As MJ, Noah and I enjoy a quiet Thanksgiving alone (I am too unstable for anything else this year) I take solace in the healing power of writing, knowing that my loved ones will be reading my intimate thoughts (as random as they come). It just feels good to write.
I am noticing my rehab from the second brain surgery is different from the first. The first rehab—and now I am sure of this—gave me an almost clarvoyant ability to see into my past. I had an uncontrollable urge to write very old memories down. I feared if my fleeting thoughts were not captured in words I would never know certain things again. Memories were escaping my head and I had to snatch them out of the air like fireflies.
This time I feel more measured about things. Having been through the second (more painful) surgery followed by a step down in hospital care, I am pacing myself, conserving energy. I think more within my own head but I still have the desire to write and communicate to others. My cautious intuition tells me a third surgery could be around the corner, possibly very soon. My tumor is as rare as they come, and there is little explanation for anything that has happened so far. I can’t believe I am preparing for the possibility of going under the knife again, but somehow my body “knows” this is going to happen despite the complete removal of the tumor. I can just feel things happening in my head and something is not right.
My vision did return following the second surgery. (For those of you new to this blog, the tumor was expanding between my two optical nerves, beginning to blind me and causing massive headaches.) But yesterday I tried some basic vision tests, judging light and color saturation. My left eye (the problem eye both times) is now underperforming again by 10-15%, as best as I can tell. Two days ago, it was underperforming 5-10%. Things are getting worse. There could be an explanation, though. I have been somewhat active and maybe that is the reason. But all I can do is spend time on the couch and rest. I hope this small setback is simply a blip.
The other frustrating thing is my pituitary gland. It had been squished (and then re-squished) by the tumor. In layman’s terms, my gland is now going beserk. I have already consulted an endocrinologist (with more tests to come), but for now I am battling diabetes insipidus. I have massive fluid losses and fluid gains as my body seeks the correct balance of sodium and potassium. I have a hormone-replacement nasal spray that corrects this, but I am still tinkering with the dosage.
My pituitary gland also controls testosterone production, and prior to my first surgery my testosterone measured at one-eighth the level of a normal male. Currently, as my gland figures out what to do, my body is changing in a way I have not felt since puberty. I am forty-one but nothing feels stable. It drives me C.R.A.Z.Y. I have severe hot flashes (intense sweating) followed by bouts of bitter freezing. I am constantly adjusting to keep myself at a medium temperature, like I am balancing on the middle of a see-saw. I try taking off one sock, unzipping my sweatshirt halfway or pulling up one sleeve to my elbow. Tweaking, tweaking and tweaking. If I get it wrong the hot flashes stay for minutes that feel eternal. These are followed by deep, teeth-chattering freezes a moment later. You can find lots of information online about hot flashes in women, but the information about men is thin. I read this morning that hot flashes occur if men have extremely low testosterone or have recently been castrated.
The headaches come and go with similar intensity. Sometimes lifting my eyebrows causes a searing pain deep behind my eyes and then a shooting sensation down the back of my neck. I have a few days left of standard pain pills that help a little, but after that I don’t know what my options will be. I cry openly. Sometimes tears stream out of me for no reason at all. I am a mess, but I have MJ and Noah with me to clean up the mess. Yesterday in particular was unbearable, and at one point MJ just held me to warm me up during a cold flash. Noah wanted to help too, so he nudged his giant head between us and licked me over and over.
All my life I have seen humor in things, and this is no exception. Quite seriously, I find my predicament hilarious. I can envision an HBO sitcom about my ups and downs following brain surgery. (But who would play me? Daniel Craig would be the obvious choice, but he would have to buff up for the role.)
The first time I felt different things in my body we were living in Caracas in the late 1970s. I was eleven. Our house—like most houses in our neighborhood—was a virtual fortress. Iron grates were bolted to every window. Exterior doors were solid steel with double locks. The one time my mother forgot to lock her car in our driveway someone tried to steal it. We were allowed to ride our bikes outside and we had a small backyard with mango and banana trees, but for the most part we stayed indoors. For long stretches, especially in the summers, we had nothing but books and our imaginations.
To back up a bit, there was a vibrant community of ex-pats in Venezuela, and we were able to construct a social life with a familiar ring. We had many American friends and we visited other houses regularly. On certain days we spent afternoons at a country club where many of the people were American. We went to a school where the majority of the children (and the teachers) were American. But the standard entertainment we take for granted today was limited. We had a television set, but the only live TV I remember watching for two years was “Space: 1999” dubbed in Spanish.
Then one day my father brought home a Betamax and everything changed.
One enterprising young man came up with a system where he would tape TV shows and movies in America and circulate them amongst famlies with Betamaxes, charging us a small fee. Every week he would deliver four new tapes and collect the four tapes from the previous week. It was, in essence, a crude Netflix for ex-pats. You never knew what you were going to get. Episodes of “Laverne & Shirley,” the mini-series “Roots” or a pirated movie. It was not perfect, but it simulated American family entertainment inside our iron fortress.
All this time I knew I was growing up, too. My body was changing in ways I can relate to today. I began assessing the girls in my class. One day we climbed the mountain outside Caracas called the Avila with another American family, and I felt strange bursts of energy. At the top of the mountain the exhausted adults took naps and I continued to explore with the other kids. The family we were with was in the rotation of Betamax tapes, and we received tapes they had watched the week before. Once we were a safe distance from the adults, the oldest of their sons informed me about a movie we would be getting next called “Marathon Man” starring Dustin Hoffman.
“Be sure to watch that one,” he informed me. “It has a nude scene.”
I had heard about nude scenes from other kids at school, but I had never seen one. In this day and age a growing child has endless options for placating his or her curiosity about salacious subjects. But before the Internet, before DVDs, before VHS, before Betamax (and if you father and none of your friend’s fathers had certain magazine subscriptions stashed) you were officially out of options.
When my family sat down in front of the TV after dinner the next week, we looked over the four new tapes that had just been delivered to our house.
“What should we watch?” my mother asked.
I made an impassioned plea for “Marathon Man.” My family agreed and I snagged the chair closest to the TV, explaining that I needed it because my eyes hurt. The tape went into the machine. My father pressed PLAY. The movie started.
I watched intently. There was a car crash at the beginning, something about an old Nazi. Then Dustin Hoffman was jogging. Then Roy Scheider was in it. Finally, Dustin Hoffman met a woman. After some scenes with an older actor (Laurence Olivier, I later found out), there was a part where the camera followed trails of clothes strewn across the floor until it came to Dustin Hoffman kissing the woman on a bed. He stopped kissing her and rolled to his side.
There she was.
I froze. No one in my family said anything. I didn’t breathe. I watched the screen while Dustin Hoffman and the woman talked. I pretended like it was just anything else. Then the scene was over. I watched the rest of the movie, hoping there would be something similar, but that was it besides the infamous later scene that scared a generation away from dentists. I secretly returned to our Betamax many more times that week, soundlessly watching the scene and discreetly putting the tape back on the shelf. I wasn’t sure why I was doing this, but something inside me compelled. I was eleven and—just like myself today—the inside of my body was a war zone as my hormones rebalanced, trying to figure out what I was to become.