It’s been a couple of days since I finished my week long adventures in the big city. I guess if you gotta have something rare and crazy like the kind of brain tumor I have, it’s a good thing I live in a part of the country that has some of the best medical resources and newest research centers. Hopkins, Georgetown, National Children’s, Bethesda….we have some of the best medicine available.
When I called my mom, who lives on the West Coast, and told her I needed treatment for a rare, inoperable brain tumor, her and her brother (my uncle) both immediately responded with “Do we need to fly her out here to UC Davis or Stanford for treatment?”. (Mostly my uncle’s thoughts.) I had to laugh and I assured her that “we don’t burn herbs or do rain dances, but I’m pretty sure we can pull off some decent medicine out here on the East Coast!”.
So, in pretty short order, tests were run and treatment options were weighed. Radiation for the brain, particularly if the tumor is near the brain stem, doesn’t always feel like the best long term option, but with some of the newest (as in recently FDA approved) machines and guidance systems, it can be the only option.
I always seem to be just ahead of the curve for the biggest medical issues a person can face, but that’s another blog.
Any who….now that I’ve survived 5 days and 5 treatments of radiation in the brain, and had a couple of days to recover, I thought I’d share a little of the experience.
Day 1: This is the day we sat down with the doc and discussed my “case”. He explained the dose of radiation and how, because of the location of my tumor, he had “sat with my case” (i.e.: had a meeting with a team of neurosurgeons, neurologists, oncologists, and his department of radiation oncology) and decided to back the dose off to 90% of what the accepted safe level of radiation near the brain stem was. He explained how the treatment works and answered questions. He explained that technically my tumor isn’t “inoperable” because if the neurosurgeon had to go in after it, he could. But there would always be some kind of permanent damage from that deep of a surgery. So, we’re gonna stay with inoperable.
Then we head into the treatment room and Doc hands me off to the tech. This is the table I’d be laying on for about an hour a day, give or take re positioning needs.
But at least I got something pretty to look at, and they played music for me. Most of the time, I just closed my eyes and tried to meditate.
Day 2: Hubs and I finally figured out the parking and arrival times (for the most part, it is DC) and I check in for day 2 of treatment. “How did you do last night?”. I felt a little woozy and tired and for some reason my voice was completely gone after treatment. But it could have been left over from me yelling my damn head off at the 3 Doors Down concert the weekend before. Or it could have been from our crazy (crappy) hotel room on JBAB and the humidity. Or it could have been because I’m allergic to frickin everything and we’re at the end of the Summer season.
Oh, and this is the door to the room I was being treated in. Wait, you guys all leave the room and close me in behind this thing?? What the hell is going on in here????
Day 3, day 4, and day 5: I typically came back to the hotel room after treatment and slept for an hour or two. Night 3/day 4 was a little tough and the doc was watching me for swelling in the brain, but I wouldn’t let him put me on steroids. I was prepared with headache meds, nausea meds, and my migraine meds and I figured it if got out of control even with all of those, then I might consider it.
Every day was pretty much the same. I’d come in, recite my full name and birth date so they could confirm they weren’t irradiating the wrong patient. Up on the table, I’d ask for a sheet to cover me because I was laying still for an hour in the hospital and one of the biggest symptoms I’ve noticed is a completely lack of tolerance to cold. Terry (my tech) would position the table…..
…and then it was time to put the mask on. The mask doesn’t actually aim anything or treat anything, but it keep me in the same position day after day, allowing the machine to hit the exact same spot.
I’d almost say the making of the custom mask was the weirdest part of the whole thing. It’s kind of like plaster of paris but for your face, and you can see and breathe through it pretty easily. But between that and feeling like the machine was looking at me as it moved around, I just found it less distracting to close my eyes as much as I could.
Once I was positioned and locked in, everyone left the room (through the crazy thick door…what the hell??) and machines began buzzing and moving around.
It was all definitely and infinitely easier than brain surgery but it has had its detractors too. I do think I’ve had some brain swelling. There’s been some head aches and a lot of nausea and I seem to get tired easier and I feel sleepy more often, but I was convinced by the end of the week that half of that was because I’d been living in a hotel room for a week and I was ready to go home.
The muss and fuss is over. I’ve made it through treatment and follow up is in 3 months. I’ve learned this week that the goal was not to destroy the tumor, but to “switch off” the cells and prevent any further growth. I will probably have this tumor for the rest of my life, but it will (hopefully) be in remission.