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?

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.

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.

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.”

“What?”

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.”

First Regular Week of Playing

I am on the couch again for the day, horizontal and resting, by executive command from Nurse MJ. This week I returned to work in a regular subscription concert, playing principal oboe for Richard Einhorn’s “Voices of Light” which accompanies the 1928 silent film “La Passion de Jeanne d’Arc.” I have played two of these concerts, and there is one more tonight. Returning on this particular piece has special meaning because eleven years ago I suffered a hernia injury and had to withdraw from the same concert. The years in between have been a test—six years of chronic pain followed by a second hernia surgery followed by cough-variant asthma, and now this tumor business with two trips inside my head to scrape it out. Everything seems designed to derail my dreams of continuing my life on stage, but—with a little help—I have found a way to persevere. The past eleven years have been wrought with physical issues, but I don’t complain because they have also been the happiest years of my life.

Here is a summary of my return this past week:

TUESDAY – An hour into the first rehearsal, blood came out my nose. I left the stage, called my doctor, and returned to the rehearsal sans oboe, just listening. The doctor visit was inconclusive. He advised “taking it easy for a few days.” I played parts of the second rehearsal that evening. No more blood.

WEDNESDAY – I took it easy all day, then went in for the evening dress. The screen was up, the movie played and we were joined by our Youth Chorus. I felt comfortable. I sounded good.

THURSDAY – I rested all day. On stage for the concert, I warmed up and felt wonderful. Five minutes before the concert I walked a few feet to MJ’s viola chair. I tapped her on the shoulder, leaned close to her ear and whispered, “Thanks for nursing me back to health.” Feeling a little misty, I sat back down to check my reeds one more time. I was ready. A minute later the chorus filed on stage. Several of them wore perfume, which is the most lethal irritant for my asthma. I hacked and choked my way through the performance, playing everything on a quarter tank of air or less. I chewed on cough drops between phrases. I don’t remember anything but MJ said I sounded fine.

FRIDAY – The endocrinologist called with my results. My testosterone is up 9,000%. I felt good about that and opened every jar of pickles in the house. He also advised me on my ongoing water retention. I have diabetes insipidus, a condition where I have uncontrollable fluid loss. I counter this with a powerful nasal spray, but I have been over-using the spray, which has led to the water retention. So instead of taking the spray on an exact schedule, I should wait every day until my body achieves “breakthrough urination” and then keep going and going until I get thirsty. THEN do the spray. But since he used the term “breakthrough urination” all I can think of are old Kool-Aid ads where the giant pitcher breaks through a wall. (“Hey, Kool-Aid!” “Oh, yeahhhhh!”)

Later in the day—and after several errands—my head feels weird. Pressure. My eyes hurt. My ears are ringing. My scalp is tingly. These are all things I felt before both surgeries and I haven’t felt these things in over a month. Late in the afternoon, I go to bed with a large bag of ice on my head, determined to play again that night.

On stage the chorus is fragrance-free, and I am grateful for that. But two minutes before the concert I slice my thumb with a razor blade from my reed-making kit. It bled freely into a tissue I grabbed, and the other oboist handed me a band-aid just in time for the tuning note. My head continued to swell during the concert and my ears rang like it was dinnertime after a barn-raising, but I was able to lay out of enough tutti sections to keep going.

I slept solidly (though with some strange nightmares) and this morning I feel better. But Nurse MJ has ordered me down for the day. She is in another part of the house right now so I could risk it and get up, but she patrols this area occasionally and I don’t want to get in trouble.

Back to Work

On Tuesday and Wednesday this week I had my first go at playing in the orchestra again. I had played my oboe a few times sparingly before this, but until now I have had the luxury of being in my house. If something didn't feel right I could walk away, but the same isn't true during a concert. I was worried about stage lights and hot flashes, about my new diabetes insipidus and forgetting to have water right next to me. I was worried about a sudden pop in my head and blood spurting out my nose (seriously). I was worried about my head spinning around 360 degrees (<-- joke).

I had a nightmare last night where I went on a camping trip but forgot to bring my medications. It was scary being stuck in the woods like that, but it was also a reminder I am returning to normal life because of modern medicine. My tumor is gone. Without neurosurgery I would be blind right now. The glands that regulate my body are inoperative, but I can manually replace everything my body will not produce. I can be normal (and I can go camping) but I need to remember my medication schedule. This is why I had that nightmare.

When I wake up first thing, I take a thyroid pill with plenty of water. Later, I take medications to control my blood pressure as well as another hormone pill. After my shower, I smear on a gel packet of testosterone. Later in the day I take another hormone pill and another blood pressure pill. Also, I use a nasal spray to regulate my diabetes insipidus. This last one is finicky because if I don't time the spray correctly, I develop either massive fluid loss (and extreme thirst) or major fluid retention (swelling of my arms and legs). I can always tell if it is the latter because my feet feel like jello and I can't wear my watch. If I let it get to that point, it takes a day or two to get back to normal (assuming everything else is taken exactly on schedule).

Aside from the minutiae of keeping my meds straight, how did I sound in my big return? Well, trying to be modest, I can still make reeds, I can still blow and I still have ears. I thought I sounded just fine.

Search Terms

An entertaining sidelight of blogging is keeping track of how anonymous people stumble upon your site. Here are some search words people have typed into Google in the last month which have led them straight here:

“i feel pricking needles on my upper body”
“husband has cirrhosis and is acting weird”
“Noah isogonic”
“someone cue the rocky theme meaning”
“i applied androgel to my scrotum”

I imagine my blog was not the first thing those people were looking for, but I hope at least they came away with something.

I have not been writing much simply because I have been up and about more. I don’t have so many endless hours on the couch anymore, and in less than a week I will be attempting a comeback at my job playing the oboe. I pledged I would never write out of a sense of duty and only when I felt compelled to share something very interesting. In the months to come, I would love to add more to this blog, but the schedule and the regularity are still question marks.

But believe me, I have plenty left to write!

On a side note regarding my health, one troubling thing that has arisen the past few days is the return of my cough after a four-month hiatus. It is not as debilitating as it has been the past three years, but nonetheless it is back. The culprit is clear – as I have weaned off pain medication, the cough has slipped back into my life. Earlier, it had disappeared just as I started taking heavier pain meds for my headaches following surgery. (Pain meds have the side effect of suppressing chronic coughs.) I had started treatment with an allergist a few months ago, and now I know I will need to continue the treatment of the allergy shots that were disrupted once the tumor was spotted. I hate my cough. It kills my spirit and I must get rid of it one way or another!

Stay tuned.