In my last post, So, you’re going to radiate my brain????, I talked about my 6 weeks of radiation. As I described, radiation had become part of my regular, daily routine, as odd as that may sound. Following the end of my 30 radiation sessions, my doctors dubbed the time until my next scan my “vacation period.” Seriously?
There’s power in the words you choose, especially when it comes to cancer. To call that time “vacation” is just simply wrong. That term should never, ever be used. So obviously, the period between the end of radiation until my next scan was by no stretch of the imagination, a “vacation.”
First, I lost that daily routine. I was left all on my own to find something else to do, day in and day out, to occupy my time. From leaving my home to arriving back after radiation, I was out of the apartment for hours. I wasn’t sitting around, pondering my own thoughts. If there’s one thing that keeps you out of your head, it’s following a routine!
With the lack of that routine, things became VERY dark. Frankly, this was the first time I truly felt the weight of what I had just gone through. The “fight or flight” mentality had weakened. I found myself sitting on my couch, hysterically crying, asking, “What the hell just happened to me?” It never got to the point of, “Why me?” although that’s a perfectly understandable, common response. However, it was the first time I truly thought about death.
My husband, my family, my friends – they had careers. They worked all day. I didn’t have any fellow cancer patients to turn to. I felt completely and utterly alone, left with my own frightening thoughts. Again, to call this a “vacation” makes me sick.
It’s a strange phenomena to me that the end of treatment was worse than undergoing the treatment itself. I’ve heard both sides of this – some patients see treatment as horrific and ending treatment a true relief. However, I’ve also met many survivors who felt just like me. Again, each and every person is different, just as each and every cancer is different. There is absolutely no judgment in either experience or opinion.
Another frightening aspect of this “vacation” was the lack of contact with medical staff. Sure, my doctors were a phone call away. Yet, going back and forth to the hospital for 6 straight weeks meant there was always someone physically there to monitor me. If I had an issue, or a question, it could be handled right there and then.
There was a specific incident I remember during that “vacation” when I came down with a simple, routine cold. I convinced myself it was so much more. I was sure the tumor was back and it was affecting my whole body. I also feared that every little twitch in my left leg was an oncoming seizure. My oncologist’s nurse had to practically talk me off the ledge. Yet, she understood what was going on. It wasn’t the first time a patient had called believing the most minor thing was the end of the world.
And so, I truly mentally, emotionally suffered those 6 weeks. It also didn’t help that leading up to the next scan, my first bought of “scanxiety” hit. For any cancer patient out there, I would safely bet, you’ve experienced this. For anyone who isn’t familiar with the experience, it is basically an overwhelming fear/anxiety/stress leading up to the results of a scan. Many compare the symptoms to post-traumatic stress disorder (PTSD). Uh, I can relate and wholeheartedly agree. (As an aside, with no medical training whatsoever, I believe that the entire cancer diagnosis and what trauma follows brings about PTSD).
My immediate post-op MRI had shown that the surgery was a success and there had been a total resection of the tumor. Yet, there was always that chance that there were cancerous cells still there, lurking around that no one could see just yet. So, this next MRI was the first since my surgery.
The thoughts that consumed me: Would the scan show the tumor had already grown back? Had the radiation worked? Was there serious swelling on my brain caused from the radiation? Could there be any visible side effects from the radiation? Although, I didn’t even really know if that was possible… Was I going to have to undergo another surgery? This time, would they decide I’d need to start chemo? Worse off, would they tell me that none of the treatment had worked and we simply had no other options?
At that point, I didn’t know about scanxiety. I had never met or talked to a fellow patient/survivor, especially one my age. I thought I was alone in this feeling. Was I going crazy? In fact, although I’m sitting here writing about it, I actually have a difficult time putting into words just how consuming and terrifying these thoughts were. It actually felt like I was carrying a ton of bricks on my shoulders. And worse off, no one around me truly understood, although of course they were sympathetic and tried to understand.
So, the time finally came where I underwent that first post-radiation MRI. I don’t believe at that point I had been introduced to the magic of anti-anxiety medication. So, as far as I can remember, I went into that MRI cold… nothing in my system to ease the fear of: 1.) going into that MRI tube, again; and 2.) the pure, raw fear of what that MRI could possibly show. P.S. I have never ever once opened my eyes while in the tube, despite the countless MRIs over the last 2 years.
Luckily, the way my appointment worked, and still works to this day, I met with my oncologist just hours after my MRI. So, I would know the results that day and then. And that is the topic of my next post.
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!