Monday, October 17, 2011


I never really intended to live so close to my parents.  It happened naturally, as a result of consequences and work.  After I graduated from university I moved back home so I could accumulate some savings, with which I could put a nice down payment on my own place.  They charged me some rent but it was nothing outrageous; less than I now pay in association fees on a monthly basis.  Once I had saved enough to purchase a condo I found one that was affordable and very close to my job (about 10 minutes away), and nice enough to be called an investment.  That put me about 40 minutes away from my parents, which is one of the reasons they were able to provide logistical support through this ordeal. 

Once we had a date for the surgery, we worked out a plan for my recovery.  We agreed that it would probably be best that I not be on my own for a while, and even though things turned out much better than expected, I was not quite out of the danger zone yet.  My father is an EMT with the local fire department, which meant he knew the procedure for caring for a patient such as myself or responding to an emergency.

I had to keep to a tight schedule at first.  A handful of pills, to be taken at four points during the day, though later that would become three, then two, and now only one as I was slowly weaned off my medications.  Decadron (steroids) for the swelling (which, I must admit, gave me much more energy than I was used to).  Bactrin (antibiotic) to strengthen my immune system, which suffered due to the steroids.  Zofran, for the nausea (due to steroids and the whole "brain surgery" thing).  Two different flavors of stool softeners, as they didn't want me straining at anything; the floor of the resection was susceptible to hemorrhage early on (and I swear I'd never been so regular in my life).  Wellbutrin for my depression, which I'd been taking for years and we decided that maybe we ought to wait a while before tweaking any long-term meds.  Levothyroxin for my thyroid.  I also had plenty of Tylenol on hand but never needed it.

The nights were difficult at first.  I was keeping more regular hours than I ever had in my life - my therapist said I've been borderline sleep deprived for years - so waking up around 8 or 9 AM and actually feeling refreshed was new to me.  I still woke up frequently during the night, mostly to go to the bathroom as I was required to keep my fluid intake as high as possible.  My body had trouble regulating its temperature.  I kept the AC turned on but sometimes I would start to feel remarkably cold, and cover up with a blanket.  Then I'd wake up an hour or two later, drenched in sweat.  Over time, the variations became less severe and eventually vanished entirely.

It was kind of nice, staying with my parents.  My meals were prepared for me, and my only job was to relax and heal.  I had to take things extremely slow, of course.  When standing I needed to brace myself with my hands until I was sure I had my balance.  I was still too weak and unstable to move very quickly, but still had to exercise for fear of clotting.  I still couldn't bend over, or put any sort of pressure on my head.  There was a whole list of foods I couldn't eat. 

I also found that I liked mushrooms.  I was never really all that fond of them, possibly due to a bad mushroom experience as a child, but I tried a few on a whim and took a liking to them.  I'm inclined to believe that was more a matter of me giving them a shot than having lost my dislike of mushrooms through surgical intervention.  I would not recommend any parent try brain surgery as a way to get their child to eat their veggies.

Before long I started to cook for myself again, in part to make sure I still knew how and in part because my mother had other things she'd rather be doing.  I needed help showering at first because I couldn't get my suture wet, but they had a bench for me so I didn't have to stand, I handled everything else myself and gradually I worked up to showering alone, standing.  My first post-surgical shave felt like being reborn; I used to have a goatie but had long gone clean shaven due to the itchiness of a beard, paired with a related bout of facial trichotillomania

Over time I started to regain my strength, even as I stopped taking the steroids.  My gait became stronger and steadier, and finally returned to normal.  That chronic cough I had started to fade.  Many of my visual symptoms continued to improve, though it was clear that my brain was still rewiring itself, occasionally leading to a new (albeit brief) symptom, such as a numbness on the top of my right wrist, or on the lower tips of the two last fingers on my left hand.  I still had to watch for dizziness and it seemed all the progress from my recent eye exercises had been undone as I was again seeing double, though this too is a common symptom of brain surgery, and improved gradually.  About a week after my surgery I played a game of Left 4 Dead 2 and quickly determined I was not ready for something quite that intense. 

During that first week I started to communicate more, sending out updates to friends and family, asking about the outside world.  I didn't stress over work, or much of anything, really.  It was actually quite relaxing, and not a bad vacation. 

Might have been nicer without the whole brain cancer thing, but these days I take what I can get.

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