Preparing for Radiation: Getting the Ball Rolling

 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.

 From the time I was given my setup appointment for June 2nd, my husband and I felt like a clock was ticking. On the one hand, we felt like we would get more information at the appointment, including a promised schedule. On the other hand, this appointment would start to make it all real, and it certainly did! I think I came out of it feeling a little shell-shocked. For those interested, and perhaps those who might come after me and want to know for themselves, I'll walk you through our day.

 As per usual, we arrived for my appointment about an hour beforehand. My husband is a big proponent of being early! I factored this in, though, and packed us a lunch to eat since my appointment time was 1pm. We got to the hospital not knowing where Radiation Oncology was, so we stopped at the info desk where they directed us to the elevators on the far end heading for the first floor. This happened to be right next to the cafeteria which was convenient for our lunch! We had leftover pizza from the day before, which I love cold but my husband doesn't do cold pizza so he went in search of a rumored microwave. I'm pretty sure he must have found it on the other side of the hospital since several minutes after he left he sent me a text saying he had almost gotten there. When we finished eating, we headed across the hall to check in. While there were masks available, and a couple of the staff were wearing them, most of the people present were not so it seemed that unlike the Tumor Center, they weren't too concerned about masks in this area. Strange, but I wasn't going to complain. I hate wearing them! We didn't have to wait long before a tech got us, escorted us back, got my weight and then took us to an exam room where he took my vitals and left us to wait for our first doctor.

These rooms were much smaller than the ones upstairs in the Tumor Center, and not nearly as fancy, but really it's the people that matter in this process, not the decor. Three years ago, I was introduced to the process at a teaching hospital - the hard way. Very much like on this day, I was taken back to a room by a tech who took my vitals and then a doctor came in. What I didn't know was that this was a student doctor and they did not have the final word on my treatment, nowhere near it! My first student doctor will forever stand out in my memory because he was ready to extract four of my molars - just in case that might help with my jaw pain 😬, despite the fact that there was nothing of note on my x-rays. Thankfully, his supervising doctor came in next, reassured me that they would not, in fact, be pulling any of my teeth, and pointed out what no other doctor before her in the preceding weeks had noticed - I had a sinus infection so bad it had blown out the back wall of my sinus and there were tiny bits of bone floating about in my skull! Since then, I've seen many, many student doctors followed by their supervising, much more experienced, teachers. I've learned to be polite and patient with the student doctors and not take what they say too much to heart. So, when my student doctor came in to brief me on all the side effects of radiation therapy, I was not overly stressed by the way she stuck to her script and wasn't really able to answer any of my questions. I knew my main doctor would be coming shortly. She started out with the goals or "intended benefits" of treatment: improve local control (prevent tumor growth or recurrence in the area treated), improve survival rate or chance of survival, improve symptoms caused by a tumor. Each one was neatly checked off the page indicating that she told me about them. It was kind of funny though when she told me that one of the goals of treatment was to shrink my tumor and I stopped her there asking if this was new information because I had been told that wasn't possible, she basically put her hand up and asked me to hold my questions till the end. Turns out she had a script she needed to get through and she couldn't handle interruptions. She restarted back at the beginning and got to the part that not all tumors will shrink. I'll admit I teared up as she read the list of likely and possible side effects:

Short term-

* fatigue

* skin irritation

* nausea

* hair loss

* worsening of symptoms

* dry eyes

* muffled hearing

Long term- 

* prolonged fatigue

* neurocognitive decline

* increased risk of stroke

* brain injury

* radiation necrosis

* damage to brain stem

* dry eyes

* hearing loss

* pituitary dysfunction

 That's enough to get anyone's heart beating a little quicker! Of course, the thought popped into my head, "Why am I doing this again?" Oh, yeah. If I don't the tumor will kill me quicker. Hmm. On that chipper note she had me sign the paper saying I understood all the possibilities so I couldn't sue them if they came about, and she left us alone for a bit until the next provider came in. 

 The nurse came in shortly and she was truly lovely, someone I look forward to having on my team! She started talking through my questions with me when my Radiation Oncologist arrived. I learned something new today. Evidently, they call themselves, "Rad Onks". I had never heard that abbreviation and it made my heart chuckle. The nurse stayed in the tiny closet of a room with us as well as the student doctor, so it was a full house! Picture five people in your bathroom having a heart-to-heart. My doctor asked me to summarize what I understood of what I had heard so far (testing the student doctor's presentation? My short-term memory? All of it?) then asked if I had any questions, which of course I did! My husband and I had been saving them up ever since my last appointment with her, but I had separated them into ones that I thought the nurse could answer for me and ones that the doctor would be the final authority on, so I didn't take up too much of her time. My first question was why she had chosen the type of radiation therapy for my case that she had (IMRT)? She's been a practicing Radiation Oncologist for 15 years now, she actually heads up the department, and she's seen a lot. The two types of radiation therapy used for a tumor of my type (Pilocytic Astrocytoma), in my location (the 4th ventricle) are IMRT and proton. Her decision was based on her experience of seeing the IMRT be more effective in cases like mine, and I couldn't argue with that! Next, I asked her if she had taken into account my EDS in my treatment plan? To my relief, she was able to share that she had treated 3 people with EDS in the past (the fact that she had that number at the ready means that she came prepared) and had not seen any related differences in their response to treatment from someone without EDS. So, in her experience, EDS does not contraindicate or offer reason to adjust radiation therapy. This was in line with what I had learned from my EDS Facebook group, so I was at peace with her answer. The final question was the one with the most disheartening answer: how will we know if radiation therapy worked? I had hoped that my tumor would turn from purple to blue on a scan or some other magical indicator. The bad news: we won't. We will just keep doing MRIs to check for growth like we were before. If it doesn't grow, maybe it was the radiation, maybe it's just because it's a slow growing tumor. Apart from God telling me when I get to heaven, I'll never actually know if going through all this was worth it. That's a hard pill to swallow! As an alternative, I could skip it and my tumor could grow and I could die soon and then I'd know that I should have done radiation in case it could have helped. I don't think that's preferable. Hmm. Again.

 Once my doctor and her student had left, I went over the rest of my questions with the nurse. These included things like hair and skin care choices, medication changes I'll need to make, and my husband's all-important question: do we get to keep the mask? He was very pleased to hear that we do. I wonder which wall on my house will be blessed with it? The nurse had to check in with the doctor about the meds, but I was disappointed to learn that I will have to discontinue my L-Theanine, which helps me sleep the little that I do, and my B-12 which helps with my already nearly non-existent energy from not sleeping well. Combine that with the radiation fatigue and I could be in for an interesting ride!

 When we finished with the nurse, the simulation technician came to get us. He was AWESOME and made the whole process much more enjoyable. He showed me around the lab, demoed a mask for me and explained the process so I'd know what to expect. To my dismay, they do all the markings on the mask itself now, so I did not, in fact, get my first tattoo. He had me lay on the really hard table on a really hard plastic head frame. I was more than a little concerned about this with the back pain and migraines that I deal with, but there's not much that can be done about it. The priority here is having me in the EXACT SAME POSITION for every treatment so the radiation is going to the correct, really tiny spot in my brain. If I'm in pain in order to make this happen, that's a necessary evil. He did get me an extra pillow to put under my knees which helped a lot, and he made a note on my chart that this needed to be a part of my setup. Oh, and he gave me a cozy, warm blanket and a little ring to hold onto with my hands too. He mentioned that it would be ok for me to bring a stuffed animal to take the ring's place, which made me very happy since my new radiation friend, Zora, was on her way to my house already.

 Once I was situated on the table, the tech brought over the prepared mask material. It was a plastic mesh that had been warmed to become pliable, set in a rigid frame. He laid the material over my face and then slowly pressed it down until the frame clicked into the latches on the table. He loosened it a little over my nose, upper lip, and neck and then, once it had cooled quickly and hardened, he turned on the laser beams! NGL, I think this was my husband's favorite part, with a close second being that my mask was green, his favorite color. The lasers shown on the mask and he placed tape and made markings at each spot. That way, they can be sure that everything is lined up right when I use the mask on the table in the actual radiation room. 

 Then he slid me into the CT machine where, for the next 10 minutes, they took lots of scans and images. The doctor had told us that she will overlay these with my MRI from April in order to pinpoint the radiation beam targeting. That's pretty much all there was to it! The person working on my schedule let me know that things weren't finalized yet, but that I would see everything in MyChart soon, and sure enough, by the next day all 30 treatments were in there! Wait! I thought we were only doing 28! That was an interesting quandary to watch my doctor puzzle through. The standard is 28-30 treatments for my situation, and she had originally leaned towards 28 since the less radiation exposure the better, but then when my husband reminded her of the "unusual enhancement" on my MRI, she started leaning more towards 29. Based on my schedule, I'd guess she landed on 30 after all. My husband's request (and he's my driver so he gets a lot of input here) was that we do our appointments as early as possible and they were able to accommodate us in the 7:30am slot for the duration of my treatment. Yep, that means we'll be heading out at 5:30am every day for six weeks - well six weeks and a day now because of the 4th of July holiday being observed on the 3rd at the hospital. I'm going to learn to shower at night and roll out of bed and into the car as quickly and smoothly as possible! Thankfully, I can take naps 🥰

Here's the Thing: None of this is fun, but often that's life. I'm heading into a season that God has clearly directed me to, and I'm trusting Him for it. At least now we have the info, all that we can anyways. Two more weeks and all this craziness begins!