Five years ago -- reality sets in

The following morning, I awoke in a bed at United Hospital. I'd been given some pain medication to help manage what was now a lower-grade but consistent headache. Before I'd been able to get a little sleep, I'd been awake for about 36 straight hours, between the onset of the headache and the wait for an MRI. Mrs. D had gone home to take care of the kids, but now it was morning and they were back at school, so she had returned to the hospital, where she would stay with me until the evening. My in-laws were now aware of the situation and were able to help out with the kids.

Modern medicine can perform amazing feats, but it rides on an raging river of  paperwork and tests. All day long it seemed like an endless parade of nurses with needles arriving for various endocrinology baseline tests. I would be pushed all over the hospital and to the medical office building adjoining the hospital for various visits with doctors, nurses and paperwork. Our health insurance card was getting photocopied so much that it seemed like it would begin glowing.

Then came another test. I was wheeled over to the opthamologist's office across the street, with various elevator trips and cruises through the tunnel system connecting the buildings. This test was an important one, because it would be a thorough evaluation of my formal visual fields.

The young opthamologist put me in a chair and placed my chin on a support, with a brace holding my forehead in place. In front of me was a grayish panel with tiny diodes that would flash lights in random places. I had to click the button I held in my hand each time I saw a light.

It was difficult to see the lights in any event, as I couldn't wear my glasses, but I gave it a go. I went through a battery of tests. After I was done, the opthamologist shared the results.

"Here's what you need to know -- it's evident that the adenoma is causing pressure on your optic nerve and it's affecting your vision. You probably don't realize it, but you have lost about 30% of your vision."

I was stunned. I hadn't noticed it, since the change happened gradually as the tumor had grown. There are two ways to explain what had happened. The easiest way to explain it is this:  my vision was like what you see when you watch a letter-boxed widescreen movie on an old television with the 4:3 aspect ratio. The image you see is narrow and there are black boxes at the top and the bottom of the screen. The difference is that in a letterbox, you do see the complete image; it is just compressed.

Another, better way to explain what I was, and was not, seeing is this: if you've ever seen a game at Wrigley Field and had seats in the back of the lower grandstand, your view of the field is obstructed by the upper deck, which cuts off the sky. You can see the infield and the outfield, but you can't track the flight of the ball on a popup, because the upper deck obstructs your view. In essence, my vision was gone above and below where the obstruction was. He showed the test readout. I had missed every flash above and below a line.

As you can imagine, this was distressing. I asked if the vision loss was permanent. The news was, well, guardedly optimistic. "If the surgery does what it should do, you should be able to regain your normal vision, but it's not guaranteed."

But there was another factor to consider. Because of my vision loss, I was no longer allowed to drive a car. While this would not be a problem while I was in the hospital, it would be a major problem in other ways.

Later that day we met again with the neurosurgeon to discuss the timing and action for the surgery. Given the schedules involved and the time it would take to get the insurance company to figure things out, surgery would likely have to wait for a week. I would remain in the hospital for further observation and testing for another day or two and would then return the following week for the surgery itself. I'd be sent home with medication to control pain, but other than that it was time to wait.

Next:  the circumstances of life while awaiting brain surgery.