictures, we waited & waited because they had to correct something in the machine, so the procedure started 90 minutes after they thought. I think my Xanax was mostly used up during this waiting time!
Eventually it was time to start so I got on the table, got the mask snapped down, and they did all the measurements to make sure the mask and I were in the exact right place to the milimeter. To do this they put some kind of frame or hood on top of the mask, then stuck rods through channels in the frame to touch certain points on the mask, reading off the distances to see if they matched the distances they recorded the day they tested the mask. I had to wiggle a bit to make them match at first. The mask is attached to stanchions that are attached to the table and everything is minutely adjustable in all dimensions…they kept putting a bubble-level on my forehead too! After each series of zaps they had to re-check the leveling and stuff, but not the rod measurements.
So after first long set and the 2nd set it was about half done. And by then the back of my head, my scalp, was burning burning burning with hot-sauce-in-the-eye-like pain due to my head resting on the plastic mesh of the head hammock and not being able to move one little bit. The pain didn’t start for about 15 minutes, but then got worse and worse. Also the Xanax wore off during the first long set of zaps–I was nice & woozy at first when they were doing all the measuring and set-up, and had little dozing dreams, but then rose RIGHT to the surface eventually.
It was hard not to move my pelvis and my legs but I wiggled my feet a bit and shifted my hands around so that was bearable. And I kept relaxing my shoulders. The mask really wasn’t that bad at all, just made me a bit wiggy eventually. It was the scalp burning that was so bad, and I had to let my head relax “into” it for all the zaps rather than tensing up.
So I asked for a break and got to get up, rub my scalp, weep a bit, go pee, and take another Xanax and a pain med to try to make the scalp pain less, and hang with Eric for 10 minutes. After that I was ready to get it all over with.
So back on the table, head in the hammock, knees resting on the wedge PLUS the (ancient) sofa cushion we had brought from our reading nook to give my legs a bit more elevation to save my lower back (it worked, and the cushion is from sofas my dad had custom-made for his house in 1973, so there was a little dad in there with me). Snap on the face mask, adjust by wiggling, then they did the measurements again with the little rods and we were off on the second half–three sets of zaps. Mets numbers 3, 4, and 5. For 10 minutes, blessedly no scalp pain, but then it started again. And got just as bad, but I knew there was less time to endure it now. The Xanax worked for about 30 minutes; I could tell because I didn’t need to move my feet or hands at all then. I saw that Xanax is made less potent by steroids, and boy was I dosed up with steroids for the procedure. So that was probably part of why. I was also reminded, though, of the “elephant-sized dose” of Valium I needed when I had my wisdom teeth out during college, and the time I snapped myself right out of marijuana goofiness when trying to treat nausea in 2006 (I didn’t like the combination of the dumb smile on my face and the fact that I wasn’t feeling a bit happy, and with what seemed like an actual snap, back to brain normality).
I did my breathing mantras whenever the zaps happened, and listened to the music I was allowed to bring, and wished it would be over soon.
After set #3, they came in and said the next two would only take about as long as that one had. Yay!
After set #4, they said the last one would be quickest because it was 10 zaps and 7 of them were with the table in the very same position. Yay! I was getting pretty much to the end of my rope at this point with the scalp pain. I started counting them, but realized i didn’t need to (and could focus on “Telegraph Road,” a 14-minute wonderful song by Dire Straits) because when the table moved I would know I had 3 left. Each of the last 3 had a different table position and then we were DONE!
And they came and took off the mask and I could lift my head and in a bit sit up. Oh what a huge relief. And then walk back to Eric in the private waiting room. Hallelujah. The nice nurse Joanne offered me a wheelchair to get there but I said only if she rode in it and I pushed. She said “No thanks, I’ll just go remove the evidence now!”
We got our stuff together, went over the meds schedule, made an appointment for next Thursday, and left. I had awesome sushi in the car bought for me by Eric (no lunch). I had my pillow and my huge purple scarf my mom gave me and I had a little cry and now I am tucked up in bed.
So, a good day?!?!?