My pneumonia has turned the corner, and now everything feels like a really terrible chest and head cold. My doctor extended my antibiotics for a few more days to make sure the infection in my lungs will not return. It doesn't feel like I have coughed everything out of there yet, but it's not for lack of trying. The past few days have all seemed about the same. Low energy. Runny nose. Cough, cough, cough. This morning I took an extra dose of prescription cough syrup, bundled up and headed to the hospital for my brain MRI re-check.
I haven't seen the radiologist's interpretation of the MRI, but I have—to the horror of my doctor friends—looked at the images myself (which I took home on CD). As good as I am with my Mac for using Final Cut Pro, Motion, Photoshop, and composing software like Sibelius and Finale, I have acquired comparable skills with OsiriX. The latter is a free program that enables you not only to view all your scans but convert them into three-dimensional spaces where you can literally fly around the inside of your head as you might in a video game. It is purely for entertainment purposes (at least for me) and is not for serious diagnosis. But I have learned a fair amount about parts of the brain by studying my own MRI scans from before and after the two surgeries to remove the craniopharyngioma. It's fascinating.
This was (by my count) my tenth MRI or CT scan since October 1, 2009. Most of them occurred during the first panicky month when no one knew what I had. Since then, I have had them at increasingly wider gaps apart, the last one being six months ago.
This morning, I learned two tricks: bring earplugs (they really help) and check the box saying you are claustrophobic (so you have a better chance of being assigned the nicer MRI machine). There was an old ad where Ricardo Montalban said the seats of Chryslers were made with "Corinthian leather" which sounded so exotic. The larger and brand new MRI machine at my local hospital has a table made from what I would guess is something like Corinthian leather. Soft and luxurious. Feral kitten, perhaps. I hoped by checking the "claustrophobia" box I would get this machine today. I was so tired of MRIs!
As I put my earplugs in, my favorite technician came into the dressing room to retrieve me.
"Oh, it's you!" she chirped. "We saw you with the symphony a few weeks ago. I'll tell them to switch to classical music."
"Okay."
Beyoncé would have perked me up more, but I hate to burst anyone's bubble when they get excited about classical music. I was escorted into the newer room with the luxury MRI machine.
Sweet!
The last time I did have a serious problem in the smaller machine and—even though I don't have the same claustrophobia issues today—I was elated to see I had snagged the roomier model. With the Corinthian leather. In its own way this was like being upgraded to a suite instead of a standard room at a hotel when you had just paid at the front desk with coupons. As I settled onto the lush, padded table I heard the speakers click as the technician searched for another radio another station. A moment later the final scene from "Don Giovanni" piped into my headphones. The Commendatore was approaching and knocking on the door. The technician covered me with a blanket and clamped my head to the table.
COMMENDATORE
Turn thee, ere heav'n hath doom'd thee. There's time yet for repentance!
DON GIOVANNI
For me there's no repentance. Vanish thou from my sight!
COMMENDATORE
Dread then, the wrath eternal!
DON GIOVANNI
Away, thou spectre infernal!
COMMENDATORE
Yes, repent!
DON GIOVANNI
No!
COMMENDATORE
Yes, repent!
DON GIOVANNI
No!
On that note, I was slid deep into the MRI machine, resting on Corinthian leather.
I have had enough of these to tell subtle things from the tech staff regarding how things are going during the long test. There is a mirror titled at 45 degrees above your eyes which allows you to see out the machine and into the other room with the monitors. I could see my tech going through the motions, then—after he had injected me with dye and told me it would be just six more minutes—I saw him spot something on the monitor and call over the other technician. They discussed something, then picked up a phone. A third person wearing scrubs came into the room shortly thereafter, also peering into the screen.
Don Giovanni, long burning in Hell, was now the Mozart Clarinet Concerto. The music quit inside my headphones and the tech's voice spoke, "We're going to do a few extra scans to be sure we got something. Another ten minutes. Just relax and stay still."
"Okay."
All three of the techs watched over the monitor as the loud noises erupted from the MRI machine again and fought with the Mozart in my headphones. It reminded me of Kraftwerk, quite honestly. Kind of trippy.
"You're done," the voice said after a few minutes. "You can change back into your clothes."
I gathered myself out of the machine. "Are you calling for a hot read? Any flags?" I asked, intentionally baiting him.
"Your surgeon will be in contact," the tech said, which is the only thing any technician is allowed to say.
As soon as I entered the dressing room, another man staggered in after me, also wearing a gown. He had just had an MRI too and he was visibly shaken.
"Those are rough, aren't they?" I said to him.
"I'm used to it," he said. He looked disheveled and about ten years older than me. Then again, I look that way too. On both counts.
In the way patients tend to make small talk in waiting rooms, I offered, "I had a brain scan. Re-check."
The man looked me up and down. "Me too," he said, then turned the key to open his locker. "They called a hot read for me. Again. Looks like 'fluid,' they say. Again. And we know what that really means, don't we?" Then his tone of voice became more angry. He continued icily, "Well OF COURSE there's going to be all this shit in there if they keep going back in my head. Procedures over and over and over. Never any end to it. Never any good news. Never."
I wanted to hug this man. I realized the scan the trio of technicians were hovering over in the tech room was not my scan at all. It was this other man's. I was the lucky one today (or so I have surmised so far).
He also said, "I hate that smaller machine, you know. I hate it. Feels like you can't get out. I'm so sick of it." He disappeared behind a curtain.
Right then I vowed I would N.E.V.E.R. say I am claustrophobic again unless—on that day—I am truly feeling that way. And even then I might not because there are certain drugs I can ask for. I am a larger person than most, but I am also getting what are considered "healthy" scans. Others are more sick than me and I can suck it up for forty minutes if it will make the time easier for them. I have never felt so selfish.
In the waiting room this morning there were people with me (the odds say this is correct) who are dying of something, and dying right now. Those are the people who are looking for dignity. Those are the people who are looking for special treatment. Those are the patients who are looking for and deserve a little luxury right now, perhaps in the form of Corinthian leather caressing them as they endure yet another MRI. I'll never stand in someone else's way for that again.
Thursday, February 10, 2011
Monday, February 7, 2011
Oh, What a Night
Oh, what a night.
I think every one of us can recall at least a few "worst nights of my life"—those nights of pure agony where sleep is impossible, pain is immeasurable and morning never comes. Last night, for me: Oh my God.
My rapid decline has been as stunning as it is frightening. Just a few days ago I was feeling so optimistic I wrote an update which (in retrospect) I wanted to serve as a capstone or endpoint to me as a patient before my more mercurial side took over again. Apparently, my immune system has begged to differ. My issues are so intertwined I am like a house of cards; one wrong move and everything crashes down.
I am changing my name to Sisyphus.
It was just over a month ago—when I flew to New York to have my hand splint made—that I took my first brave steps out into the real, randomized world. Before then, we were careful that my healing would be as seamless as possible. My environments were controlled and I always had an exit strategy, mapped out hour by hour. I lived in my house in Grand Rapids watched over by MJ. I went back to work at the symphony using a careful plan to reintroduce the amount of stress gradually so the (literal) hole in my head would not open up. The bulk of the summer was spent in near isolation at our cabin in the northern woods. All of this was designed to control my environment so one random element (in the largest, abstract sense) would not derail my straight line of healing. Just a month ago when I flew to New York it was indeed jarring to be back on the streets, inhaling bus fumes and maneuvering past people wearing heavy fragrances. (In a symphony orchestra the use of fragrances is often restricted or banned.)
I survived the trip to New York and was emboldened by the notion that I could do normal things again. So, little by little, I did. I don't know if I can pinpoint the exact moment I decided to throw caution to the wind but sometime during the past few weeks I felt finally good enough to do anything.
When I went to Florida to premiere my new quartet and play the Mozart I must have picked up a germ or infection in the midst of all the plane rides and hotels. My immune system was more susceptible because I was pushing myself to the limit (something I had planned to do). In another strike against me, I had to use my diabetes insipidus medication liberally (the one that prevents me from needing to urinate every ten minutes). Because I didn't have the natural "breakthrough urination" every day, I was more likely to hold germs inside my body as opposed to flush them out. I don't know if I could have done anything differently with that particular medication; it's just the way it is when you travel.
When I returned home, I felt victorious having reached another goal. Yet I knew I was ever-so-slightly under the weather. In what was probably the tipping point, I decided to push myself just a tad more ("set another goal slightly out of reach") and I went cross-country skiing, thinking the fresh air would do me some good. It was only for an hour, and I felt on top of the world. But by the next day something wasn't right.
A cold, I thought.
So I bundled up for the next few days. Then the coughing started. When I played the second rehearsal of Beethoven's "Eroica" Symphony last Wednesday I had to bolt from the stage with the strangest sensation that I had to throw up. Yet I didn't feel sick in my stomach. I just wanted to heave something. I coughed for a while and then returned to the stage. Two nights later I was in the Emergency Room.
After last night (and with the help of antibiotics) it's finally coming out of me. For anyone who has experienced bacterial pneumonia, you know the horrid sensation of a foreign, sticky substance inside your lungs. As you lie still trying not to cough you can hear the air pockets inside your lungs opening and closing unnaturally, sputtering and clicking as barnacles and mussels do after the tide goes out. All night I hovered over the porcelain, my lungs regurgitating chunks of brown, white or red. Bit by bit. It all had to go and there was only one exit.
I must have finally collapsed by 5am. I slept a few hours. This morning I am supposed to go back in to see my primary care doctor for a follow-up appointment. Abdominal muscles, back muscles and especially external oblique muscles are so painful even touching them with one finger is excruciating. Yet that isn't the worst of it. The hernia on my left side (which has been surgically repaired twice and was a major source of pain up until five years ago) is now suddenly searing again. I wonder if the heaving and coughing from last night has caused the surgical mesh to shift or pull out of place again. It hurts too much to feel down there right now, but I will ask my doctor today to check it.
House of cards. The six-month MRI on my brain is still scheduled for Thursday. I never thought I would say this, but the MRI is the last thing on my mind right now.
I think every one of us can recall at least a few "worst nights of my life"—those nights of pure agony where sleep is impossible, pain is immeasurable and morning never comes. Last night, for me: Oh my God.
My rapid decline has been as stunning as it is frightening. Just a few days ago I was feeling so optimistic I wrote an update which (in retrospect) I wanted to serve as a capstone or endpoint to me as a patient before my more mercurial side took over again. Apparently, my immune system has begged to differ. My issues are so intertwined I am like a house of cards; one wrong move and everything crashes down.
I am changing my name to Sisyphus.
It was just over a month ago—when I flew to New York to have my hand splint made—that I took my first brave steps out into the real, randomized world. Before then, we were careful that my healing would be as seamless as possible. My environments were controlled and I always had an exit strategy, mapped out hour by hour. I lived in my house in Grand Rapids watched over by MJ. I went back to work at the symphony using a careful plan to reintroduce the amount of stress gradually so the (literal) hole in my head would not open up. The bulk of the summer was spent in near isolation at our cabin in the northern woods. All of this was designed to control my environment so one random element (in the largest, abstract sense) would not derail my straight line of healing. Just a month ago when I flew to New York it was indeed jarring to be back on the streets, inhaling bus fumes and maneuvering past people wearing heavy fragrances. (In a symphony orchestra the use of fragrances is often restricted or banned.)
I survived the trip to New York and was emboldened by the notion that I could do normal things again. So, little by little, I did. I don't know if I can pinpoint the exact moment I decided to throw caution to the wind but sometime during the past few weeks I felt finally good enough to do anything.
When I went to Florida to premiere my new quartet and play the Mozart I must have picked up a germ or infection in the midst of all the plane rides and hotels. My immune system was more susceptible because I was pushing myself to the limit (something I had planned to do). In another strike against me, I had to use my diabetes insipidus medication liberally (the one that prevents me from needing to urinate every ten minutes). Because I didn't have the natural "breakthrough urination" every day, I was more likely to hold germs inside my body as opposed to flush them out. I don't know if I could have done anything differently with that particular medication; it's just the way it is when you travel.
When I returned home, I felt victorious having reached another goal. Yet I knew I was ever-so-slightly under the weather. In what was probably the tipping point, I decided to push myself just a tad more ("set another goal slightly out of reach") and I went cross-country skiing, thinking the fresh air would do me some good. It was only for an hour, and I felt on top of the world. But by the next day something wasn't right.
A cold, I thought.
So I bundled up for the next few days. Then the coughing started. When I played the second rehearsal of Beethoven's "Eroica" Symphony last Wednesday I had to bolt from the stage with the strangest sensation that I had to throw up. Yet I didn't feel sick in my stomach. I just wanted to heave something. I coughed for a while and then returned to the stage. Two nights later I was in the Emergency Room.
After last night (and with the help of antibiotics) it's finally coming out of me. For anyone who has experienced bacterial pneumonia, you know the horrid sensation of a foreign, sticky substance inside your lungs. As you lie still trying not to cough you can hear the air pockets inside your lungs opening and closing unnaturally, sputtering and clicking as barnacles and mussels do after the tide goes out. All night I hovered over the porcelain, my lungs regurgitating chunks of brown, white or red. Bit by bit. It all had to go and there was only one exit.
I must have finally collapsed by 5am. I slept a few hours. This morning I am supposed to go back in to see my primary care doctor for a follow-up appointment. Abdominal muscles, back muscles and especially external oblique muscles are so painful even touching them with one finger is excruciating. Yet that isn't the worst of it. The hernia on my left side (which has been surgically repaired twice and was a major source of pain up until five years ago) is now suddenly searing again. I wonder if the heaving and coughing from last night has caused the surgical mesh to shift or pull out of place again. It hurts too much to feel down there right now, but I will ask my doctor today to check it.
House of cards. The six-month MRI on my brain is still scheduled for Thursday. I never thought I would say this, but the MRI is the last thing on my mind right now.
Saturday, February 5, 2011
Pneumonia
Well, so much for setting goals just beyond my reach. All this pushing myself has taken its toll. I have pneumonia again.
I just got back from the ER where MJ drove me this morning at 4:30am. I staggered in there coughing so hard I thought I would see blood. For the past day I knew something was wrong. I didn't want to eat anything, and I didn't even want to drink anything. I threw up water. When I got to the ER I was very dehydrated with a temperature of 102. They were certain it was the flu (or possibly strep) but when those came back negative they ordered a chest X-ray. Pneumonia.
Thankfully, this was caught very early and "7-10 days" is my turnaround time. I'm taking an antibiotic for a few days, but other than that I am confined to bed rest with plenty of fluids. I'm very tired, but more in a disoriented kind of way. I just want to lie down and close my eyes, let the world do its thing for a while without me.
I just got back from the ER where MJ drove me this morning at 4:30am. I staggered in there coughing so hard I thought I would see blood. For the past day I knew something was wrong. I didn't want to eat anything, and I didn't even want to drink anything. I threw up water. When I got to the ER I was very dehydrated with a temperature of 102. They were certain it was the flu (or possibly strep) but when those came back negative they ordered a chest X-ray. Pneumonia.
Thankfully, this was caught very early and "7-10 days" is my turnaround time. I'm taking an antibiotic for a few days, but other than that I am confined to bed rest with plenty of fluids. I'm very tired, but more in a disoriented kind of way. I just want to lie down and close my eyes, let the world do its thing for a while without me.
Wednesday, February 2, 2011
Update - General
This seems to be a prudent time to give everyone an update on my condition. December, 2010 was certainly better than December, 2009 for me. It wasn't pretty, but I reached my goal of playing every concert I set out to play, and I did not have to bow out of any performances at the last minute. December—to most classical musicians—is the month requiring the most dogged approach with any number of Holiday Pops, Nutcracker and Messiah performances. One way or another, I made it work and I got through everything.
Also in December I traveled to New York where a hand specialist (actually, one who specializes in treating woodwind musicians) made a custom splint for me so I can support my oboe and still move my fingers freely. It's not perfect but it works. I don't know why my arm has continued to malfunction but my gut tells me it is not related to anything neurological. Most likely it is—like my eyesight—just a by-product of age. I need to relearn how to hold my oboe so I don't put as much stress on my thumb. The tumor and the hormone replacement therapies have accelerated my crashing into menopause and all these issues are probably related to that.
On New Year's Day I met another goal by finishing a new composition (a one-movement quartet for oboe, violin, viola and cello) and played two performances of it so far with another yet to come next week. I wanted to push myself on this particular program, so we added the Mozart Oboe Quartet in addition to another composition of mine as well as a concentration-heavy piece where MJ and I do nothing but clap various rhythms. The Mozart in particular is a fantastic piece but it is also very difficult (and taxing). I made it through everything. Barely.
It is so important to me in my healing that I continue to set goals for myself that are just beyond my reach. Over a year ago my challenging goal was to stand up from the hospital bed by myself and walk to the toilet. That was it. The room was spinning and my brain felt like mud as spinal fluid spilled out my nose. But I made it to the toilet on my own and then made it back to the bed on my own. I started there and have set higher and higher goals ever since, always realistic but also always slightly out of reach.
Six months ago my brain was detonating with painful electrical shocks and I was conjuring hour-long auditory auras. I felt "sort of" normal some of the time but I was never quite sure what was reality. My goal was—simply put—to get a grip, to find a toehold somewhere so I could climb the next rung. I suffered from sometimes extreme disorientation and I simply knew I had to find a way back. I told myself, "There IS a way out of this. Where is it?" I found it.
My next goal is to return to performing at the level I know I am capable of reaching. I know what this feels like and I also know I am not quite there yet. I am close, but what separates me from that former self is a stamina that will allow for more practice time in addition to playing rehearsals and performances. In so many words, what I have been doing up until now has been coasting on talent. This was apparent to me when I played the Mozart Quartet last week. If anything, playing any Mozart is like having nowhere to hide and nowhere to gloss over little gaps in technique or intonation. The textures are so transparent everything shows. In Mozart, if something is a little out of practice it feels like you are wearing muddy boots to a cocktail party.
I did a good overall job (I thought) but both performances still had small mistakes and errors, the kinds real professionals should never make. I would say I am 90% there by now, but the final 10%, 5% and 1% will take a lot of work and a lot of setting more goals just out of reach.
Next week I have one more big hurdle before I am really in the clear: my six-month MRI. The previous MRI (a four-month interval) was essentially unchanged. If this next scan looks the same as the previous two, my odds go up dramatically that it will be a long time before I will have to think of myself as a patient again and not a classical musician.
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