As soon as I gave up (decided to go ahead with radiation), things happened quickly. I met with a radiologist at my local hospital.
Quick aside: this man's job is awesome! It is infuriating that there is a common division between "arts" and "sciences" in schools - there are so many arenas where these two disciplines are fundamentally intertwined. Don't defund the arts! How can you have engineering without art? Architecture? Design? Medicine! Robotics! Critical thinking! We need to stimulate young brains as much as possible.
Anyway, the radiologist's job was to construct a three dimensional model of my brain, mapping out the blast zone (my tumor and the area around it). He also mapped out the areas that he definitely didn't want to radiate. (One doesn’t want to radiate the brain at all, duh, but it is especially important for the radiation beams to avoid optic nerves, the pituitary gland, and some other really good bits. I don’t know what those bits are exactly, I’m no expert).
He then determines how he can maximize damage to the tumor while minimizing damage everywhere else. No two tumors are alike, no two brains are exactly alike, and when it comes to the brain, millimeters matter. He needs to carefully design a unique plan for each individual.
Short history (as I understand it, I'm not providing citations here for a reason):
Radiation has come a long way since its invention. A few decades ago, doctors would radiate a brain tumor using one strong beam, aimed at the tumor. This was fairly effective, but caused a lot of damage. The beam was so strong that it damaged not only the tumor, but all the healthy tissue leading to it. Of course, the radiation beam did not know when/where/how to stop, so it continued to sear through more healthy brain beyond the tumor, creating an exit wound opposite the entry point.
In time, some beautiful, thoughtful human out there began radiating with two weaker beams that were designed to cross at the site of the tumor. This would maximize damage there, while lessening damage to other healthy tissue.
Radiation these days goes a step further, utilizing several beams that cross through healthy brain and meet at the cancer. The doctor explained this to me by describing stage lights. In short, more of my brain would be slightly radiated but less of it would be incinerated.
Some of you might be wondering about proton radiation. This is an even newer type of radiation that is extremely targeted. It even has a stopping point (like it will enter to exactly a depth of x.yy cm). My understanding is that this is wonderful, life changing technology for certain cancers. If someone has a tumor in their throat, for example, the radiologist can stop the radiation before it causes so much damage that a patient can't swallow. It is often used in pediatrics, for those poor little bodies.
It is also used to radiate brain tumors, but I believe it is more often used in secondary brain tumors that are smaller and caught earlier on.
Anyway, proton radiation was not for me. The hole in my brain is big, you see, and the tumor was growing into my brain from around that hole. Doctors didn't want to be precise: the tumor is ugly, creeping, hardly visible, nefarious. They wanted to blast the tumor and its whole surrounding neighborhood.
The radiologist had me fitted for a mask. I lay still on my back, and two women laid a plastic-y mesh matrix over my face. This material started out as a fabric that draped over the contours of my face and hardened in about 15 minutes. (I wish I could have sheets of it to play with at home).
This face-cage is important. It is imperative that you are in the exact same position every single time your brain is radiated. If my chin was slightly lower one day, or my head was turned minutely to the right on another, the entire, ornate calculation would be complete garbage - everything would be off. I got a quick scan while wearing my mask for the radiologist to work from.
I knew from all the doctors that the effects of radiation are cumulative - that I'd probably feel fine after a day, but gradually feel worse as treatment progressed. They anticipated a lot of fatigue. Fatigue that I wouldn't be able to work through.
I started handing off work at my job, knowing that I would enter another period of disability.
I got my brain radiated every morning at 9:30, Monday through Friday, for six weeks. I met with the radiation oncologist - a different doctor altogether - once a week to monitor the side effects from radiation.
In all, I received 54 gy (pronounced gray) of radiation. This is a lethal dose if received at once, but your body can handle this amount if it is meted out slowly, like, say, over thirty visits.
After just two weeks, my hair started falling out in clumps, burned from the radiation. I was exhausted. Radiation is incredibly taxing on the body. My mother drove me to appointments, as driving is dangerous when a person is as tired as I was.
My constant disclaimer:
Everybody experiences treatment differently - my surgery, radiation, and chemo experiences seem to differ from everyone I’ve met. Fatigue, headaches, and brain fog were my most notable side effects from radiation but I have a friend who experienced dizziness, nausea, and vomiting and another who had brain swelling that impaired his balance and ability to walk. Another friend worked full time the entire 6 six weeks, commuting by bus to the hospital every night after work.
The staff administering the radiation was wonderful. Everything was very precise and ran on time. I saw the same smiling people every day, they knew my name, and walked me back. They knew I felt like garbage and knew I was in an unenviable situation. Literally every one of their patients was in the same position (though not literal position - all very different people with very different cancers that might put them on their stomach or side for their own horrid personal radiation program).
If you want a depressing reality check, hang out in the waiting room of a radiation clinic for an afternoon and see the faces of cancer patients cycling in and out every fifteen minutes.
Anyway, I would lie on the table, they would put the mask over my face and clamp it to the head rest. They'd scurry out of the room where I imagined they hit a “start” button. This huge machine rolled all around me. I couldn't feel anything, I'd just listen to whatever music the techs played through speakers in the ceiling - a lot of Michael Jackson and Hall & Oates - and in a few minutes they'd scurry back and unclamp my restraints.
That was it. Quick, painless, uneventful, even kind of nice in a strange way, as I said, the people were lovely. There was a cart of quality snacks - not standard hospital fare - that you could help yourself to on the way out.
And then there was the rest of my day. Long hours, tired and disengaged. My coworkers had stepped up so I didn't have to work. I didn't do much reading or much talking. I saw some friends, went on some walks, and tried to find more information about radiation online.
My hair began to fall out and I obsessed over it, spending an absurd amount of time looking for pictures of people whose brains had been radiated. I couldn’t find any. I wanted to know if and when it would grow back - how physically scarred would I be in a year?
I began practicing the long, torturous practice of hiding my head. I looked for the right hats and scarves. I studied how beautiful women around the world covered their heads.
I practiced wrapping my head a la this beautiful woman:
It’s not easy to do! Especially with Frankenstein's monster's left arm.
I never felt confident with my head wrapped. If I could get it even close to staying put, I felt like I was wearing a costume. I tried wearing makeup so I didn’t look sick, but that just made me feel like a silent movie era “mystic” (a look that I love but that I am decidedly not mysterious enough to pull off. Or patient enough. Or interested enough). You know what I'm talking about.
I don't remember much more about those six weeks. If you ever thought that February and March feel like exceptionally long, gray months, well, it was like that plus self pity and brain radiation. In other words, grim as hell.
I finished radiation and sang goodbye to my team, feeling great (more precisely, relief). I was triumphantly done with that nightmare. At least the 9:30 appointment part of it. The radiation coursing through my brain and body was at an all time high and would continue to be so for several more weeks.
At this point, stress replaced self pity as my most prominent feeling. I was supposed to start chemotherapy when I finished radiation, but I couldn't get my local neuro oncologist (the Disney prince) to return my phone calls.