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Monday, February 22, 2010

MRI - 2/22/10

Hi everyone . . . thanks for the well wishes. I had my MRI this morning, promptly at 10:15am. I asked to view the images as I came out but was told they were too busy with other patients at the moment to stop everything.

However . . . the MRI tech did a double-take with me -- ("Hey, you're the guy with the symphony who composes, right?") -- but she still wouldn't let me peek at my scan.

However . . . I was able to go straight to the film room and get my personal CD with the images. I drove home quickly and fired up my computer.

However . . . guess what? I suddenly found myself on the wrong side of the Mac/PC debate. The CD works only on Windows with Internet Explorer.

However . . . MJ and I had some side business scheduled with our car dealer whom we know very well. I asked if he had a PC up and running at his desk. "Yes," he said. "Do you mind if I use it for a moment?" I asked. "Sure," he said.

I slid the CD in his computer, on full view in the middle of a car showroom. With some help, I got the program up and running.

Of course, I cannot read the scans as a doctor would, but I have seen enough of them to know what to look for in order to get a general idea. Using the wheel on the mouse, I was able to "spin" through the images, searching for anything that looked suspicious.

I found it, right where it had been before. Not huge, but also not a speck anymore (as it had looked in November). A bright white mass in the area that I think is called the third ventricle.

Also, there were a number of tiny white dots along the top of my brain. I'm not sure what those are, but I wonder if those relate to the constant "tingling" sensation I have on my scalp. It's certainly right in the same area.

I have a call in to my neurosurgeon and am waiting for the call back. I don't know what any of this means or what my next step will be (surgery? chemo? radiation? wait?) until I can get in to talk this over with my surgeon.

Other than that, Mrs. Lincoln, how was the play?

Thursday, February 18, 2010

4 Days to MRI

In four more days I am going in for an MRI that will assess my progress following the excision of my papillary craniopharyngioma via transnasal transsphenoidal hypophysectomy.

(I love doing that. Brain tumors are basically bad, yet they are endlessly entertaining for wordsmiths and cruciverbalists. There I go again.)

The last few days have been okay, but there are a few funny issues I am dealing with on the side. They are:

1) Water retention and weight yo-yo-ing. My body feels like a giant bag of blood with my head attached on top. My extremities look either pure white or blood red. When I stand, my legs balloon up with fluid until they hurt. So last week I started wearing "hospital socks" again, which are designed to encourage circulation. In the next twelve hours I lost seven pounds.

2) Morning headaches, ringing ears, and a tingly scalp that gradually gets better during the day. I've said this before.

3) Slow lips and jaw. I have had this for just the past three days, and only today have I noticed the trend. This is difficult to explain, but my lips and cheeks feel "heavy" in that they don't quite react as fast as I want them to. I don't slur my speech, but there is a millisecond where I have to think, "Okay, make an 'O' sound right now, make a 'T'," etc. etc.. I don't want to overstate this because it is so slight, but when it happens for several days in row I make a note of it.

4) Weird memory issues. Again, this is very slight, but some recent things have given me trouble. For example, our dog Noah is fed at 4pm. That is the time for his dinner, and it always has been this way. Today, I wasn't so sure. I thought it was 3pm, and the time just "looked" right because of the way it appeared on the clock with the hour hand pointing directly right, ninety degrees apart from the minute hand. 4pm just seemed wrong, not . . . correct, somehow. Also, yesterday I couldn't remember the word for the beverage "tea." I described it to MJ as "the hot drink with the bag of leaves and you hold the string" but the simple word "tea" eluded me. Now, both those things are back with me, but unusual moments like that pop up.

Hopefully, the MRI will reveal great news, enabling me to continue my rehabilitation. It is very possible the slow lips are a result of my return to (somewhat) heavy oboe playing and the regimen of getting facial muscles back into shape. And the weird memory issues could be that I am tired from the hormone replacements, plain and simple. I AM NOT FRETTING AND I AM NOT WORRIED.

Regardless, I will have another high-tech peek inside my head on Monday and that will give me a hint of where I get to go next.

Friday, February 12, 2010

Hearing Test

Yesterday I met with my ENT (Ear, Nose and Throat) surgeon because my mornings continue to be difficult. I have resorted to using ice again. I have "pressure" headaches in the morning along with bouts of dizziness and ears which ring constantly. It's mostly the left ear, but sometimes the right ear will ring loudly as well. By "ring" I am generally referring to a high pitch, like a very high harmonic on a violin or a dog whistle. I have never experienced anything like this.

The composer Ligeti often uses high tone clusters which produce the sonic effect known as a "difference tone." Sometimes, my left ear will begin on one pitch and my right ear will join a micro-tone lower. I swear I can feel the third, ghost-like difference tone humming in the middle of my chest. I am a flesh-and-blood Ligeti composition, playing on endlessly. It can be fun, but I can't stop it. It is starting to drive me insane.

This is why I decided to visit with the ENT. He knows me personally and he knows my case because he performed the "outer" half of both my neurosurgeries. I wanted some basic hearing tests done because I have never been tested in my life. If I am losing my hearing that would explain a lot of the high pitches.

But I am not. My hearing is perfect. Not "normal," mind you. I mean seriously PERFECT. I aced every test without the slightest abnormality. This is great news about my hearing (and great news for my woodwind section). But it also means something else is causing the ringing.

My eyesight is perfect. My hearing is perfect. My pectoral muscles are getting there. But something still isn't right in my head and something still doesn't add up. So I went to the next step and called the office of my neurosurgeon. I have an MRI scheduled for March 1, but I wanted to see if I could move the date up.

I was told my surgeon is out of the country next week, so it was rescheduled for February 22. Specifically, I was informed my surgeon told the office he "doesn't want me to see my MRI and then have to wait a week to discuss the results." There are a lot of ways to interpret that, but I can understand. A week of wondering why the center of my scan looks like a drop of egg nog is probably not a good thing for my blood pressure. I can wait, I can wait, I can wait, and I can make jokes about it in the meantime.

Even though my mornings can be scary, if I rest all day I can still play my oboe in the evenings. This week we are in the opera pit playing Leoncavallo's "Pagliacci." In that story, a clown knows how to make others laugh but hides a torrent of emotions under all the funny makeup.

Tuesday, February 2, 2010

Neuro Ophthalmologist

Today I had an important follow-up test with the neuro ophthalmologist. He is the man who originally ordered the MRI that found the tumor in September. It was about two hours of tests, very thorough. Lots of eye drops, lots of clicking on a remote, lots of bright lights.

At the end, the neuro ophthalmologist came back in the room. He grinned.

“Your vision is practically normal. All signs confirm your tumor is gone.”

“Great!” I said.

“Congratulations, you beat it!”

He offered his hand to shake.

I took it.

I was going to say thank you, but in all honesty my voice cracked.

It was a sweet moment, one of the sweetest of my life. There are moments when two men are alone where it is okay to weep. The last time this happened was in 1989 when it was me in the audience and Kevin Costner on the screen in “Field of Dreams.” That was a sweet moment too.

I gathered up my coat to leave, relieved. I said, “It’s been great knowing you. Which way out?”

He motioned me back into my chair and cleared his throat. “Your tumor probably will grow back.”


As a matter of fact, my brother tirelessly researched my condition in the days before surgery, and I knew this was an eventuality but had forgotten. Yet—regardless of what I knew—there was only one path everyone agreed upon in the beginning. Brain surgery. Get it out. Recover. Then look at your options. Here we are now.

“How long until it returns?” I asked.

He said, “No one thought yours would balloon back just two weeks after the first surgery. That was a record!”

I wondered who won big in the office pool.

“Everyone is different,” he concluded.

“How long?”

He went on to tell me, in so many words, he didn’t know. No one could know.

In a few weeks, I will have an MRI to take a peek at how things are progressing. We are currently tracking a speck. If everything looks about the same, I’ll have more vision tests and another MRI a few months after that. Then a few months later I’ll have it all again. Then again.

I have many concerned eyes on me now, tracking every little bit, for the rest of my life.

And now I have what is called a “pre-existing condition.”