The Story of a Tumor: Diagnosis (pt. 1 of 5)

It all began after the office Christmas party. That night it was cold and windy out, but clear. The party was alright, but I went home fairly early since I’ve never been a fan of most parties. The only time I like parties is when I have a lot in common with the people there, and frankly the only thing I have in common with most of my co-workers is that we’re co-workers. Thus, at that very moment, I found myself on the road driving home. At home, I had a cat and an empty bed waiting on me; my fiancee was out on a job in Alexandria (she’s an archaeologist), and was due to come back the next day. I was also looking forward to a few hours of World of Warcraft, and maybe The Daily Show with Jon Stewart, then bed.

I was first in line at the intersection, so as soon as the light turned green I hit the gas. Right as I did, the world went black. I didn’t black out, the lights were still on, but I was blind. After a few seconds of ‘oh shit what’s happening’ I realized that if I didn’t get to a safe space, I was going to swiftly die in a car wreck. I took my foot off the gas, coasted to the other side of the intersection, and felt for the emergency lights on the steering column. They were right where they always are, which is I suppose kind of the point. Eight or ten extraordinarily long seconds later, my sight started to return to me. It cleared kind of the same way the windshield clears when the defrost comes on; it started at one or two different points and worked outward. When it came back, I sped up and drove the block and a half back to my house. I parked, went into my bedroom, and completely freaked out. My hands shook, my heart raced, my breath came in short fits, and I felt like my heart was going to come fling out of my chest. After I calmed myself down, I made a few calls. First I called my fiancee, to tell her what happened. Then I called my brother, to ask for advice.

Two days earlier, the same thing happened to me. As I was standing up out of bed in the morning, I lost my sight for eight or ten seconds. I wasn’t sure of the extent because it was also quite dark, but that it happened twice was enough for me to say it wasn’t just a freak occurrence.

The call came just as he was sitting down for dinner, I think. His daughter (my niece) was in the background, as was his wife and her sister. Her brothers were there as well somewhere. Calling him for medical advice is something I try to avoid, because everyone in our family does it and it drives him nuts. They all think that having a doctor in the family means they have access to free health care, and I hate to treat him like a thing to be used rather than a person whose company I enjoy thoroughly – because I do think he’s absolutely awesome. I took a deep breath and asked him if he had a minute. He sensed my tone, and said he did. I described the situation to him tersely, as he’s probably used to hearing from patients, and asked him what I should do. In the back of my head, I was hoping both that this was and wasn’t a simple problem, because I hated to disturb him for nothing. I’m sure he was fighting back some very real fear himself when he set me up for an appointment with his wife’s sister, who is an optometrist with a practice in town. He told me later that what was eventually diagnosed was the most likely diagnosis given my symptoms, so his training told him that’s what it probably was from the very start. I was to go to the appointment immediately in the morning.

My fiancee got home the following morning, just in time to be there with me for my appointment. That morning it was also cold, but the sky was bright blue and cloudless. I went into the Walmart Vision Center, asked for my brother’s sister-in-law, and was shown to the back. She looked me over, assessed my vision, and determined that my blind spot was approximately three times the normal size. That caused her to look at the back of my eyes to assess why that was the case. She saw a swelling in my optic nerve, and sent me to the hospital across the street for an MRI as soon as possible. She also called my brother to update him. Afterward, he called me and said he was on his way and would be there in an hour or two. That was my first sign that this was probably not a quick fix, or something small. My brother is, among other things, a busy man. In the past three years, I’ve never had a phone conversation with him longer than five minutes that he did not end because he got another call or had urgent business to attend to. It’s the life he leads, and as much as it upsets me sometimes I accept it because in so doing he is helping many other desperate people. My wants are trumped by their needs. That he would drop everything to come here, now, meant there was a need. It meant he was scared I might die, even if he never said it.

The glass doors of the hospital ER slid open, and I walked into the rather cavernous waiting area. The room was arranged in a somewhat twisting, irregular shape like an obtuse Tetris piece, bordered by about a dozen windows at which sat a dozen secretaries, waiting to take information and give assistance. On one side was a rather unobtrusive, beige door marked “Authorized personnel only” through which the nurses came to admit patients. I took a number and waited. While I was waiting, my mom called me.

My brother had called her and filled her in on my condition. She was scared, and it showed. Her voice was shaking as she asked me how I was, what I needed, what I thought and how I felt. I told her that I was holding my feelings in check at that moment, because there wasn’t a solid diagnosis yet and it wasn’t helpful to be scared of shadows. I told her that I hoped that everything would be alright, but that I would know for sure in a couple of hours. In there somewhere, she asked for a recounting of the past few days. I gave her that recounting, then told her that I opted not to tell her sooner because I wanted to know whether or not it was worth worrying about before I did. That my brother called her just confirmed for me again that he was scared, and that he thought it was probably worth worrying about.

After about an hour, a nurse I don’t remember well called my name. She recorded my height and weight, measured my blood pressure and pulse, and then showed me back to another room in which I sat for about ten minutes. The room was the same as any room in which you wait to be seen by a doctor – about the size of a large bathroom, painted beige with a raised bed in the center and a few seats around the edges. There was a container for needles on one side, a box of latex gloves, and a few posters on the wall about gastroenterological disorders like ulcers and acid reflux. He came in, asked me to recount my symptoms and the steps I’d taken up to that point, and I did. He nodded, and wrote an order for an immediate MRI of my head, with contrast. Afterward, he explained that it could be several things, and that an MRI would help him diagnose it more solidly, without recounting what he suspected it was. I suspect that he had a (legitimate, given his job)  concern that I would sue for malpractice is he said what he suspected and turned out to be wrong, and so avoided sharing his opinion.

By the time fifteen more minutes passed and it was time for my MRI, it was also past noon and had warmed up a bit. I noticed that when they led me into a trailer outside for my MRI, which I figured was housed outside because it probably rather heavily disrupted any electronics that were too near it. They hooked me up to an intravenous bag of contrast dye to help them differentiate between certain tissues in my body, and I went into the MRI. After 45 minutes of banging, clanking, clicking, buzzing, and clunking, the stretcher slid out and they released my head from the immobilizer. I had meditated the time away, so it seemed like next to no time at all. The only effect I felt from the MRI was a powerful craving for nachos.

The nurse showed me back to the room, to wait for the results to be read by a radiologist and a diagnosis to be made. While I was in the MRI, my brother had arrived. We hugged, caught up, and were joking around a little bit when the doctor came in. When that door opened, his smile disappeared and his demeanor shifted to all business. That was the same expression the doctor had, except his was a little more grim.

“We got the results of your MRI back from the radiologist, and there is a tumor about the size of a golf ball on your acoustic nerve, in your brain.” he said.

I asked him to explain it in more detail. Exactly where (the Pons) it was, what type of tumor (a schwannoma) it was, and what my prognosis was. He told me that this was very serious, and he was going to schedule surgery at their main hospital in New Orleans as soon as possible. I nodded, accepted that information, and considered the ramifications of what that meant and what I needed to do next.

“You’re not really reacting. Do you understand that this is a very serious diagnosis?” was the next thing he said, that I remembered. I told him that I did understand that, but that I figured it would do no one any good for me to have too great an emotional reaction right now. There would be time for that later. Inside, I was reeling. I don’t even know where to begin when describing my reaction. I was scared, angry, upset, sad… I was lots of things, but damnit even though I couldn’t control this I could control me, my choices, and how I reacted. How I reacted would also either help or hurt those I cared about, and the last thing I wanted was to hurt them.

The reason I lost my vision is that the tumor was large enough to block the free flow of fluid from around my brain, especially its drainage. That build-up of fluid caused my optic nerve to get squeezed and to swell. So, as a temporary fix they gave me steroids to reduce the swelling and get me ready for surgery. The doctor gave me a few prescriptions to take prior to surgery – a steroid (Prednisone) and an antibiotic. One side effect that my brother told me to expect was that I would get absolutely ravenous, which I was already. I hadn’t had more than a bowl of cereal to eat that morning, and it was past time for lunch. I still craved nachos.

My brother called my mother and my father, and let them know what happened. After that, we made ready to go to New Orleans the following Tuesday, for the pre-surgical examinations and appointments. My mother and father made plans to come to town immediately. Then, I had lunch. My brother had enchiladas, my fiancee had a burrito, and I had nachos. I also ate half of my fiancee’s meal, and half of my brother’s meal. Like I said, I was ravenous. He left town to take care of business back home, and I went home myself to make ready for the trip.

When I got home, the first thing I did was google a few things. The first was “Living Will.” Under no circumstances, did I want to be a vegetable. The next was “Power of Attorney.” More than anyone else, I trusted my fiancee to make my living will happen, with my brother the next in line. The final one was “Last Will and Testament.” I knew where I wanted the few things I owned to go, so filling out that template was rather easy. While I was doing that, I had a moment to laugh at the injustice of the situation I was in. Not even 30, and I was looking those things up. Not even 30, and I had to face a diagnosis that most people don’t face until they are at least twice that age. What an overachiever I was.

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