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.