Early Blog #5

I have a few more early blogs to bring over after this. This is me writing two years ago:

MONDAY, OCTOBER 12, 2009 7:18 AM, EDT

It is Monday, only three days out of the hospital, and I have already done something stupid. I'm still a patient recovering, and I should be staying horizontal as much as I can, doing nothing but resting, especially for the next two weeks. MJ is helping with everything.

I woke up at 6:15am and decided to go downstairs while MJ slept. I scratched Noah's ears, one of those simple pleasures I love in the morning, and he followed me around as I tried to do a normal morning routine. He got his pills, but I could not find his rubber Kong toy which I put peanut butter in for him to play with every morning. Sometimes it rolls under a chair on the porch, so I did a lot of standing up and leaning over, looking for it.

It made me dizzy.

I found it in the living room eventually. I smeared peanut butter in there and gave it to him. I tidied up a few things in the kitchen and noticed an overhead lightbulb needed changing (one on the ceiling only I can reach). I retrieved a new bulb from the pantry, stretched up, changed it and took the spent bulb and the cardboard box out to the garage. I threw away the bulb, put the box in the recycling bin, then started to walk inside.

The world turned upside down.

I don't know how I saved myself, but in a split second my head made a beeline for the concrete. I somehow regained control and carefully made my way back to the couch where I am now lying, feeling extremely dizzy. My spinal fluid is probably still leaking, wounds still healing, and my brain is still trying to figure out what to do with the extra space in my head now that the tumor is gone. MJ came downstairs soon after, made me tea, and I am once again committed to being a patient patient for the rest of the day.

It is strange how much of the little things I cannot resist getting involved in around the house—changing lightbulbs, etc.—when I see they need to be done. The major decisions of rehabilitation (like taking time off from work or not driving) are easy. But the tiny things are hard.

Last night, MJ and I had a quiet evening where she grilled some perfect steaks (usually my job), and they came out better than if I had cooked them myself. Also, MJ made the fire in the living room which is always my job.

I wanted to do this while she cooked, but lifting logs and stoking the fire are strenuous things I simply cannot do for now. I watched as she tilted one log straight up and added another. I knew this was the wrong way to do it, that the fire would die. I didn't say anything, thinking she would find out the hard way and learn. It was the way I learned to make fires: by trial and error on my own.

A few minutes later, to my amazement, the fire caught on again. It was not the kind of fire I ever made, but the vertical log began to burn with this sinuous flame that rose up from somewhere beneath it and swirled around the log sensuously before the flame disappeared on top. It didn't ever die. It kept burning and burning in this odd arrangement and it looked so alluring. I couldn't take my eyes off this simple, beautiful thing she had made using only her instincts.

I do spend a lot of time micromanaging and analyzing things, I suppose, and when I was in the hospital it is a wake-up call to have the tables turned on you. Maybe this happened the second day after the surgery, but a female doctor popped her friendly head inside my room and asked if a group of med students who wanted to study my case could come in.

"Sure," I said, groggily.

In a few seconds, the room was filled with a half-dozen young people in white coats, each wheeling in portable lecterns supporting their laptop computers. They surrounded me in a semi-circle around my hospital bed.

The doctor rattled off a number of things very quickly: "Male, 41 years old, 6'3", 230 pounds, history of hypertension, cough-variant asthma, allergic to caviar, dogs, cats, dust mites, trees, no known drug allergies, transsphenoidal approach for removal of pituitary tumor, pathology not back." The students tapped away on their keyboards.

It all seemed so deeply personal, how quickly this information was landing with strangers. I imagined her continuing in the same breath: "Childhood in foreign countries, caught playing with himself at thirteen, never gotten over it, adolescence of sheltered suburban paranoia and guilt coupled with a curious and intelligent disposition led him to break away from everything expected of him, pursued a career in music and embraced relationships with progressively destructive women until it all blew up in his face ten years ago."

I imagined the students tapping away some more, totally serious and intellectual. No one asked me anything. A few looked up from their computers to get a mental image, but mostly they stood and typed.

"Thank you," the doctor said. She waved and the students wheeled their portable lecterns out of the room efficiently.

Yesterday afternoon I looked in the mirror and noticed I will have a battle scar to show for last week. The bottom of my right nostril has a notch. A few days ago the surgeon removed the packing from my nostrils and sinus cavities. Dried blood was everywhere inside my nose. I am not allowed to blow my nose or clean it because things are still healing, but the outermost scab has fallen off. Sure enough, there it is in the mirror: a wedge of flesh missing from my face. A notch.

About 25 years ago, the time when my father first knew he was succeeding in business for real, he built a new home for our family by a lake. My mother's dream of planting and gardening went into full swing and they built a gazebo out in the yard so they could sit in the evenings amidst her creations, talking about things. His most notable animal friends out there were the two chipmunks Notch and Ragtail, nicknamed for their respective appearances. Ragtail had a tail almost devoid of fur, and Notch, his favorite, had a chunk of his ear missing. I always wondered what had happened when Notch lost the tip of his ear. My father would bring some peanuts in his pocket on the evenings they sat out there.

"Notch! Notch! I have your peanut!" he would say.

I was gone at Juilliard by this time, but when I was home for school breaks I could see this firsthand. A chipmunk would appear in the distance and see my father holding up a peanut between his thumb and forefinger. He would tap the peanut with another finger. The sound of the rattling nut cutting through the still air would prick Notch's ears to full attention. Notch would run quickly across the yard, crossing half the distance in no time. My father then placed the peanut inside his shirt pocket. Notch would slow down, climb up onto the gazebo, up the back of his chair, over my father's shoulder, go into his shirt pocket, emerge a moment later with the peanut in his mouth, then scurry back to his nest. This repeated a few more times every night until the peanuts ran out.

Ragtail sometimes got in on the action, but Ragtail was always more reserved, watching over things as they unfolded. I sensed my mother took a liking to Ragtail's caution while my father enjoyed Notch's initiative and ingenuity. For all I suspect now, Notch and Ragtail were a couple.

As I study the new notch outside my right nostril, I know I might be asked about it in the years to come. I don't have other visible scars, and since I never excelled in sports or got into bar fights I've never had to deal with a battle scar. I suppose it's the sort of thing other men do—telling stories of how they got this one or that one—and on some level I always wished I could join in with that, telling an inaccurate, elaborated story about a fistfight, an attack by a wild animal or a cheap swipe from an opponent's hockey stick.

But if I am asked about my notch, I can say I got it when they took a golf-ball-sized tumor out of my head. That will surely shut anyone up.

Early Blogs #3 & #4

More from over two years ago. These are the first two blogs I wrote after coming home from the first brain surgery (October 10 & 11, 2009):

SATURDAY, OCTOBER 10, 2009 2:47 PM, EDT

It has been a day since I decided to come home to continue my healing. One thing clear to me is that I am still a PATIENT. The familiarity of my surroundings at home encourages me to get back on my horse, doing normal things like filling Noah's water dish or answering the door. In reality, even simple tasks like this are difficult.

Last night I went straight to the couch, ate a plate of roast chicken MJ made for me, watched "The Office", then went to bed with a a pain pill. I woke up at 4am, disoriented, and needed another pill for my splitting headache. At 5am (my usual waking time where I use the morning hours for seeing after Noah's morning routine, composing, and relaxing with a crossword puzzle) I was encouraged to keep dozing in bed while MJ took care of Noah.

I got up at 7:30am and used all my power to get down the stairs and lay flat on the couch. Having switched to oral medications (which are weaker and less responsive than intravenous) I feel achy and also like I have received one heck of a punch in the nose (the entry site for getting to the tumor). I feel like Mike Tyson, only without the tax issues. Actually, scratch that; I feel like Mike Tyson.

As I lay on the couch, MJ brought me hot ginger tea and a cold glass of authentic apple cider. After five days of sickly sweet hospital apple juice, this was more welcome than you can know.

I have spent a quiet morning and afternoon reading and catching up, but other things will have to wait. A pile of mail sits unopened on the stairway going down to my desk. I won't worry about leaving it that way for a few more days.

I did the entire Wall Street Journal crossword puzzle in one sitting, and it was while doing this that I noticed my eyesight was better. Even though I still have dimness and color loss in my left (dominant) eye, I was able to read the print clearly. Most importantly, the "depth of field" was coming back. I held the paper at various distances from my eyes and I could focus on the words. Previously, I could only find one fixed distance from my left eye where things were in focus.

The pathology came back on my tumor but it is even more confusing now. We do know it was a tumor, but it was not a traditional pituitary tumor. It grew right next to the pituitary gland and crushed it (making it look like a regular pituitary tumor) but it did not originate from it. Comprised instead of "dead ghost cells" around which a cyst or cysts were forming, I know my case is now being sent around the country to people who study atypical tumors like mine. Complicating this, the spinal cord leakage was adding another veil to the case. Once again, my medical issues place me in the 1% of cases that don't fall conveniently into a single category. The good news is in all likelihood my pituitary gland will be able to spring back without a lifetime of hormone replacement therapy. This is very appealing, but I still want to know just what the heck it was in the first place.

So, things are getting better. But I still feel awfully dizzy every time I stand up, and I am still supposed to spend the majority of my time in a horizontal position. I'll probably watch a movie this afternoon and sleep some more. There is no replacement for solid stress-free rest.


SUNDAY, OCTOBER 11, 2009 9:54 AM, EDT

Sunday morning. One way I can judge the past week is how fast Sunday has rolled around again. All Sundays have special pacing. For me, it's the extra time in the morning with the paper, a larger breakfast, and (in the Fall) the Detroit Lions games. It seems way too soon for another Sunday to be here already.

Last Sunday was my final day before surgery. I was nervous and also in denial about what I might be up against. I tried to make it as normal a day as I could. MJ and I watched the Lions lose another game and she made me a special old favorite: bone-in pork chops and macaroni and cheese, her father's recipe. I was not feeling very well all day. I had terrible headaches, deafening ringing in my ears, and my vision was so disorienting I could barely read or use my eating utensils without dropping food.

What followed the next six days was a blur I am still sifting through. It is all just images now, popping back in my head randomly yet with clarity. I am trying to remember when certain things happened. My memory has always been good, and as I continue to rehabilitate at home I'll have a lot of time to reflect on what happened last week.

Monday night, after the surgery, is coming back. This was one of the worst nights of my life. I remember being wheeled into a bright room filled with advanced equipment. Already feeling the effects of drugs designed to calm me down, I carefully hopped across onto an operating table. The anesthesiologist handed me a breathing mask and told me it was just oxygen and to breath deeply. I did, and continued to look at the computer monitors and bright lights overhead. Soon, my lower jaw would not move. After another breath I felt extreme pain. I opened my eyes and found myself in a different room. I screamed and someone injected something in my IV.

"Is the surgery over?" I asked.

"Yes."

"I'm so thirsty. Can I have a sip of water?" A straw was put at my lips and I sucked. The pain seared back through my head and I screamed again. Another syringe flashed in front of me and I felt better. I asked again if the surgery was over. I could not believe it.

For the next bit of time (I have no idea how long any of this took) I kept asking for more water, more water, and the pain never ended. They wheeled me to a critical care room in the neurological wing then brought in my wife and a friend who had sat with her the whole time through my surgery.

I needed more water and kept asking for it. Pain relief and water was all I wanted. I never knew who the people were around me because it hurt to open my eyes. Soon enough I could hear MJ's voice. Another straw was put to my lips and I sucked down a full glass of water and then gasped for air. I felt my wife's hand, clenched it, then felt for her friend's hand and clenched that too. I held both so tightly and cried out.

Not much else is clear, but later that night MJ had gone home and I knew I was alone with a nurse. Every time I woke my mouth was dry and baked. An oxygen tube dangled in my mouth because my nasal passages were sealed shut with surgical packing. I lay flat on my back and often my tongue would fall to the back of my dry throat and stick there, cutting off my air supply. I would jolt awake, gasping for air, begging for water, sometimes chewing on the oxygen tube in desperation. Then a sear of pain would hit. Then a syringe would flash by again. Then the whole process would repeat and repeat.

One point during that first night, I opened my eyes to see the nurse studying me closely, standing up and taking notes on her laptop which sat atop a lectern. I was so disoriented. All I remember asking over and over again was whether my dog was at the foot of my bed, whether he was okay, and whether she had given him his evening pills. I asked her this over and over, and she typed notes about this on her laptop.

One thing I never would have predicted last Sunday was that I would be walking outside on my own today—this Sunday morning—retrieving the paper from the driveway and sitting down with it in my Lions sweatshirt, sorting through the various sections. I continue to be dizzy taking even short walks to different parts of the house, but the thought that in one single week a tumor has been extracted from my head and I am thinking normally and doing normal things in my own house just amazes me.

I Can Do This

I am calling today's blog "I Can Do This" because—more than anything—this is what I have been telling myself from the moment I was strapped in for my MRI.  As I disappeared inside that enormous machine just past midnight a few weeks ago—knowing I would not be coming out for another four hours—I breathed out and opened my eyes.  A mirror just above my face was supposed to be angled so my view would refract into the open room, taking away the anxiety of claustrophobia.  Something was not set correctly (I guess) and the only thing I could see were my own eyes looking straight back at me.  I was trapped deep in the recesses of a million-dollar piece of medical equipment.  No way out.  I had a buzzer to press anytime I wanted out (which would mean starting all over) but I didn't use it.

I looked into the eyes looking back at me and said, "I can do this."

One tumor and one emergency surgery later, I now find myself with a rebooted brain. It's the same mind I have always had with the same memories, but everything is different. At first I was physically disoriented—dizzy to a point where I could not stand up—but now my challenges are purely mental.

My entire life before my surgery I felt like a little person inhabiting the space inside my skull.  The little alien from "Men In Black" or the rat in "Ratatouille" are good metaphors. I was my mind only, and the rest of my body I trained to do things and feel things to look real. From an early age I remember that sensation of teaching my body to follow instructions as I picked up clues from other people —

This is where you make a joke.
This is where you cry.

This is where you high-five someone.
This is where you throw yourself down in frustration.
This is where you kiss the girl.

By reading how others reacted to me, I used my intellect to construct a way to fit in seamlessly. I felt like a fax copy of a person the whole time, being clever enough to act a split-second ahead of things so as to pass by unnoticed amongst the flesh-and-bloods.

Now that my tumor is gone, I feel real, and it is overwhelming. Whereas things before seemed like a series of corridors and familiar doors I had set up, now it is like swimming in an open ocean with possibilities in every direction.

"Are you ready for this?" MJ asked me this morning. She had been keeping a keen eye on me for weeks, and she already knew the answer.

"Yes, I can do this," I said.

She put me in the car and drove me to rehearsal. I am many weeks, perhaps even months, away from returning to my life as a performing classical musician, but my new music group (who has replaced me in the meantime) thought it would be helpful if I play two notes on a harmonica for a modern piece coming up in a while. Just being on a stage with musicians—something old and familiar—might be a good thing for healing, a reminder that there are other safe places in the world besides the security of my couch.

On the way to rehearsal, MJ encountered a maze of detours as unexpected road construction pushed us farther and farther off course.  For a mind like mine so dependent on rational order and symmetry, the experience of not being able to take a straight, familiar path from point A to point B was jarring.  I got suddenly irritated and anxious.  I was trapped in a car, far from home, with no back-up plan.  We were doomed.

We pulled to a stop. If MJ and I were the type of couple who ever fought, this is where it would have taken place.  But we don't ever fight, so we didn't.  But I was frustrated and disoriented.  I closed my eyes.  I wanted to shout that we should take the car straight home, go right back to the beginning, and try a new route.  But I didn't say this.  I breathed in and out and just waited while the car idled.

I said to myself, "I can do this," and relaxed again.

I opened my eyes and looked at the house on the corner.  It had a couple of lawn ornaments—life-sized wild turkeys—adorning their front yard.  Seasonal, I thought.

Then the wild turkeys moved.  They were not lawn ornaments.  They were real pair of wild turkeys wandering in the middle of East Grand Rapids.  The male looked right at me—I could feel this—then he turned his attention to the female. He ruffled his feathers at her and splayed his tail apart, effectively doubling his size.  The female was nonplussed and wandered into the street.  The male followed behind her steps methodically, like a stalker.

"They should get out of the road!" MJ said as we pulled away, now having figured out our new route.  "They're going to get hit."

She dropped me at the rehearsal.  I would just walk in, sit for minute with some friends, blow into a harmonica, then come back out.  Therapy.

"You'll be okay?" she asked, knowing the answer.

"Yes."

I left the car, waved at her, walked around the corner on my own, and went inside.  Everything outside my house seems big and open, and this was no different.  I walked inside to see some familiar faces and answered the usual questions where I said how well things are going for me.  I took out my harmonica and sat between the oboist who is filling in for me and the harpist.

More questions about how I am doing.  ("Fine." "It's different." "Coming along slowly, but I'll get there," etc.)  But I was overwhelmed and had that feeling I was in an open sea with no corridors or familiar doors. My words were normal, but the harpist could see the water in my eyes.  I sat still in the chair, looking at the ground for a moment, trying to compose myself.  I was either going to faint, bolt or I had to find another way to deal.  I saw a hand—a woman's hand—the only anchor I could possibly conceive of right then, and I grabbed it.  The harpist stood suddenly and embraced me warmly while I shook it off.  I looked at her and said, "It's okay. I can do this. I'll be fine."  And right then I knew it too.

I sat through the piece, sitting amongst the musicians, listening to this gorgeous music around me, more beautiful than I had ever felt before—more real—and by the time my note came up I was feeling completely normal. I blew the chord on the harmonica and I guess it sounded like a harmonica.  I left and went back outside, where MJ was waiting in the car, now back from a quick errand.

"How did it go?" she asked.

"Good!" I said.

She drove me home and made lunch.  After lunch it was time for Noah, our 9-year-old Newfoundland, to get his walk.  Until now it has not been part of my rehab to stray too far from the couch so MJ has done this part alone.  But I felt energized from my earlier success—spry, perhaps—and also I felt a casual stroll might do me some good.

"It'll be nice to have you with us on the walk, then.  I'll get my coat," MJ said.

"I want to do it alone," I said.

She was not so sure.

"Seriously," I insisted. "I have a phone. It's just to the end of the block and back."  I thought some more and then said, "I can do this."

"Okay."

I got Noah's leash and a few plastic bags for another purpose. I hitched him up and opened the front door of our house.  Noah went down the steps and in no time we were halfway down the street, just the two of us.  It felt strange, kind of open.  In the past I would think of a dog walk as a straight line, a simple equation where you take your pet to a certain point, wait for him to do something, then come back.  But this felt very airy and open, very real for once.  I liked it, and the crisp autumn air and colored leaves added an ambience I could simply feel for once instead of having a theoretical appreciation for.  I felt so normal I took out my iPhone and posted a status update on Facebook: "Alexander Miller is walking his dog for the first time since neurosurgery (big step!) and it is beyond therapeutic."

Noah turned the corner and we went to the bottom of the hill on the next street. We crossed to the other side and began the return portion of the walk. Something about this made everything feel wrong, just plain wrong.  Things were upside-down and I couldn't get a handle on how everything corresponded to everything else.  I never felt in danger (like I would freak out or anything like that), just a general sense of malaise that the world was not ordered.  I was once again floating in the ocean.  I closed my eyes and tried to focus.  All I can say is I reached deep within myself and said, "I can do this," and opened my eyes again.

Noah didn't know.  He plodded along as he does every single time, expressing interest in the same trees, doing his "opera conductor" moments of "marking, marking, marking" (one of those musician jokes).  Noah pulled me forward, guiding me, not knowing my face was suddenly so flush I could feel wetness running down my cheeks.  He kept going forward as he does every time.

I was still overwhelmed.  I had no hand to grab onto, but I had a leash.  I thought to myself, "This is the part where Noah goes to the next tree."  And Noah did that.  Then I said (aloud), "And this is the part where Noah goes to another tree."  Noah did that too.

When we got to the corner, Noah looked at me.  I was still very disoriented.  I said to him, "This is where Noah turns the corner."  Noah turned the corner, guiding me on a ninety degree turn to the left down our street.  I felt better, and I said, "This is where Noah walks forward down our street," and Noah walked forward.  I said, "This is where Noah takes me all the way home."  And Noah led me straight to the front door.  I was crying openly by this time, not out of panic or disorientation anymore but rather simple joy that I could find my way home, using my own methods.

To someone watching me, they might not have noticed a thing out of the ordinary, but my mind continues to surpass these large hurdles as I continue my rehabilitation.