Before you read my novel of the Tumor, here are some links for you to check out if you would like to know more about acoustic neuromas, and brain disorders in general:
  • Brain Connections Online: Pointers to organizations that provide info on brain disorders.
  • Massachusetts General Hospital Neurology: A good starting point
  • HospitalWeb:Information on any hospital on the Web
  • A Window on my Mind: Poetry and Neurological Disorders. (currently offline)
  • Crohn's/Colitis Home page: Let's not forget this lovely'll see why I included it, soon enough.

  • The Process

    I caught a cold. Just an ordinary cold, that developed into a sinus infection. I started having dizziness that wouldn't go away. I went to one of those urgent care centers, and the doctor there told me that I was having dizziness, here take this medicine (dramamine). So I did, and nothing changed. It was January of 1994. Two years out of college, and too broke to afford a real doctor.

    You know that story, wherein if you take a frog and drop it into boiling water, it'll just jump out, but if you put it in cold water and gradually turn up the heat, it'll adapt until it is dead? Well, that was me. I just dealt with the dizziness...then, when I started a new, full-time job in July, I started getting headaches. I accepted the discomforts and attributed them to stress. New job, see?

    The headaches were getting worse, but I still had no health insurance, and wouldn't until January. Meanwhile, I started having blood show up in my shit. Yes, shit. "Bowel movement." There IS no polite way to put it. (See the shit list for some scatalogical humor, compliments of hordes of UC sufferers).And all sorts of painful gut symptoms showed up, that I won't get into here. Maybe if I feel like it, I'll do an UC page. So when my insurance started, WHAM I went to the doctor, and was diagnosed with Ulcerative Colitis. Yuck. Basically my entire lower digestive tract was one giant bleeding ulcer. Not fun.
    (Personally I think it was caused by all the Advil I was taking for the constant headaches.)

    I was put on Prednisone, a drug with its uses, but lots of nasty side effects, to try to stop the bleeding. And the headaches were getting much worse, as was my concentration, and my balance. Finally, after several "performance discussions" during which my "boss" showed no sympathy for my medical situation, my resignation was "requested" effective in four weeks: on April 10.

    I ended up calling in sick several for several of those days, then was laid out flat on my back with the most debilitating headache I have ever had. I threw up 6 times, I couldn't see, couldn't think, couldn't hear. My then SO Billy-Bob* took me to the emergency room at Evanston Hospital. There, they said, "Oh it's just a migraine," gave me some nausea medicine and sent me home. I called my regular doctor the next day, but she was out of town.

    I got in to see one of her associates who said "Oh, you had a migraine," and gave me some of the most common migraine medicine and sent me home. Where am I going with this?
    It gets better. That was on a Thursday, so no problem until Saturday (my friend Alice should remember this Saturday because it was Girrrls Lunch and we went to Pier One afterwards) It was about 3:00 in the afternoon and the migraine started to come back. I took the medicine but it didn't help, and Alice had to drive my car home for me, with me in the back seat. So the weekend was Hell, I had the headache the entire time, and we called my regular doctor on Monday morning, and she said for us to go to the emergency room for a CAT scan (Apparently that was the only way to get in for a CAT scan there since they always needed it for incoming trauma patients).

    So we go to the emergency room at about 11 o clock, and we're (Billy-Bob took me) there for over 8 hours because there had been a record number of car accidents that morning. And of course I was migraining still. Billy-Bob ended up getting a cold from being there all day. They finally do the CAT scan and we're left to cool our heels in one of the emergency room beds for even longer while we wait for the neurosurgeons to come and talk to us.

    My regular doctor, Dr. Diane Bronstein (the best doctor I had ever had--if it wasn't for her it would have taken much longer to figure out what was wrong) came to see me and told me point-blank what was going on. "The CAT scan showed a lesion in your brain. Has anyone talked to you about it?"

    When I said no, she went on to explain that she hadn't expected to find anything and had also scheduled a spinal tap to look for infection in my brain, due to the Prednisone (one of those lovely side effects I mentioned earlier). Obviously since the CAT scan had turned something up, there was no need for the "Lumbar Puncture" (spinal tap). When the neurologists showed up, they explained that I had a tumor and they were going to admit me for a few days, but that it definitely had to come out or it would continue to press on my brain stem ( the reason for the headaches) and would eventually (within a matter of months, actually) become fatal.

    I was in the hospital for a couple of days, and surgery was scheduled in two weeks from my entrance, for May 8. I was put on major steroids (Decadron--more about that later) and sent home with the warning that if anything odd happened to call right away. Well, first thing I had a reaction to the steroids, and swelled up with joints screaming. I called the resident neurosurgeon and he said it was normal, and somehow he forgot that this was a real person in pain here and not just some journal of medicine, so I called my doctor and she wrote me a prescription for Lasix, which is a water pill. Whee.

    *Not his real name


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