Preparing for Radiation: My First Appointment

  Over the next few weeks, I'll be sharing regular posts about how I'm preparing for radiation. I'm hoping these can help someone else, as I struggled to find a conversational source like this that dealt with the subject. For more information on my brain tumor, check out these posts.

 After my first radiation treatment, I was excited to come home and write this post and tell you about all the wonderful and crazy things that had taken place, but there's so much more life going on right now than I have bandwidth for, and writing a post fell to the bottom of the list. That worked out well, though, because each day added on a little more insight as well as intrigue, and I think this post will have benefitted from waiting until the end of the week to be written. Come along with me and find out about what I learned in my first five days of radiation therapy!

 As expected, my husband had us up before the crack of dawn on the first day of treatment. He actually set his alarm for 4:45 am, even though we didn't get to bed until after 1:30am having returned from our trip the night before very late. But we were up, dressed, and out the door about 5:20, on the road to our 7:30 appointment. We arrived about 6:20am, which seems really early but had we left later the traffic would have been worse and we likely wouldn't have made it on time. We weren't sure what time the Radiation Oncology Center opened its doors, but thought we'd check that first before looking for somewhere else to wait, and sure enough, it was open! The digital board that showed whether doctors and rooms were on time was not up yet, there was just the standard screensaver with stars flying at you, but the receptionist was at the desk and ready to take my name and birthdate, which thankfully I remembered 😂. Then she gave me something I was hoping for and very happy to see, a parking pass. I was a little concerned that we would have to pay $10 per day for parking, $300 over the course of treatment. I know that's probably a drop in the bucket compared to what treatment will cost, but it's nearly our whole gas budget for a month so I wasn't looking forward to that, but with the pass our parking each day of treatment is free! While I was checking in, my husband said, "Look! It's the Enterprise!" I looked at the screen and all I saw were stars. I wasn't sure whether he was pulling my leg since, as you probably know, I'm quite the Trekkie, but later that week my daughter and I watched patiently and sure enough, the Enterprise made an appearance! We found a seat in the waiting room and entertained ourselves for a bit before the tech came out and called my name.

 He introduced himself as Ken, and that warmed my heart because it was my paternal grandfather's name. I was a little disappointed that my husband couldn't come back with me, but I soon understood why. Ken took me over to the board, which was no longer a star scape screensaver, and showed me where to look to see if my treatment was on time each morning. If you'll remember from last week, my radiation buddy is named Zora after the sentient computer on the Starship Discovery from my favorite series of the same name. My jaw dropped when I saw the board and Ken told me that the radiation machine I'd be receiving my treatments on was named, wait-for-it, Discovery!

 Ken told me that each morning I was to check and see if Discovery was on time, and if so, I was to walk myself back to the secondary waiting room. To do so, I had to navigate a long, winding hallway down the "yellow brick road" as he called it, following the fishy signs. Yep, for some reason they decided to make the radiation area fish themed and the art got a little weirder as you went on...

 We ended up in a small waiting room that he showed me could be opened either with a door handle, or a wave - Star Trek Style as Ken called it. This is where I came to understand why my husband couldn't join me. The waiting room was tiny, and over the week, had five or six patients at a time in it. If each of those patients also had a +1, it would be standing room only!

 Because it is my head being treated and I was wearing a t-shirt with a wide neckline, Ken informed me that I did not have to change into a gown. That worked out great for me, because this was my planned outfit for the duration of treatment! I soon found out what a blessing that was when all of the other people who shared the secondary waiting room with me had to wear double gowns (back and front) and remove everything from the waist down or up, depending on what area was being treated. Not only that, but the men being treated for prostate cancer had to have their bladders full to a fairly specific percentage, so they are always chugging water and running to the bathroom to, "let a little off", hoping to meet their prep requirements so they don't get kicked off their machine and have to start all over again. I never thought I'd be so grateful to just have a brain tumor! While waiting back here, I met another patient that would be there the entire time I will be, he was on day 3 of 38 and I only have 30. To add just one more piece of comfort and familiarity, he has the same name as my husband and my dad. Kinda cool!

 After waiting just a little bit, Ken came back to get me and bring me in to meet Discovery. In the outer room, he showed me the computers and screens that monitor and control the machine, or "Zora" as he affectionately referred to it for me. Then, once in the room, he had me take off my glasses (my earrings were already out) and I left my cane on the other side of the room as well as Zora the Zebra and I headed over to the hard, flat table I was to lie on. It took a couple of tries and a little "scooching" to get me into the correct alignment with the solid headrest, but once I was lined up, the two techs - Ken and Chandler - got to work making me as comfortable as possible. They placed pillows under my knees and offered me a warm blanket, which I refused on my first treatment and accepted on the rest. Then came the mask, the part that I'd been dreading for three years leading up to this moment. I'm not going to sugar-coat it, that was tough. It doesn't just set over top of your head, it actively presses it into the solid headrest below you, effectively keeping you in exactly the right position. And, in that, it became a source of comfort instead of just constriction. You see, radiation therapy is intentionally very specifically targeted. You want the majority of the radiation to go to the tumor, with as little as possible affecting the surrounding tissue. On my second day of treatment, we saw my doctor as a part of a standard weekly check-in where she explained this to us and showed us the image below to explain how different areas of the head would receive different amounts of radiation as represented by the colors in the image.

 The only way to do this is to make sure that my head is in EXACTLY THE SAME POSITION EVERY TIME. To do this, they use multiple tools. The first is the mask that holds me still, the second are laser beams that align with marks on the mask and my sternum, and finally, each time they put me into Discovery, it takes a CT scan and then adjusts the table a millimeter here or there to make sure everything is lined up just right. This first morning this all took a little longer as they got things set up and then had the doctor in charge confirm everything before proceeding. It was very sweet, Ken had the theme song for Voyager, one of the Star Trek series, playing when I came in and got settled, then he asked me what I'd like to listen to, and he turned on Forrest Frank for the remainder of my session. Here's an idea of what this all looks like for me every day:

 When the treatment got going, I caught a faint, strange smell. The word that popped into my head was "Ozone". Only a few people I mentioned that to knew what the smell was, so I'll describe it here for you as sort of a bleach scent, like a pool deck or gym. Interestingly, I had that scent confirmed to me both online and by Ken later with that specific word! A bit later, there were some flashing lights, so I kept my eyes closed - didn't want to go blind from laser beams and I was a little surprised that they hadn't warned me about them! As I learned more about this treatment over the week, I was absolutely floored to find out that there are, in fact, no smell and no lights associated with the machine! It turns out, the radiation just "tickles" the olfactory nerve and other sensors in my brain that create hallucinations of those things. Once I learned this, I did a little experimenting and found that if I kept my eyes open the lights just flickered in my peripheral vision, but if I kept them closed they were quite bright. The first one is blue and travels from left to right across my left eye for ten seconds before it dissipates and then a light purple/pink light travels from right to left across my right eye for ten seconds. There are a few clicks and what seems like a fourth treatment area (the scent and two eyes being the first three) and I don't experience any sensory hallucinations with this one that I've identified, so I wonder if I'm missing out 😝. After this, the table repositions and slides me out of the machine, lowering me towards the ground. The two guys come back in the room, remove my mask and the pillows under my knees, and wish me a good day! Then all I have to do is follow the "yellow brick road" back to the lobby, going in the opposite direction of the fish.

Here's the Thing: Each of these small "coincidences" - the starship in the screensaver, the machine being "Discovery", the men I encountered with familial names - served as comforts, helping me feel like God was with me each step of the way. The first treatment was hard and a little scary, but they got much better over the course of the week and I'm not dreading the rest of them. Maybe the long drives back and forth at the crack of dawn, but the treatments aren't bad at all!