Cancer at 34 Part 7: My brain is on fire

Until today, my blog has been silent for several weeks and I even stopped writing in my journal. During that time, I struggled with a tremendous sense of ambivalence when nothing interested, inspired or excited me – not even writing. That partly accounts for the silence, but this blog entry is about how dexamethasone set my brain on fire and made it hard to focus on anything besides cleaning.

I’m taking dexamethasone as a precaution against brain swelling due to my tumors and radiation therapy in January 2017. Apparently, I am suffering from some pretty common side effects of the drug, but they still make it difficult to function like a normal person. The dosage is slowly being reduced, but I’ll still be on it for a while and it will take some time for the effects to completely subside.

Most importantly, my brain was constantly firing on all cylinders day and night. This manifested itself in a strong desire to clean and organize all my possessions. I moved around a lot in 2016, and now I live at home again with my parents. A sudden and persistent urge to organize and purge my possessions struck me. It may seem to be a reasonable feeling, because a lot of that stuff has been in boxes in my parents’ basement since I finished graduate school in 2014. In almost three years, I’ve never even opened most of the boxes or used any of the items down there. So it makes some sense to do a little house cleaning now because I’ve got time on my hands, right?

That sounds logical, but I was obsessed with it. The books were stored in nine milk crates, and I sorted, purged, and organized them about three times. I set aside six crates to be sold or donated, and kept three. I tried to pare it down to the books that were most important to me and relevant to my interests. However, it was also very difficult because it felt like I was somehow giving my life away. I also struggled to give up books that I never read (especially if they were gifts or ones I had bought). But in the end, it’s just stuff, and replaceable items that I don’t even use or want any more. But it still felt strange to cut down everything, although it will certainly make it much easier to move out when I finally get my new life going.

Six boxes of history books and textbooks are still available – stop by now before it’s too late!

In addition, I had a modest collection of five boxes of comics that each held about 150 issues. Again, I’d been collecting them for years, and I even carefully put them in bags and boards so that they would be stored properly. In all these years, I’m not sure I ever reread more than a handful of issues. I purged most of them and kept one box that had books I thought were interesting or important (artistically, socially, politically, etc). At the same time, I felt as if I was giving up an essential part of who I am, even though it was just physical media.

Again, to the reader that appears to be productive and it certainly was. However, my poor parents were dragged into this process for four or five days straight. As soon as I ate breakfast, I felt compelled to start organizing my possessions in the basement, and I worked at it for hours. I recruited my parents to help me affirm my decisions, organize items, sort things, and throw it away. I certainly appreciate their help but I was very anxious and irritable during the whole process. I also purged boxes of ephemera as well – movie tickets, concert stubs, beer tasting flyers, etc. How did I accumulate so much crap? On the other hand, it also made me realize how full my life had been up to this point, so it was affirming in some way.

But it didn’t stop. One of the other big side effects of the dexamethasone is difficulty sleeping, and I only get about 2 or 3 hours of sleep a night right now. The rest of the time, I lay in bed thinking about where some item might be, how I could find it, and where I would put it when I located it. Before the urge began to subside, there were still a few missing items that gnawed at my mind and it was difficult to ignore. If I could have gone down in the basement and kept searching at all hours of the night without driving my parents completely insane, then I would have. Since I couldn’t organize my stuff, I sent emails and text messages at all hours of the night (especially to Amanda, sorry!).

Next, I moved on to my bedroom and closet. I sorted and purged clothes for donation that I hadn’t worn in years. I finally unpacked my collection of scale models and put them back on display so that it looks like my bedroom is actually inhabited instead of just room with furniture in it. Originally, I vowed to throw away any models that I deemed inferior, but I relented and kept almost the entire collection. It told a narrative and showed my progress from a beginner to intermediate modeler (don’t believe anyone who says I’m an expert). Again, my parents were recruited as assistants.

A portion of my mediocre scale model collection on display for a limited time!

Now, I still only get a few hours of sleep a night, but I’m taking Ativan which has helped control the fire in my brain a bit. In addition, I’ve been using Kardia, a mindfulness app, available on Android or iPhone to help me focus and control my breathing during the sleepless hours. I usually I stay awake all night but the Kardia app makes it easier to avoid fixating on anything for too long.

Clearly, my parents have been incredibly loving and understanding during this whole thing, especially the peak period of my irritability and anxiety last month. I often voiced and rehashed the same worries and guilts several times a day to them. Being in close quarters all day every day has obviously worn my parents a bit thin. I’m not sleeping well and they aren’t sleeping well either. I often snap at them for no good reason and I feel awful for it. Everyone says it’s not my fault and it’s because of the steroids. But I can’t help but feel like a tremendous asshole who snaps at my loving parents every day for no good reason even when they are just trying to help. I try and make up for it by cooking, cleaning up, or buying a little treat for them, but it feels awful to hurt someone who loves you so much, even for a second.

On top of all this, there is the knowledge that my fight isn’t even all that hard. I’m not doing chemotherapy and I only had one radiation session. I’ve already met people who face much more serious obstacles, so it is hard to accept the fact that my situation is worth complaining about. It’s hard, but, given the circumstances, it’s manageable and I feel worse when I lash out because of that. I just have to ensure that when the dexamethasone is done, I try and hold on to the love I feel right now.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s