Following my initial brain surgery in April 2014, it took time to come up with the further “treatment plan.” Given that I am so fortunate (insert sarcasm here), my tumor, an anaplastic ependymoma, is extremely rare.
All of my factors also played into how rare it was:
1.) It was a primary tumor in my brain – typically, my type appeared in the spinal cord and remained there, or it would metastasize to the brain; there was absolutely no trace of cancer in my spine (confirmed through spinal taps – oh my god, the pain!)
2.) My tumor is considered a childhood/pediatric cancer, so it is rare to find it in adults (some statistics show that only approximately 70 adults in the U.S. are diagnosed with a malignant, primary brain ependymoma every year.)
3.) There are extremely limited studies regarding ependymomas, given how rare they are. Thus, treatment options are basically – surgery, and/or radiation and/or maybe chemo. Yet, the few studies showed that combining radiation and chemo didn’t make much difference, if any. Thus, radiation was the standard protocol following surgery
4.) My surgery resulted in a total resection of the tumor. Thus, I was “technically” cancer-free, for whatever that was worth…
[DISCLAIMER: This information is NOT meant to be taken as medical advice or gospel. https://cern-foundation.org/ is the primary source for information on ependymomas)
So, following my surgery, I met my amazing “team” of doctors. They are a god-send and I am literally thankful every single day for them. My “team” consisted of my neurosurgeon, neuro-oncologist, seizure neurologist and radiation oncologist. This didn’t even include the numerous doctors, who served on my hospital’s tumor board and studied my case alongside my primary doctors.
Together, my team came up with the plan – I would undergo 6 weeks of radiation (30 sessions 5 days a week) and no chemo. I didn’t really think twice about it. What other choice did I have? I trusted all of these doctors. I was being treated at one of the top cancer hospitals in the country. Plus, there was really no other studies/information to show any alternative treatment.
Of course though, the idea of actually radiating my brain sounded insane! Um, weren’t we all taught throughout our lives that radiation was a really, really bad thing? Ex. “Don’t stand in front of the microwave! Radiation!” However, I don’t recall even asking that many questions. I knew the really basic, possible side effects – swelling on my brain, fatigue, hair loss, etc. So, I just kind of casually decided, “Okay, let’s do it.”
One of the most disturbing experiences regarding the radiation was the mask. For those who don’t know, in order to radiate the brain, a patient needs to undergo a simulation. Amongst other things, that involves forming a mesh mask to be placed on your face and around your head. The mask would then be strapped down to the radiation table during your treatment. It is so sci-fi I cannot even describe. It is scary. It is beyond uncomfortable. It creates such pressure around your entire face and head. Sometimes, it felt like I couldn’t breath properly or swallow. I hated it.
I know some patients actually keep their masks. I literally never looked at my mask. I refused. So, obviously I did not keep mine.
And so, I spent the first 6 weeks of my summer traveling 5 days a week to have my brain radiated. The treatment itself never hurt. It actually became very routine. It was just a part of my day.
One of the most difficult parts came when I began to lose my hair from the radiation. I never ever thought it would affect me so much. Sitting on my couch, running my hands through my hair and holding clumps of it was overwhelming. I cried – a lot. I needed to get a hair piece, but I hadn’t actually lost enough to need a full wig. When I sat down at the hair piece consult, I absolutely lost it. I could not stop crying. I guess it was one of the first physical signs that demonstrated, “Yes, you are actually a cancer patient.” Frankly, I just didn’t look sick, or what we imagine a cancer patient is supposed to look like. Yet this – this was an unquestionable physical sign that radiation was indeed entering my brain and causing side effects. I was indeed a cancer patient.
Another side effect I wasn’t totally prepared for, despite being told over and over about it, was the fatigue. It didn’t hit me as hard as I know it does some patients. I literally went to my radiation sessions every day by myself on the bus and subway, which people were surprised by. I made sure I walked every day. I attended my PT sessions two to three times a week. However, it took every ounce of my strength, both mentally and physically, to fight that fatigue. Trust me, it isn’t just being tired. It is a full body exhaustion. However, as I was told over and over again, the best way to fight the fatigue was to basically, just fight through it. So, I did.
I also spent a lot of time with friends and family enjoying summer as best I could. I took a LOT of advantage of a friend’s pool. I lounged on the beach as much as possible. I laid out in the sun and read a lot. I made sure I kept up my social life, although I obviously wasn’t frequenting the bars until 1:00 a.m. I mean, for the first time in my life since my teens, I wasn’t working. I was sure as hell going to take advantage of that!!!
So, after those 30 radiation sessions ended, my doctors advised that I would undergo my next scan in approximately a month to 6 weeks later. I am still bitter and angry about this, but they called this my “vacation period.” I wasn’t in treatment, so this was the time to rest and take advantage of my “vacation” from radiation. It’s insulting to call it that.
My next post on the topic of Round 1 of my cancer life will go into the details of this “vacation period.” Needless to say, it was NO vacation!