Managing Care After Active Treatment

Managing Care After Active Treatment

April 22, 2021

Written by Brains for the Cure Ambassador and Survivor, Anna

I grew up with a relatively normal childhood. I would play basketball, go home and do homework, and eagerly wake up early for morning cartoons. Some days were haunted with headaches and weird pains, but ultimately, I felt very normal, and was an incredibly happy, outgoing kid. And then my whole life changed on February 9th, 2016, when I was diagnosed with homonymous hemianopsia. In simpler terms, this means that I had lost peripheral vision in the right side of both eyes. My doctors were concerned as to how this happened in a healthy 12-year- old like myself, so they sent me in for a brain MRI two days later.

On this dreary Thursday morning, I went in for a longer-than-usual MRI. When I saw the radiologists look at me in that “I’m sorry” sort of way, I knew something was wrong. As I was being dropped back off at school, I told my mom to pick me up if there was anything wrong with my report – I did not want to be in school and have something go wrong. And, surely enough, when I was called to the office at 3:43 PM, I started crying as I walked down the halls of my middle school. I checked my phone to see a 5-letter text from my mom that would change my life forever: “T-U-M-O-R.”

I met up with my dad outside the school and cried as we drove to meet my brain surgeon, Dr. Sacco at Medical City Dallas. We went over the MRI reports together, and then scheduled my brain surgery for February 25th, only two weeks later. My surgery lasted 6 hours, and they were able to remove 90% of my tumor. The 10% left consists of two cysts in my optic tract, which, if they removed the cysts, I could have lost my complete vision.

Now, I’d like to say that after surgery, this is where everything got better, and I went back to living a normal life…but this unfortunately isn’t the case. After surgery or treatment, you learn how to live with a new normal. I had monthly MRIs for about 6 months, and after

these MRIs showed no growth, I graduated to MRIs every 3 months. After a few checkups, I graduated to MRIs every 6 months, and after a few of those, annual MRIs.

Because of the location of the tumor, my optic nerve was damaged, and this nerve is one of the few nerves in the body that does not regenerate. Since my vision cannot improve, we monitor my vision loss with field vision tests between my MRIs. I like to call these field vision tests extremely exciting, expensive video games. You get to sit in a “bubble” for 5 minutes, close one eye with an eye patch, and click a button every time you see a flash (without moving your head). Then, you get to switch the eye patch over to the other eye and repeat the process. After this test concludes, a vision report is printed out showing what your peripheral vision sees. A normal person has completely “white” scans, meaning there is complete vision in both of their eyes. Mine shows up as half black/half white. If my results look like what they do in previous tests, then it helps to confirm that there is no excess residual/new growth. Thankfully, all my scans have been similar, and I have not had any growth post-surgery.

Additionally, after surgery, I had lost most of my strength on my right side – I was barely able to hold a pencil, had a very severe limp, and smiled with one half of my face. This led to my body naturally compensating and doing everything to my non-dominant left side. However, with years of physical therapy, I have regained some strength – 16 months after surgery, I hiked the hardest trail in the Appalachian Mountains. Chiropractic and acupuncture care have also helped to an extent, by alleviating the pain that is caused by using my right side.

Outside of physical pains and scans, I had to take anti-seizure medications for the first year after surgery. To put it simply, these medications are very, very cruel. The first seizure medication I went on was Keppra, which caused a huge volley of rage issues and mood swings.

We quickly switched to a different medication, and I can’t remember the name, because this medication made me feel like a zombie the entire time I was on it. I would wake up and not be able to move and would have severe brain fog. That is when my doctors switched me to Quedexy, which was the worst of the 3 medications. Quedexy worked in two ways: it worked as a seizure medication, and a diet pill. And let us just say that a diet pill shouldn’t go into the hands of a pre-teen who is grasping for some sort of control after having their whole life turned around. I think my main mistake was quickly taking whatever pill was handed to me, without asking about side effects or doing my research. So, I urge you to ask the doctors about the medications they want to put you on – these seizure medications can be nasty, and some of them still have psychological impacts on me today.

Speaking of psychological impacts, I have gone to a therapist for the past 4 ½ years on and off after my diagnosis. I sometimes hate to say that I need help, but I do, and ultimately, it is okay to not be okay. Cancer patients are always seen as being so mentally strong, and that can put a lot of pressure on us when we AREN’T feeling strong. So, please do not feel like you have to be strong all the time – it’s okay to cry and to wish that things were better. Do not let your sorrows define you, but know that you are allowed to be raw, and to be honest about how you’re feeling. Recovering from cancer is a LONG and grueling process, and there are going to be days you do not want to go through the pain anymore. But know that you aren’t alone, because I can promise you that, as a fellow survivor, I have felt the exact same way. You are NOT alone.

Managing care after active treatment can be difficult, and it is a long process. But just remember to keep putting one foot in front of the other, because although it’s difficult, if you improve by 1% every single day, you’ll see the results you want to see. I promise.