In the Spring-Summer 2011 issue of the American Brain Tumor Association newsletter, an article caught my attention. Its title was “I may look OK, but I’m not.” Catchy. And inspiring. This post is my attempt at coming to terms with my own experiences.
A very wise person I greatly admire once said that medical information is protected because there’s incredible prejudice against unhealthy people. Then I remember another very wise person I also greatly admire said that personal experiences and accounts help others build empathy so we can all reach common ground and shared understanding. Ok. Not quite lightning-rod revelations. Oh, but, the risks!
Dare I? Here goes…
In the summer of 2007, I began feeling a strange dizziness. I mean really dizzy. By February 2008, my dizziness got so disruptive that it affected my ability to see normally. At first, I had to wait a few seconds each time I moved my head till the dizziness subsided enough for me to carry on. Then the dizzy spells progressed to being triggered by eye movement. It was a hassle. Just imagine driving on a busy street in such a state. Or walking on a tree-lined sidewalk. My stabilizer was busted, but I had other things to worry about, so I did my best to make-do.
A friend of mine who happened to be a general practitioner told me, ever so nicely, that perhaps it was time to see a doctor about my condition. It was probably just benign vertigo. Nothing to worry about.
Seeing the wisdom in this, I saw my primary care provider, who, as my friend predicted, diagnosed me with benign vertigo and sent me off to a physical therapist who specialized in such things. After 3 sessions or so of physical therapy, which momentarily worked, I decided to get a referral to a specialist. The dizzy spells were that annoying. My head felt like one of those liquid motion paperweights that are so amusing to have on your desk. A couple of inconclusive tests later, my ENT decided to order an MRI of my head. He told me not to worry. He didn’t expect to find a tumor. And I was glad he was so persistent.
In late May 2008, I did the graduation walk for my MLIS degree, after 4 years of taking classes, working 2 part-time jobs, and interning on the side. Needless to say, graduation day was a happy day for both me and my long-suffering husband. Not to mention our 2 young daughters. With a distinctly embarrassing moment. As we new grads were filing to walk off the stage, I stumbled and nearly fell face-first onto some stranger’s lap. Luckily I caught myself before I made contact. I remember the sympathies and my mortification. I had been willing myself not to fall, but I nearly did. I remember being thankful that my legs didn’t give out. At least.
A couple of weeks later, I went to my ENT appointment. My doc, normally cheerful, was all seriousness. Then he said it. The MRI scan found a tumor in my brain. I was like, no, he’s got to be joking. Then I remembered that Dr. ENT is a medical professional. He would not joke about things like this. It’s unseemly. I can no longer recall what happened afterwards, how I got from sitting in the exam room to his office and staring at the monitor with my MRI scan displayed. Then to my car, where I gave into hysterics and called my husband and told him the news.
Somehow I made it home from the medical center. And made the call to my employer, saying that I won’t be in for the rest of the day. I had intended to return to work after my doctor visit, but the head spinning and buzzing was just too much. I needed some serious time to think. And to make calls, do some research.
At this point, all my husband and I knew from Dr. ENT was where it was in my head, that it was highly likely to be a slow-growth tumor and non-cancerous. Not cancer. Benign. Good enough. Surgery was likely our best option. But why was it there? How did it get there? What do we do now? What choices do we have? Is surgery really our best option? What happens after surgery? Since the course of treatment is largely dependent on what the heck the thing was, we had to find out. And think and plan for various possible outcomes.
This is already a long story, so I’ll cut to the highlights. I quit my job as a summer intern for a corporate library since I had just started and I knew I was not going to be able to do the work I was supposed to do for the organization. My mind was otherwise occupied and my time much more limited than I had previously planned. Thank goodness my husband was the one carrying our family insurance. I drafted my medical directive, prepared my will, and talked to relatives about future care for my husband and my girls. My husband and I sought a second opinion from within our HMO and sent off my scans and test reports to a well-known clinic for a third. We read as much about epidermoids and ependymomas as we could. We also met with someone who herself had undergone brain surgery, someone we knew from our oldest daughter’s social circle but didn’t know had such a thing happen to her.
I ended up having surgery at my HMO’s closest-to-me hospital in late July 2008. Beforehand, my surgeon warned that we would not know for sure what the outcome will be till after the surgery, if I will end up with impairments in my abilities to walk, talk, or swallow. Radiation therapy might be necessary. None of that happened. But we did our best to be ready for all of it anyway. After 6-8 hours of surgery, a 5+ earthquake during the operation, 5 days in ICU and 3 days in the regular hospital ward, I headed home.
From August to December 2008, I focused on recovery and some mild physical therapy. Some time in December 2008, I felt well enough to apply and interview for a temporary position as a professional librarian at an academic library. I’m still there. Now, I’m a permanent member of the library faculty, currently in my 3rd year of employment.
In a strange way, it feels as if that summer of 2008 happened to someone else and I had simply read or seen the story somewhere else. But my eyes and my ears remind me this isn’t true. But, oh, how lucky I’ve been! No seizures, no radiation therapy, no more drugs. Just the daily morning gagging and occasional MRI scan. And, how could I forget, that hole in my skull that makes my nape feel weird and my vision wonky when I lean against it. So what if I can fail a sobriety test sober. So what? Comparatively speaking, I’ve got it made. And because of all that I’ve read, heard, and seen, I know I’ve got it made.
A sentence in the ABTA article I mentioned earlier rings loudly for me:
“People couldn’t tell anything was different, but I could.”
This single sentence puts many things in great perspective. Its implications go beyond brain tumors.