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Saturday, December 15, 2012

The Foxy Nurse Will See You Now

Knowing just when to put up a new blog these days is hard. The most immediate dangers I faced are behind me unless the tumor starts to grow back. Medical updates are more general; I have good days and bad days, dizzy days, hot flash days, freeze flash days and sick days that occur more frequently because of my overall condition.

It feels wrong to write a blog every time I have a bad day because there are so many of them. Good days always follow. The other reason I haven't blogged recently relates to how fruitful the past few months have been for composing. I am writing an ambitious 35-minute cello concerto and it takes up all my spare time. Composing music requires a certain abstract mindset that is hard (for me) to nurture to a point where I can produce something good. Composing words is a jealous mistress to the other half of my creative self. Once I get going with words the music usually dries up. With a deadline and a lot left, I don't want to risk it.

But sometimes things happen that are too personal not to share.

I have had two hernia repair surgeries, in 1999 and 2005. I have barely thought about them recently but over the weekend I felt a rip, then a numb pain in my left inguinal area, which is just above the hip. In the shower on Monday I felt a bump down there. If the area had just given way again, I was done playing the oboe for a while.

"Call the doctor," MJ said.

I did. They squeezed me in.

"Drop your pants. Your underwear too," my doctor said.

I did. He performed a fairly thorough examination but could not find a new hernia.

Likely what happened was the surgical mesh I have implanted in me—holding my lower intestine in place—tore away slightly from the tissue to which it was attached. There are no sutures. This has happened a few times, and it always reattaches to the surrounding tissue again. The mesh is a free-floating foreign object under my skin and it shifts around.

My doctor then ordered an ultrasound, which he has never done before.

"Why?" I asked.

"To rule out some things."

I had heard that line of malarky before.

The next day I had the ultrasound. I assumed they were looking for internal hernia tears, but it wasn't until I got to the imaging lab that I read the written order: "Ultrasound: (L) and (R) scrotum."


In the waiting room I had a few minutes to think through what was about to happen. Wait ... how are they going to ...

"Alexander Miller?"

A pert technician poked her head around the corner. She asked me to follow her. I did. She was somewhere between 24 and 25 years old, if I had to guess. Attractive. Virgo, maybe. Her wavy auburn hair cascaded just below shoulder length and it danced as she walked. This was very interesting because I am married and baseball square of the hypotenuse.

She led me into the exam room and dimmed the lights.

"I will exit the room now. Take off your pants. Underwear too. Lie on the bed, covering yourself with the sheet."

I did. It had been a week since my last confession. Crikey.

She came back inside with a towel. She closed the door.

"Pull your penis onto your stomach and cover only your penis with the towel. Leave your scrotum exposed."

I did this, then said, "Okay."

She pulled the sheet down and, before I knew what was happening, she slathered a warm, slippery gel all over my scrotum. Then she slid the ultrasound camera slowly up and down, trying to find the correct angle, up and down. It felt good but a moment later my instinct was to be more aware and proper about things. Still, the initial moment was permanently etched into my history as a married man now. The sheer luxuriousness of it had caught me off-guard.

She didn't speak and I tried to put my mind elsewhere. I picked up the reading material I had brought to the waiting room: Carlos Salzedo's "L'Etude Moderne de la Harpe" ("Modern Study of the Harp") where I had been studying details about the complicated harp notation in my cello concerto.

The open page discussed advanced finger techniques for the harp. The first was:

"Aeolian Flux, obtained by gliding in the center of the strings, upward with the 2nd or the 3rd finger, downward with the thumb, the hand wide open without any stiffness."

The next one:

"Aeolian Rustling: The hands, pressing the strings, are drawn slowly across them, fingers close together in the horizontal position."

I clawed to the next page—any page—and read:

"Falling-Hail Effect: by gliding in the center of the strings, with the back of the fingernails; in descending, the palm of the hand inward; in ascending, the palm of the hand turned outward. This sonority is finest when played softly and rather slowly."

The technician finally spoke. The machine was having technical difficulties. We needed to start over.

So far, outwardly, I was doing okay. I set down my reading material and thought about all the men who had gone through this, specifically the men this particular technician had given an ultrasound to. I am sure she had seen everything, every reaction. Knowing men as I do, I am sure more than a few had made jokes—about if they needed to tip her, about if they needed to buy her breakfast—each of them thinking they were being so very original, the first man ever to think of a joke like that. If men have a signature fault it is probably the inclination to mistake crassness for cleverness, or to use these two opposites interchangeably.

As is me, I wanted to be the most evolved of them all, the nicest, the one man who got through this better than all the rest, the one she would remember as the most decent. She didn't speak much, probably for the best, and I didn't either. I did ask a few things about the machine, about anything technical I could think of, but when my questions ran out I just lay there, thinking of as little as possible.

A short while later the ultrasound was over. She left the room. I was happy I had made it through with my dignity in tact. I am sure that the technician, after administering hundreds of these tests, had seen most men develop erections, and I am sure she is then supposed to say something about involuntary reactions if the man starts apologizing. But I say men can control that. I have always been able to. It is only 99% involuntary.

Afterwards, she came back in the room with my checkout papers. She could have led me right out, but instead she made small talk. She asked questions about my brain surgeries and we talked for a while about that. She smiled. The waiting room wasn't busy. We talked about life in the symphony, then I asked her about her job and asked more questions about the equipment. She talked some more, and—probably in my own mind, male that I am—I thought her demeanor suggested a certain amount of respect for me regarding the subtlety of how I had gone through this. Wordlessly, I had passed with flying colors.

She knew during the test that I was trying to treat her like a lady, trying not to take advantage—mentally—of the unusual situation when it would have been so easy to do so. I imagine some men lie back, sigh and develop a stupid grin on their face during a testicular ultrasound, in full view of the attractive technician, not understanding the depth of the faux pas, thinking only of what they were going to brag about at work the next day. My goal was to be decent, to be one of the few who didn't, for her benefit, out of respect for her professionalism, and I know she picked up on this. Technicians are hard workers. We all work hard, of course, and finding small ways to pay simple respect back and forth goes a long way to smoothing over all the other fleeting moments of indignity that leave a sour taste.

Three days later my doctor called. The ultrasound was negative. Negative for hernia, and negative for testicular cancer.

Thursday, September 20, 2012

Annual MRI Results

My annual MRI was this morning. Even though I have not seen the technician's report, I think my Magic 8-Ball says: "ALL SIGNS POINT TO YES" (Yes is good.)

To the ongoing chagrin of my doctor friends, I studied my brain images this morning and they look the same as last year's. The pituitary area still has that darned spot that was the subject of debate at Tumor Board, but it has not changed or moved in almost three years. It shouldn't be there, but at least it is dormant. The sleeper cell in my own brain, perhaps.

Also, the plaque from my "T2 Flair" series of images looks exactly the same.

Long story short, my ongoing issues with dizziness, ennui, yo-yo testosterone and pandiatonicism all likely stem from the medications and hormone replacement therapies, not the tumor itself.

This is both good and bad news. If the tumor had started to make a move, we would have an explanation and a course of action. With a boring MRI result, I have to decide whether to tinker with my meds or just accept things as they are. As I wrote before, it's not so bad, but I know what "healthy" feels like and I'm not there.

Still, I'm not dead—which is a plus—and I have good vision in both eyes which is even better during football season. For now, I'll take it.

Saturday, July 28, 2012

Cabrillo 2012

We are now at the Cabrillo Music Festival in Santa Cruz, and everyone who has not seen me in a year has been asking for an update. In a nutshell, these are the facts:

Next MRI is in a few more weeks. (The last one was 11 months ago.)

The partial retina detach from chorioretinopathy is holding. A few weeks ago a retina specialist checked me out. There is still a scar at the back of my right eye, and along with it a little visual defect. It won't heal, but it is much smaller that the original red dot.

No "brain shocks" at all for many months now. Those may be gone for good.

Managing the diabetes insipidus (DI) is really the hardest part of all this. Every day I go through the cycle of aversion to salt, extreme thirst, "breakthrough" (where my kidneys flush everything out uncontrollably), then the nasal spray with the hormone that shuts the kidneys back down again. If I don't do it right my body retains too much and I bloat up or get sick. It's important to let the breakthrough happen thoroughly. But in flushing myself out I can also become deficient in vital things like potassium or sodium if I am not careful about what I eat. Last night at the rehearsal something was not right. Medium headaches, a "frosty" feeling in my bones, and weak hands.

At Cabrillo Festival 2011, I was determined to make it through the whole thing, strong from start to finish. I did that, but I also had a severe crash (or "body shut down") when I came home. I have certain allowances for managing my hormone replacements, and last year I—um—kind of abused the privilege, turning myself into an indestructible hormone man. I felt great for the festival, but of course I crashed later.

For the past year I have been more sensible about my limits, staying in the center. I pace myself to peak at concerts, sometimes at the expense of rehearsals, but that is just where I am right now, so grateful for a work environment where my colleagues trust me to figure it out. My goal for Cabrillo this year is to play great at the concerts and then not experience any post-Cabrillo crash when we return home. I think I can do it.

Wednesday, May 30, 2012

If a Tree Falls

I have opened my heart once again, and to this I say “thank you” to everyone who loves me. I was morel hunting this morning—one of my private passions I don’t need to talk about—and suddenly it hit me how wrong I have been approaching the last few months. My biggest fault is to clench my fists after breaking new emotional ground when in fact these are extremes, intimately combined and yet irreconcilably unrelated.

I have been steeling myself because I had a dogged determination to make it to the finish line of the fall-winter-spring season of my orchestra. Unless I have forgotten something, I have played every single rehearsal or concert required of me since last year’s Cabrillo Music Festival thru the entire main season of my home orchestra in Grand Rapids. That’s a whole year. I have cells of a craniopharyngioma floating in my brain and yet I did my job the same as everyone else, tumor or not. Yay, Ale!

The first few times I passed this test, there were parades. Ticker-tapes! Then, after a while, it got old. I’m jumping through the same hoops. The crowd thins out and I have to find the strength to do this on my own. With dedicated fans watching the same heroic act getting lamer, I get bored too. There is nothing innately fantastic about watching an anemic person get hormone replacement therapy so he can do normal things. Ale washes the dishes and the crowd goes wild! No, it’s not really that good. And yet it is.

People in my same position, diagnosed the very same month as me in 2009, have now notched as many as seven brain surgeries. I had two quick surgeries, one after the other, and since them I have been fine. This is luck, or destiny, or whatever you want to make of it. I get to go morel hunting as recently as this morning, slipping on my long boots, happily stumbling up and down steep slopes of trillium. It is gorgeous, God-given beauty, smelling the apple blossoms and wild ferns multiplying in the deep woods. Not a voice is heard for miles and miles, not a car, just the distant call of birds and the comic chatter of squirrels. I need to be here, so deep in the woods, so close to nothing in particular. I don’t need to be alone, but I need to feel close to the natural order of things for some reason.

I found only one morel today, an old one. I suspected the short morel season was already over and this confirmed it. As I unfolded my knife and cut the mushroom from the ground, I wondered if there were anything of significance farther down, any reason to dig hundreds or thousands of feet beneath that point. Then I looked up and saw only the sky, the clouds, and the glare of the sun that made me look away. Maybe there wasn’t anything up there either. Maybe it was just me kneeling on the damp earth, parting the wet, dead leaves with my bare hands and wiping them on my pants because I didn’t want to get my sweatshirt dirty because it was the one washed the day before. Maybe that was it. The solitude around me thickened like the moisture on the back of my neck. If a tree fell in the forest that day, I would have heard it.

Friday, May 4, 2012

Endocrinologist Visit

The endocrinologist made the decision to increase my testosterone replacement therapy. We are still going to use the same gel as before, but now the dosage will be doubled. It is strange how it worked so well at first, then steadily tapered off in effectiveness over the past two years. All hormones are critical in their own way, and being without them has given me a real appreciation for what they mean to our normal lives.

I thought I was at the maximum already with the AndroGel and I feared I would need to be transitioned to injections. But I guess—in the words of a Ghostbuster—there is more sliming to be done.

I would love nothing more than a normal amount of energy going forward. I'm so tired of being tired, and I hope this will finally do the trick. There are some big projects on my plate all summer, and lots of work ahead. I can't wait to tackle all of them once I have my levels back in the normal range.

Tuesday, May 1, 2012

Scoring Low Again

I have an endocrinology appointment on Thursday but I already know my test results. Last week I popped into a lab for my regular blood work, and since I created an online account with the hospital I can view all the results as soon as they come in. My basic metabolic panel was in the normal range, also the Free T4 test, but once again I flunked testosterone. For almost a year now this number has been low, often way too low.

Testosterone is the primary male hormone, and without it I have no energy, no natural drive or zeal. You cannot "will" yourself to do things (even mental things) when you are depleted of this hormone. The past few weeks have been very taxing, so maybe this explains why a test at this juncture measured so small. But I don't care about the reason, really. I just need to have a certain amount in my system at all times, like a normal man my age, in reserve, so I can tap into it when a concert requires more energy or when I want to stay up all night composing.

Oh, this is so frustrating. I know what some alternatives are, because I read about them last fall, the last time I failed this test. Daily shots in my stomach are one solution. Not crazy about that possibility, but maybe my endocrinologist will instead have me increase the dosage of the gel I smear on for now, or change brands.

It might be more difficult with me because this particular hormone is replaced completely. Some of my other hormones are like supplements; what I take "tops up" what my body doesn't make in sufficient quantities anymore. But with testosterone the artificial replacement starts from zero, because that's where my number would go in about a week without access to the treatment.

What's that song again? "What a man, what a man, what a man ..."

(Shrugs.) Oh well, I'll keep trying.

Tuesday, March 27, 2012

Two More

At least it’s always different with me. As a patient, I don’t feel stuck in a rut. I am, more accurately, an evolving set of problems. Like the last few buttery peas on your dinner plate, you want to spear them with your fork and be done with meal. But they slip to the side, scattering into different patterns. Every time you think you have things calculated correctly, something else happens. Life as a patient, every day a little different.

In the last day I have had two more of my “brain melts,” but they were, alas, different than before. Previously (this was over a week ago) they were episodes lasting about ten seconds where the left side of my brain would go numb and I could not hear out of my left ear. They came and went over the course of a few days, and they were basically gone by the time I saw my doctor on a Monday morning. No medications were added, and the explanation of migraines still makes the most sense to me.

But yesterday afternoon I had a single “brain melt” that lasted ten minutes. I can’t be sure of the length because I didn’t time it, but around noon my left ear began ringing loudly, then it went totally deaf, as if I were just smacked hard on that side. I felt dizzy, disoriented. MJ was out on a walk, and—for whatever reason—I turned to Noah and said, “Ruh-roh,” even though humor was far from anything on my mind.

I thought the event would be over a few seconds later (as before) but it kept going. I went onto the couch and put my feet up, waiting for it to pass. When it didn’t pass in the first minute, I seized the opportunity and ran through a mid-brain-melt checklist so I wouldn’t have to think backwards after it was over.

For at least five minutes and probably more, I asked myself, “Okay, wait. Is this really happening? Is half my brain and head numb? Yes, this is really happening. Can I hear out my left ear? No.” I snapped my fingers next to my left ear, then my right. No hearing on my left side. I wiggled my fingers, touching each one in both hands to my thumbs. I closed my eyes, stretched my arms out (while still lying down) and then touched my nose with my eyes closed. I missed and hit my eye, but I always miss. I opened my eyes and stared out the window into the bright sky. One eye closed, then the other. Both fine. I smiled, moved my tongue back and forth. Fine. I couldn’t think of much else to do (and I didn’t want to stand up) so I made up tongue-twisters, like “Rikki-Tikki ate a starchy quince schmaltz tart.” Everything was fine, yet the episode was definitely occurring. About ten minutes after it started, I felt my hearing come back and it was over. I stayed horizontal for another ten minutes, and by then MJ came back from her walk. I sat up carefully and felt fine after that.

The next few hours, my tingly scalp returned. It wasn’t as bad as before, however this morning (about eighteen hours later) it is closer to how it was two weeks ago: very sensitive and painful to the touch. Last night, at some point, I had another one of these brain melts. I was awake, staring at the stars out the window, thinking about words and music, music and words, and I heard the ring in my left ear, then the deafness once again, then the numbness. I was too tired to do much about it, so I just let it pass. If I had to guess, it was about the same length. Ten minutes or so.

Is there anything to do about this? I can’t think of a single thing. I live with a very rare condition (where most are a lot worse off than me) and all I can do is try to minimize stress, take notes, and get on with the non-patient side of my life. What else is there to do?

Monday, March 19, 2012

Doctor Visit Update

Feeling very sleepy, but everyone wants to know what happened with me at the doctor. (And this is how I write when I don't revise or edit.) Anyway...

There have been no more brain melts today. My scalp now has the slightest tingle left, but it is almost gone. This is the very tail end of the storm. My doctor visit was lengthy, maybe an hour face-to-face, and we talked through everything from a number of different angles: every one of my medications, the history of my brain "shocks" and how they might have morphed into brain "melts," the possibility of this being my first migraine, my diabetes insipidus, my intermittent problems urinating, the variations of my eating and my sensitivity to salt and sugar at certain times ... we covered it all.

Since I am mostly feeling better and am probably on my way out of this particular episode, we decided against adding yet another medication. So I am not going back on the Trileptal, at least not for now. My neurologist may have another opinion on the matter, but for right now it is "wait and see" regarding what to do next. A lot of my issues wind up like this. Something weird happens, then it goes away and we wait to see if it happens again. If it DOES, then it becomes something for us to treat with medication. Right now it is feeling more and more like an extended—but isolated—event.

Looking back at all of last week, the storm metaphor is a good one. A week ago I had the worst problems with my diabetes insipidus: my nasal spray dosing was messed up and (at the worst of it) I experienced massive thirst while my body tanked past capacity with too much water. It was so bad. On top of this, I could not urinate even though I desperately wanted to. For a few hours, crying was the only way to rid my body of fluid. That was last Monday.

As that worked itself out over the following days, these brain melts showed up until they, too, faded yesterday and today. It was all a big storm. An uneducated guess tells me too much "stuff" [<-- technical terminology] was stuck in my body, in my blood, circulating and bloating me, the wrong salty food in my stomach, nothing getting properly eliminated, maybe not enough protein or potassium or nutrients or whatever. I was just too full of the wrong stuff and everything went haywire. I have to be so careful with what I do, straining, eating, drinking, timing doses of hormones ... and all craniopharyngioma patients know what I mean by this. When I get it wrong for too many days in a row my body just becomes a calamity. I can never forget my body is not like a regular person's anymore. I am artificially replacing my hormones now and my body does not react to situations and compensate for them. Ask my body to do too much without micromanaging my dosages properly and I WILL pay for it.

Anyway, it seems to be passing, finally. It was a week of hell, but this morning I rose from an extremely satisfying night of solid sleep, went into the bathroom and—before I was awake enough to realize the significance—I felt the strongest "breakthrough" I had felt in many weeks or months. My body let go of whatever it had been harboring and I could feel the change for the better starting right then.

Last week has been well-documented and, unless my neurologist insists on another MRI right now or a change in my medications, that will be that. I have written down everything I can remember about it (and about what I did and ate in the days leading up to it.) But if this happens again, that will be another story.

So that is a long way of saying nothing is going on, I don't really know what happened, and nothing is being done about it. But, somehow, I am satisfied with the result.

Thank you, everyone! <3

Storm Almost Over

After my last blog post went up, I had no idea of the outpouring of responses I would get. I have read and re-read my blog several times, and all I can say is it was very accurate, written "in the moment," trying to articulate exactly what was going on. I didn't stop to wonder what anyone else would think about it; my only goal was to document.

To update everyone since then, yesterday was a little better. I had anywhere from one to three small "brain melts" (which I now think is a perfect term for this) but the top of my head remained very sensitive and painful. This morning (after about eleven hours of sleep) I have had none of the brain melts, and the top of my head still has some tingle, but I wouldn't call it painful anymore. It sparkles like a foot waking up after you have slept on it wrong. A big storm has passed through my head and my intuition tells me this is close to the end of it.

I am seeing my primary care doctor this morning, and I may read him key portions of my blog entry because it details everything better than I could say otherwise. Based on how things go, I'm sure my neurologist and everyone else will get letters, and probably it will be time for a new MRI. My last one was six months ago. It was unchanged, and the plan then was to have the next one in a year unless anything strange happened. This passing storm may or may not mean I'm having a new MRI.

Some things to consider: my vision is fine. When my brain melts occur, I do not experience a dimness in my vision, and I don't see flashes of light. Also, I have spoken at length with a doctor friend, casually, and much of what I have gone through—especially the painful scalp—is consistent with the onset of migraines. Any of the signs of stroke or tumor regrowth along my optic nerves are just not there. My tongue moves fine and I can speak with clarity. I can see colors very well in both eyes. The brain melting for ten seconds is exceedingly weird, but besides this there are no red flags.

I have never had migraines before. I know a lot of craniopharyngioma patients develop them (and just about every other condition, har har) so an educated guess is that I will now be going down the path of managing migraines and figuring out what triggers them in my life.
When my more painful "brain shocks" were a problem (they started in 2010) I was put on Trileptal, an Epilepsy medication used to treat seizures. The brain shocks went away (mostly) and I stopped the Trileptal. Maybe now I will be going back on something like that, a medication that will dull the spiky nerve endings misfiring all over my messed-up brain. It makes sense.

I will write a short update after I see my doctor later this morning. Thank you to everyone who is following me down this bumpy road. You mean the world to me, seriously.

Saturday, March 17, 2012

Current Symptoms

I'm not doing very well. This is going to be a short update because it gives me a headache if I concentrate. Part of the purpose of this blog is to write down substantial changes in my symptoms for future reference, so here it is.

Thursday night, at a concert, I felt a sizable event inside my head. It's hard to describe, but it was like one of my "brain shocks" from before, but without any pain. Rather, half my head went completely numb, melting away, as if the left side of my brain vanished for a few seconds. My left ear could not hear anything and I felt the left side of my head just melt. It was so unnerving I froze, waiting for it to pass. It went away after ten seconds or so. It wasn't my imagination; my colleague next to me asked if everything was okay (even though I thought I had been disguising any problem.)

Friday (yesterday) started out okay, but by the time the afternoon rolled around my head pounded. The deaf-ear-left-brain-melting sensation occurred at least ten or fifteen more times. I don't know what caused them. I did nothing but rest all afternoon and evening. By the time I went to bed, another old symptom showed up: my scalp turned very sensitive to the touch. It tingled like a box of Pop Rocks sprinkled under the skin. I wanted to touch or scratch the top of my head, but it hurt to do so. It was like touching an open wound. The last time my scalp felt this way was the fall of 2009, right before they discovered my tumor. I'm not trying to sound the alarms here; I'm just trying to write down what I feel right now with as much accuracy as I can.

I fell fast asleep yesterday evening and slept straight through the night, which is uncommon for me. This morning—Saturday—my scalp is again extremely sensitive. I have a wool cap on because my head gets cold, but the occasional scratch of the wool against the crown of my head hurts. When getting Noah's morning pills, I had the worst "brain melt" yet (that's probably the term I will use). I had to steady myself for a few seconds because I thought I was about to pass out. No pain, just ... OhhhhhNooooooooooooooStoppppppPleasssssse ... and then it passed.

No, I am not going to drive a car today.

As I sit here and collect my thoughts, it just feels like a ton of pressure in my head. Too much pressure, and it hurts to stare at this screen anymore. Sorry for the typos or whatever. I'm going to put on an ice pack to see if it helps. I'm seeing my primary care doctor on Monday. My last MRI was six months ago. Peace out, friends and loved ones. I try to put on a good face when I can, but parts of this journey scare me.

Wednesday, March 14, 2012

Half Moon

Most nights I wake and rarely return to sleep. When I do, I rise staring first at the clock, so pleased to have made it past seven or half past, scratching my head first and then perking to the crack of coffee beans downstairs while I run my hand over the still-warm impression on the other side of the bed. This is the exception. Half the time I am up sometime around two, the incongruities of "breakthrough" another reminder what my kidneys would be without sour droplets of medicine sniffed to counteract the side condition I so tire of battling, Diabetes Insipidus.

[Editor's note: Yes, the patient Alexander Miller has been reading Flaubert. Please bear with us.]

This night, now half past three, I let Noah outside when he stirs, as confused as I regarding my lack of sleep despite my tiredness. As I wait for him to roam about the yard, tentatively stepping about the dewy blades of green, I cast my gaze upward to the half moon, noting the dim outline of the darkened semicircle while squinting at its brighter counterpart. My life, I mused. One day as such, then the next as the other. A dove with a shattered wing one sunrise, the first robin of spring the next. Weak, then hale.

The past two days underscored this juxtaposition. Monday I succumbed to tears, weeping openly by the kitchen sink. The water ran into the pots and flowed over the sides as Madame MJ came to me and held me in her arms. I thirsted not for water but for iced water, for ice, and then something bitter and cold, lemons, ice cold citrus fruit, anything to sate the sand on my tongue and the cake around my lips. Yet I could not drink for my body could not take one more drop in it! My insides slapped this way and that with enough fluid to hear it so. Yet the thirst never ceased.

The next morning—Tuesday—I was doctor to the previous day's patient. I rose a new man, eagerly pursuing chores, rid of imbalances that had previously set my mast atilt. I drank when thirsty, attended to private matters without incident, drank water again, attended to private matters again, and on the day went until Madame MJ commented I was in fine fettle, as sturdy as a Picardy farmhand!

One more sleepless morning, now Wednesday, my eyes ascend to the half moon again, looking to one side and then the other—dark, light, dark, light—my eyes resting back on the dark without fail. Another morning at the tipping point, my flesh a touch plump with fluid not yet spent yet my lips already salty, craving the glass of water I must consider carefully before swallowing. I ask myself every morning, "Which half of the moon today?"

Monday, March 12, 2012

Words and Music

It is strange how my passion for writing slips so easily between words and notes. I don't plan it, but when I feel like I am getting somewhere with either I walk away from one and pursue the other.

For the past month, I have spent most of my spare time composing. I have started in earnest on a new work but I can't talk about it yet. The concept of this large project has lit a fire under me, though. I have no time to write words.

It is the same when it is the other way around, too. Words excite me so much I wonder if I will ever compose another note.

I wonder if it is because my brain can't handle it. I don't mean how this relates to my tumor, but rather how I have felt my entire life. The card catalog of a memory I have, earmarking every day in a way I can zoom back and access just about any point in my life. When I compose or write, the notes or phrases get etched inside me so deeply I lose perspective. I feel physical pain—headaches—when it gets to be too much with the endless patterns of notes in my head never stopping.

I believe I use written words to stop the music's repetition, and I savor the refreshing quality of prose when I come back to it. Likewise (and to a lesser extent) I go back to composing music when sentences I have written reach the stage where they repeat and repeat thousands of times in my head.

Honestly, this is what it feels like. I delve deeply into something until I am almost crazy, then I take an escape hatch to a parallel world. It is the only way I can cope.

Friday, February 17, 2012

More Brain Shocks

My brain shocks are back. Last night I had about three small ones, and the night before I had two medium jolts (about a 6 on a scale of 1 to 10, representing the range I know). They are more unsettling than they are painful. It feels like something terrible is about to happen but it stops just short of that. It's like AAARRGH ... don't ... move ... don't ... move ... and then it goes away.

My dizziness is about the same, and it comes and goes. This week my orchestra is playing the live soundtrack to showings of the final "Lord of the Rings" movie, so I continue to sort out my headaches, brain shocks and dizziness to the sound effects of orc slaughter on the enormous screen overhead.

In my craniopharyngioma support group I have now met others who have these symptoms, along with my "tingly" scalp. With much interest, I have met an adult who experiences not only brain shocks but a variation of the "complex auditory auras" that plagued me in the summer of 2010. For those who have not read this before, here it is. I used to "hear" music playing right in the room with me when there was no music playing. This other "cranio" (as we call one another) "hears" her cell phone ring many minutes later, again, after it rings the first time, like a delayed echo.

To be clear, when I write "hear" it is not the same as when you get a song stuck in your head. I mean "hear" in a literal sense. You hear things exactly as you would if it were real. You don't answer the phone the first time, and when it rings again you reach for it only to discover it has not rung the second time at all. You were only "hearing" it the second time. An auditory aura.

I bet in 100 years these symptoms will be explained (or cured) but for now we are an odd bunch, experiencing strange side effects and trying to put them into words.

Monday, February 6, 2012

A First Time for Everything

I must have slept at least fourteen out of the past eighteen hours. I am still dizzy as I wake up, now for the fifth day in a row. I will be on the phone today with my endocrinologist, maybe going in for tests. In the meantime, here is an old memory I have been working on for a while about another dizzy time in my life, almost thirty years ago:

After I finished eighth grade in 1982, I spent the next three summers in northern Michigan studying oboe at the National Music Camp, Interlochen. I had yet to know music was my true calling and I thought of Interlochen as a fun diversion. It was my first time away from my parents. There is a first time for everything.

I did not have a girlfriend but I knew what one was. During the regular school year I attended Cranbrook, a private all-boys school. Girl sightings were rare. The campus of Kingswood, our sister school, was adjacent to us, but the only times we saw actual females were band practice and school dances.

During the first week at Interlochen a violinist my age brushed past me. She was so close I could smell her. I was seated, polishing my oboe clean. As she passed, she dragged her index finger across my knee. She whispered, "I think you're the most talented one here." She turned her head, batted her eyelashes twice more and swiveled the rest of the way to her chair.

I thought she liked me.

Her name was Darlene. She was willowy, freckled, strawberry blonde with a boyish cut, and her smile radiated a natural happiness. She was pretty. She was from Texas and she spoke with a comfortable drawl. She was the kind of girl I imagined spent free time amongst sunny haystacks, chewing sweet ends of long grasses and tying her plaid shirt into knots.

At the end of that rehearsal, I watched her pack up and wander to the corner of the stage. She pointed at me and curled her finger in a beckoning fashion.

I decided to follow her.

She took my hand and led me to the back of the building, shaded by fir trees. She positioned me with my back to the concrete wall. Suddenly, I remembered the girl I had held hands with back home the day before leaving—the girl to whom I had, like a valiant knight, sworn to “wait for her” during the long, hot summer—but that would have to stay in a corner of my mind for now. There is a first time for everything, I thought, and this would be my first kiss. Darlene looked both directions. All clear. She lowered her eyelids to half-staff. Prrrrrooooowww! The air thickened while colors around me dimmed to a warm pink. As she closed in her face went fuzzy. I remember one thing.


Not her. Me. I had eaten a stack of garlic toast at the cafeteria and I had not brushed my teeth. I fought to keep my mouth closed but it didn't matter because she was a light kisser.

As quickly as we had started, Darlene stopped. She looked at her watch.

"Want to do something together?" she asked.

"Sure!" I said, still stung by the novelty I had a girlfriend. "The music library is open. We could listen to a whole symphony."

"We could also go to the Melody Freeze for ice cream." Prrrrrooooooww!

I decided I wanted to go to the Melody Freeze for ice cream.

Back at my cabin I lay on my cot, hands contentedly behind my head, daydreaming of Darlene and how she was perfect. I tipped my head off the top bunk to eavesdrop about another boy in my cabin. He was getting lucky with a girl, too. She also played the violin. She was also from Texas.

What a coincidence, I thought.

Every time I saw Darlene for the next week, she pulled me into side corridors, pulled me to the sides of buildings, pulled me behind trees so we could kiss for a few minutes. The other boy in my cabin played in a different orchestra. When his orchestra rehearsed, Darlene's hand slipped easily into mine and we walked in the open with her head leaning into my arm.

A week later our counselors scheduled a "co-rec" between my cabin and Darlene's cabin. I was excited but Darlene was nervous. When our cabins met by a fire to roast s'mores, Darlene barely moved or said anything. My cabin-mate with the girlfriend from Texas stayed close to me for some reason. Darlene never changed her expression all night from stiff and wide-eyed, like a frozen goat.

Later in the summer, when this doomed love triangle collapsed into its own web of lies, my cabin-mate and I compared stories, timelines and alibis from the previous weeks. "That co-rec," my friend said, digging into a bag of potato chips and offering me one, "was what Darlene called"—he did an impression of her drawly voice—"'Like, the most intense moment of my life so far.'"

Before things soured, Darlene and I attended a live concert featuring Ella Fitzgerald. Interlochen was (and still is) a goldmine for young music students to see famous guest artists up close. In the summers I attended, I heard Count Basie, Benny Goodman, Wynton Marsalis, the Cleveland Orchestra, Al Hirt, Pete Fountain and Dave Brubeck perform on the same stage we used every day.

Before we entered the open-air structure that was Kresge Auditorium, Darlene panicked for a moment when she saw someone behind me and—instead of going in—she pulled me behind a tree. "Let's stay outside and listen," she said. "Then we didn't need tickets," I said. "Don't worry about that," she replied. Prrrroooooww!

I decided we would stay outside.

On the lawn we held hands, kissed, danced and twirled about as only a couple of awkward adolescents could while Ella Fitzgerald's voice slipped out the sides of the auditorium and mixed with the leaves in the trees before disappearing into the night sky. In its own innocent way it was—and always will be—one of the most romantic nights of my life.

"Go get us some ice cream," she said when the concert was over.


I went to the Melody Freeze, ordered one vanilla cone with sprinkles for her and one vanilla-chocolate twist for me. I wended my way through the crowd back to the auditorium with ice cream dripping through my fingers in the warm night. She was not where I left her so I went looking.

Around a corner not far away I found her pinning my cabin-mate against the concrete wall.

They were kissing.

There have been a handful of moments in my life where I have felt my heart literally crush apart. This was the first, and there is a first time for everything. A moment later I felt no pain—no feeling at all, actually—and I walked to the nearest trashcan. I dropped both ice creams in, marched back to my cabin, climbed up to my cot, pulled the covers over my head and willed myself to sleep, the melted ice cream turning hard and sticky between my fingers.

The next day Darlene came. She said, "You didn't find me after the concert."

I had no reply.

"Come with me," she said. "Come on!"

I didn't feel anything, but I followed. She fell in step and slipped her hand into mine. I stiffened. I didn't want her touching me. I thought she was dirty.

She ducked into to a building rarely monitored by the counselors that was long and straight.

"Let's go downstairs," she said.

“We’re not allowed down there!”

“Just follow me.”

"What are we going to do?"

"Come quickly!"

I followed.

The downstairs was a long, empty cavern with numerous practice rooms running up and down either side. She took my hand and led me to the empty room in the far corner. She closed the door and faced me with a wicked grin that continued to widen with each passing moment.


I felt nothing.

Prrrroooooooowwwwwwww, rrrrrooooowwwowwwwwww!


"Oh come on," she said, coming to me. She kissed my cheek. Then she kissed me on the lips, slowly. I felt better and kissed her back.

"Eeeeuww!" she blurted and pushed me back. "Why would you do that to me?"


"I know you saw us together last night! I know you saw us!"

"Saw what?" I asked.

"You saw us kissing!" she hissed.

"Who kissing?"


"Oh …"

"Oh that's right!" she blurted. "Why would you come on to me when you saw me kiss someone else?"

"I … I … I …"

"What kind of girl do you think I am? Some kind of slut? You jerk me around for your amusement?" She burst into a fountain of tears.

I couldn't believe I had caused this. I approached her.


I backed off.

During the next hour, I endured what I could only have described back then as psychological torture. I slumped in a corner, eyes wet, while Darlene paced back and forth, turning the last word of my every sentence into a question. If I said, "I'm sorry, I thought—", Darlene would study me, glower and ask coolly, "Thought? Why would you think like that? Thought?" I would respond, "I don't know! I'm just trying to make … to understand …" Darlene: "Understand? Understand what?" She screwed up her face, turned her palms inward and stared at the ceiling. "What are you trying to understand?" Me: "This whole situation." Darlene, screaming: "What do you mean by this 'situation'? What kind of ‘situation’ are you talking about?"

When there was nothing else to say, the silence was thick and the room exuded a rotten, dead air. We both felt like when you pull the plug and let all the water drain from the bathtub.

"Well," she rasped, "I guess that's all there is to say." She was in the opposite corner, arms crossed and eyes wet with real tears.

She left.

At the end of camp, when I was interested in another girl (still keeping the girl at home in mind also, valiant knight e’er was I) there was one final evening where all students gathered in the plaza between the Melody Freeze and Kresge Auditorium. Time to say goodbye.

I sat on a bench with my new girlfriend—a brunette, I think—talking to her about football while she stared off somewhere. We hadn't done anything yet, but my plan was to hug her goodbye and to really milk that hug. Then I would get through the school year writing letters to her about football, stoking the embers of our mutual attraction until we could resume our relationship the next summer where my goal would be to hold her hand.

While we talked, I spotted Darlene a short way away chatting with a group of eager boys. She was the center of attention as always, looking so pretty, laughing and flashing her smile that never failed to radiate natural happiness.

I studied her techniques from afar. There was the "Moi?" look, where she dipped her chin, moved her head aft and pointed at her chest. This was followed by the "Oh-you're-joking" laugh and a playful slap on a boy's shoulder. There was the wide-eyed "No … WAY!" exclamation followed by the "you-just-blew-my-mind" moment of stasis with her mouth agape. During the summer she demonstrated an impressive array of powers as if she were a novice wizard honing newfound abilities.

I asked my new girlfriend, "Would you mind terribly if I asked you to wait for a moment?" (More accurately, I probably mumbled, "Hang on a sec.")

I walked to Darlene and caught her attention as she finished hugging one boy. She surprised me with an expression I had never seen before: Her face melted compassionately. She tilted her head and put her hand sweetly on my face. This seemed at once genuine and contrived. I imagined her Texas drawl to be something rather European and Nineteenth Century: "Oh dear, dearest one. How did we drift apart?" She hugged me, touched her hand to my face again, and went on to the next boy.

I returned to the bench and noticed my new girlfriend gripping the seat, almost crushing the wooden slats with her bare hands. She softly hissed one word, "Darlene,” before the first tentative touch of my own hand atop hers melted the sting from her grip.

Sunday, February 5, 2012

Dizzy, Dizzy

Hello, everyone. I wanted to write a quick update about the past few days because I am getting a lot of questions from those who have witnessed me. I don't have the fortitude to write one of my normal entries, so I'll list the facts.

The past three days I have been very dizzy. I feel fine if I am lying down or sitting still, but moving around or tilting side-to-side makes me lose all sense of orientation. I can hear fine, but I know I should get my ears checked for obvious reasons.

A likely culprit (hoping it has nothing to do with the tumor) is my diabetes insipidus. For the past week, I have had both morning concerts and evening rehearsals or concerts. This means I have needed to dovetail my desmopressin nasal spray (that prevents massive fluid loss). So I have missed out on the daily cleansing of "breakthrough urination."

In addition, when I could finally have breakthroughs on Friday and Saturday, I couldn't go. I had the overwhelming urge to urinate but nothing would come out, just a few agonizing drips at a time. I am sure my body's sodium and potassium levels are all mixed up as a result. I am thirsty, but then water repulses me a moment later. Grapefruit juice works best. I go as best as I can, then return to the couch and cover myself with an electric blanket because I am chilled. All day Friday and Saturday I was so tired, sleeping most of the day, resting for the concerts.

The other weird thing is my left leg which aches. Normally I feel my legs buzz when I have reached a full breakthrough (which is the cue to take my nasal spray) but I haven't felt that. There is a shooting pain (mild) that starts inside my left leg and runs up my left side to the middle of my back on my left side. I have tried the stretches, but that whole side of me is throbbing.

Most of all, it is the extreme dizziness. Despite this, though, I have been able to play concerts. (We were in the pit this week for Mozart's Magic Flute, and I suppose I came to work because I had less to worry about regarding appearances. If we were up on the stage I might have called in sick.) After last night's opera, MJ and I came home and, while walking in to see Noah, I thought, "I feel drunk." I had the coordination of a drunk, but with mental focus and alertness. It was so strange. My feet moved like sandbags and I bumped into doorways.

This morning, as I wake up, my ears ring as always, my left side still aches, but my dizziness has subsided a little after a good night's sleep, but it is still there. If I feel worse throughout the day I will call a doctor, and on Monday I will call my endocrinologist to report all this. My eyesight, best as I can tell, is fine.

Thursday, February 2, 2012

Early Bog #11 (The Dream)

One of my last blogs from two years ago before I switched to my own website here at Husband Amused. I have a feeling this may be correlated to the days my tumor began expanding again, but that is just a guess. This is kind of trippy:

FRIDAY, OCTOBER 16, 2009 9:25 AM, EDT

I woke at 4:30am, knew it was too early, then proceeded to have a very unusual morning unfold. I lay awake, trying to put more than one thought together at a time. This has been hard: multi-thinking. Since the surgery I can do one thing and then do another. But I can’t comprehend two things at once unless I write it on a list and do them sequentially: one, two, three, four, etc..

Why I like mornings, I guess. The clean slate. Every action is an unadorned etching you can take time with by itself until you do the next one. I used to enjoy this as a luxury, but right now it is a necessity. Noah pills. Noah outside. Noah inside. Paper.

This morning, trying to mull over several things at the same time, I fell into a deep dream. I was walking in a garden with flowering plants and trees. Vegetables grew too, everywhere. But the vegetables, when I approached them, were in fact words hanging off the plants. I picked them, pulled them apart, rearranged the letters, made sentences. I could hold them in front of me and they would stay in mid-air as I reached for another word to go with it.

In the distance, I heard the blip of musical notes, quick arpeggios. D minor, staccato, higher pitches. I went to hear where the notes came from and the sound emanated from another plant, a giant hot pepper plant larger than I had ever seen before. I jangled the peppers and they made the sound again, those beautiful arpeggios as they touched one another. I tried jangling others of a different size and they added new notes, new colors (G-sharp alternating with A) to the already twinkling sonorities of D minor.

Then I felt a bass note. A benevolent D-natural in the grass that vibrated the skin underneath my feet, one note held out forever, sustained by the vibrating blades of grass as the air passed gently between them.

Things turned dark. All color faded away. The sky dimmed and I looked up to the clouds. The sky turned into a movie screen and someone said, “This is a film reel with scenes of rockets exploding.” I watched the blurry gray images of the clouds, but I saw nothing in them. I was holding my oboe now, and my oboe, on its own, rose into the air. My arms were fully outstretched. My own grasp of it and bodily weight prevented the oboe from flying away. But by continuing to hang on, it pulled me into the sky. My oboe was the rocket, and I felt myself tear apart from my physical body with a violent SNAP! as I followed it upward.

I was in my bedroom now, having floated up to the ceiling, curled in the top far corner of the room, my arms clutching my oboe to keep me flying. It was an unusual sensation I have experienced a few times in my life, this out-of-body feeling that is so real. I was fully awake, looking down at my bed and I could see myself lying there. MJ was gently shaking me because I was shrieking with some kind of nightmare. It looked like frames of a movie were stuck for a second, then they jolted forward to the next second, then the next. Very angular and raw. Film jamming and tearing in the projector, spitting through violently. Something terrible was happening down there. MJ was horrified, screaming, and I wanted to get back. With an audible SNAP! I flew myself back inside my body.

I saw a flash of my surgery. Metal instruments. Knives. Metal probing deep inside my head. Male voices: “In?” “Yeah, good.” By God, it was real. A memory. I saw it. It was real.

I felt MJ’s hand rocking my shoulder, soothing me out of my nightmare. I stirred briefly but stayed asleep. I woke a few minutes later, still feeling MJ’s hand holding me. I breathed in and out.

I said, “Love you.”

I slept some more, dreaming of musical notes. Harmonies. Polyrhythms. I was composing.

When I woke, MJ was out of bed. I leaned up to see the time. In my glance at the digital clock I caught the exact moment it flicked from 7:59am to 8:00am.

Monday, January 30, 2012

Early Blogs #10 & #11 (You Gotta Go When You Gotta Go)

Here are two more of my earliest blogs from two years ago, ten days after my first brain surgery:


7:30am, Thursday morning. I’ve gone on a few tangents and it’s time for another funny hospital story. In a minute.

I woke up around 6am, and came downstairs. Even Noah, who usually skitters up to go outside the moment I wake, lay motionless in the front hall. He tipped his head briefly as I passed, as if to say, “Are you kidding me? Why so early?” He dropped his head back, groaned, but was up following me in a few minutes.

I opened the front door, retrieved the papers (NYT, WSJ) and there was also a package on the doorstep, a medium cardboard box chilled by the night air. It was a gift box from family, filled with favorite jams, grilling sauces and dried cherries from my favorite purveyor up north. (If you are family and reading this, this does NOT mean you have to send me something now. Seriously. Put away the credit card.) I got things SET for the morning, what I love about first things in the morning, so orderly. This morning I felt normal, not dizzy once.

Kettle on. Noah pills. Noah Kong. Noah outside. Noah inside. Noah banana. Noah rests. Open papers. WSJ to MJ’s spot, topped with NYT “Thursday Styles” section. Open NYT to Arts section. Cut out KenKen puzzle for MJ. Crossword folded precisely for me. Papers down, laptop open. Water boiling. Tea. Sit. Begin crossword. MJ’s footsteps upstairs. Perfect.

This morning my stitches come out from my spinal tap, so I’ll be leaving to see the surgeon in a few minutes. It makes me think about hospital life and things we take for granted at home. Simple things you can do yourself. I have a funny story to share about this, and I’ll finish and post it when I get back from my visit with the surgeon this morning.


Back from getting my stitches out. (MJ drove me.) This includes my funny hospital story, but first this. It was nice going through town, seeing the leaves beginning to change colors. Since the tumor came out, my senses are heightened. I am color-blind (red-green) but I still “see” colors, especially when they are not too mixed up. Colors pop now, my eyesight sharp as ever. Ten days ago I was strapped to an operating table and pieces of metal were going inside my head. The turnaround is amazing.

My sense of smell is heightened too. It is so magnified I wonder if I ever had olfactory senses as good as this. Everything smells sweet. I’ll never know how long I had that golf ball of tissue hogging up space behind my sinus cavity. For years, perhaps, something had stood in the way between a nice aroma and my brain. I love a small glass of Vintage Port now after dinner, just smelling the nuances endlessly, hardly needing to sip it. When I was building my wine cellar I would on occasion buy a few bottles of good Ports as they became available in so-called “vintage” years. It seemed prudent; Port was out of favor, dirt-cheap, took forever to age (no danger of them going bad), and the experts raved about the quality. It was a no-brainer even though I wasn’t sure I liked them that much. But I accumulated a small collection over time, shrewdly, just in case, buying the very best bottles at just the right prices. Though in the past I have tasted great Ports with my wine friends, I have never until now appreciated them so much. In a way, like the peppers I grow, a great bottle of Vintage Port is yours; it will contain all the sensations of things you remember while the wine was aging along with you in the bottle.

My hearing is good too. No ringing anymore. As I write this, I can hear the strains of the “God Music” movement from George Crumb’s “Black Angels” string quartet MJ is rehearsing upstairs with colleagues. In this part of the piece, an ethereal cello solo floats quietly over bowed crystal glasses providing a celestial hum. I now realize this is the otherworldly sound I was unconsciously thinking of when I wrote the piece in memory of my mother for her memorial service. In my piece, “Memory Box,” MJ and I were stationed on opposite sides of the stage, each of us running our wet fingers atop crystal glasses as percussionists on stage played groups of sounds representing fleeting moments I remembered about her, the most I could come up with at the time.

I promised a funny hospital story, so here it is:

In the critical care unit, I was in bed. The entire time I was attached to wires and tubes, blood pressure cuffs, catheters. In the critical care unit, make no mistake: you are ATTACHED. It seemed a machine beeped every time I moved. They wanted me lying there like a corpse, best I could figure.

My constant urination, thankfully, was no problem. In fact, it was liberating to have a catheter. My tumor removal led to a lot of bodily fluid upheaval and they needed to keep precise track. Every hour a nurse came in, emptied my bag of urine and noted the amount as well as my spinal fluid level and how many glasses of liquid I had consumed. They made constant adjustments to the bags, my bed level, and a column manometer.

But the thing about a catheter is, while freeing, it takes away your sense of control. Urine simply drains away. You hear this whooshing sound every once in a while, but you never experience the variation of the (probably male) Cartesian moment where you declare, “I go, therefore I am.”

After a few days of this odd freedom, you remember there’s also a number two. Seriously, I had forgotten all about that part. In the beginning I ate sparingly, and it wasn’t until Thursday that I wondered what I might do about a bowel movement. Thursday morning (the third day) a lot of things changed: my sinus packing was removed. I could BREATHE. I was alive again. After a mid-afternoon Dilaudid nap I woke up famished. Ravenous, actually. I grabbed the phone and ordered cheese tortellini with Alfredo sauce and a cherry cheesecake. Friends were coming to see me in a few minutes and I needed energy. Still needing to lie horizontal, MJ fed me one small piece of the tortellini at a time. But halfway through the plate, I didn’t want anymore. Things were moving and shifting inside me. I asked for a bite of the cheesecake, thinking it might help. Nope.

I had to go right to the bathroom. But I was tethered up the wazoo to my bed. The nurse looked over my directions and said I was not allowed out of bed yet. She could bring a bedpan, and maybe I could squat? My friends were halfway up the elevator. She gave me the bedpan and I just vomited in it.

A little while later they unhooked me while my friends were still there. I tried for a while, but the moment was gone. They put me back in bed, shot me up with more drugs and I slept until I woke in time for shift change.

Shift change at the new hospital wing (where I was lucky to be) was always a model of professionalism. The outgoing nurse stands face-to-face with the incoming nurse, both with laptops sitting atop lecterns, as if ready to debate one another. Like co-pilots going over a pre-flight checklist, they methodically go over my case bit by bit. It was always a perfect handoff as far as I could tell. Notes were scribbled and erased on my bulletin board. Then I noticed a new space near the bottom, previously unfilled:

Goal: [Arrow up symbol]

When the shift change was complete, I spoke to my new nurses for the night (you always have two in critical care, I think). Primarily I would be dealing with Heather, a sweet ingénue. She reminded me of the character Pam from “The Office,” especially her voice, and she nodded her head understandingly at everything I said, sometimes before I had said anything.

And then I met my other nurse, Sylvester. He was a strong black man. He seemed—and pardon me for saying this—just like the kind of stock character inserted into a movie who served the sole purpose in the script of helping a white person get over self-esteem issues. Before any introductions, he spied the up-arrow written in the “Goal” line on my wall chart. He made his eyes into perfect circles and pointed straight at me.

“We gonna get you UP. First you SIT up for a while. Then we walk to the DOOR and back. Later we’ll walk INTO the hall. Later still we’ll walk all the way to the END of the hall and back. Okay?”

“Okay,” I said.

He disappeared and I resumed my chat with Heather. It came up that my job was to play oboe with the Grand Rapids Symphony.

“Oh my GOD!” she said. “I LOVED going to the symphony when I was a student.”

“The Student Passport Program?” I asked her.

“YES!” she said. “It was so GREAT! All my friends too.” She rattled off the selling points for me: “Student ID. Best available seat before curtain. Only five bucks!”

“And just who do you think came up with that brilliant idea?” I pointed at myself and cleared my throat triumphantly.

“No WAY!”

“Absolutely,” I said.

In fact, I was lying. I am a zealous believer in this program—I speak of it often—but I didn’t invent it. I lied because she was going to make judgment calls on my drugs all night and I wanted her under my control.

She also saw I had a crossword next to my bed.

“You can DO those?”

“I’ve done every New York Times and Wall Street Journal crossword since 2005,” I said. (This was true.)

“I’ve tried, but I have never finished even one. You can do the New York Times? Those are the hardest!”

“I can, but you can too,” I said. “Start with a Monday. Spend all week on it. Use Google. You’ll finish. But only do the Monday ones for a while. I know you’ll be able to do it.”

“Really? Me?”

“Of course,” I said.


“Say, how am I doing on drugs right now?”

She looked at her screen. “Oh, uh ... you can have a Norco now. Two if you want. And”—her eyes scrolled down a bit more—“I guess as much Dilaudid injections as you want to fill in the cracks." She sort of shrugged. "That’s what it says. Need anything?”

“Mmm, I’ll start with a Norco. Then let's add little squirts of Dilaudid here and there to keep the rabbit holes open.”

“Okay.” She opened the safe, took a pill out of the foil casing and brought it to me with a new cup of water.


Sylvester came back, saw I was lying down, and left.

I thought for a while about the rapid changes in my body today and said to Heather, “You know, if I’m allowed out of bed, I’d really love to be in the bathroom by myself for 30 minutes. No pressure.”

I arranged myself on the side of the bed, ready for help standing up. Heather did all the clamping off of tubes and wires. Sylvester came into the room to escort me to the toilet. Heather's only job, apparently, was to trail behind me. Mind you, after three nights in bed, my gown was totally open in back, but I’m sure it was nothing new to anyone in that profession.

As Sylvester sat me over the porcelain, he arranged a mini table in front of me on which he placed a newspaper, a hand towel, and a puke bucket. He also hooked my hand to the emergency pull string.

"I'm all set," I said. "Thanks!"

"Water!" he said. "You'll need a COOL glass of ICE water at the right moment!" He disappeared, leaving the light on and the door to my bathroom wide open, out of my reach.

He didn't come back. I didn't know what to do. Five or ten minutes later, still trapped over the bowl, I spoke a soft, "Hello?" Then I said, "Hel-loooo?" more loudly.

I heard Heather's timid voice reply, "Yes?" (Was she sitting in the room the whole %@#!$%* time?)

"Uh, Sylvester went off to get me some ice water and I don't know where he went. Can you just pour me a glass of water from the tap, then CLOSE THE DOOR so I know I'll have total privacy for a while? For like a long, long while?"

"Oh, sure," she said. I heard the tap running in my room. Her hand reached inside. I grabbed the styrofoam cup. She clicked the door closed.

Peace. I began reading the New York Times. Anything would have sufficed, even the phone book. I relaxed. My own private space.

The door swung open. It was Sylvester. "I almost forgot your water, man! Here's your . . . hey! You got a water!"

"Yes," I said.

"You want me to take that one away and leave this one?"

"No, that's fine. Just leave them both. Everything is perfect. Perfect, perfect. Thank you."

He took a step back and seemed to assess my vulnerability for the first time. "Ohhhh, I see. Awright. I got you.” He leaned in conspiratorially. “Don't you worry. I got you covered. I'll be right OUT-SIDE. No intruders now, heh HEH! You have yourself some PRIVATE time here, heh HEH!"

I said, "Just a closed door. Just silence. Thank you so much." I smiled and closed my eyes in peace. I was so ready to go number two so naturally right then. I was almost ready.

Sylvester added, "You know, and don’t you worry about that catheter, about that tube hangin' all over the place. It may go this way and that, but don't you go feelin’ like you peein' all over the place. Heh HEH! It could wrap around your leg like some barbershop pole and make no difference!” He snickered once more—“Heh HEH!” and closed the door.

Now I had that to think about. The barbershop pole around my leg dripping urine. My strategy for number two has always been consciously to release number one first, then number two. In order, by my command. With the catheter, I had no way to will anything to be so.

I heard a whisper. "Hey Al . . . Al . . . AL!!" It was Sylvester from the other side of the door.


“All clear. Just you and me. Do your thing. Nothin’ but time.”

It was never going to end. I finished the article in the New York Times, and, true to his word, there was nothing but a long, respectful silence from then on. But I never knew if I was alone. The only way to confirm this would be to whisper out the door, but that might strike up another conversation with Bagger Vance out there. I tried drinking the water. Nothing.

I was out of options. I stood up, tied my gown, took my newspaper, flushed the toilet, and pulled the emergency call string.

No response.

I used the handrail to guide me in my dizziness to the door. I opened it. It was dark and no one was on the other side. It was four feet of open floor space to my hospital bed. I steadied my hand on the wheeled IV pole, pressed it into the ground for stability, and took the few steps to get me to bed. I made it. A moment later, Heather came into the room.

“You made it back to bed!”

“Yes,” I said.

She rubbed one index finger over the other. “I’ll give you a symbolic bad, bad, mister!” she scolded. “You shouldn’t do that by yourself.”


“Any luck?”

“No, not this time. But thanks for helping.”

She hooked up all my tubes again. “Ready for sleep?”


She walked to the cabinet and opened the safe. She withdrew another Norco pill and a syringe filled with Dilaudid. The room was dark and I could see her glistening eyes pierce into me as she approached. She was no ingénue anymore, I can tell you. This was an adult woman, a professional, trained nurse with intent. As she traversed the darkness of the room I imagined hearing only the click-click-click of her heels as she approached. High heels. I drank down the pill. She injected my IV and soon I felt the cool liquid spread up my right arm. In a moment, the drug was in my brain and the walls melted while electric hydrangeas bloomed. I could have gone to the bathroom right then, perhaps, but I fell asleep.

Thursday, January 26, 2012

Early Blog #9 (Spirit Animals)

This is one more blog from two years ago, in the weeks after my first brain surgery:


Wednesday morning, nine days after brain surgery. I woke up this morning around my usual time, just after 5am. I felt the need to get up, go downstairs, see to Noah, putter around, get a few things done. MJ was reading in bed and sensed me stirring.

“Stay,” she said. She clicked off her reading light and curled up next to me.


She was right. As I lay flat on my back, awake, I felt new equilibriums shifting in my head, getting bearings as my mind floated thoughts in the eddies of the new spinal fluid in my head. I thought about things. She fell asleep under my arm and I lay awake for another hour, just thinking. It was nice. I needed time like this before jumping out of bed.

MJ is the guardian of my solitude, something I consider the most important thing in a marriage. Honesty and trust come before true love, actually, and these are all built on the foundation that one spouse will basically work to protect the other. It’s such a simple thing, but so many people get it wrong: the notion that you have the responsibility to watch over your spouse and that you can accept being watched over as well.

I have felt this kind of kinship with spirit animals too and WAIT! . . . if you are going to stop reading because I wrote that, please give me a chance.

At key times in my life I have experienced unbelievable moments with animals that appear to watch over me, completely out of a normal context. Something in the natural order of things puts unusual wild animals in my path at turning points in my life.

Growing up, we had a wood statue of Francis of Assisi, known as the patron saint of animals, inside our house. My mother talked to me about St. Francis often, about how much animals meant. The statue must have been about my height as a boy, maybe three or four feet tall. The wood was old, cracked, and much of the paint had chipped off. He stood indoors, palms facing up, and various wooden animals were attached to him. We were moving to different countries all the time, packing him up and unpacking him, and while living in Caracas I think one of the birds on his hand broke off so just a nail protruded up from his palm, making me think of stories I heard in school about Christ and crucifixion.

Living in Melbourne once when I was about seven or eight, my father took us on a day trip to Kangaroo Island. I sat on a log there, eating a piece of bread, thinking about an instrument I had just taken up a few days ago — the oboe. I liked playing it but thought it might have been a mistake because it sounded so terrible. I only knew three notes (G, A, and B, the left hand notes) and the low G squawked every time I tried it. I knew special arrangements had been made with the school to get this oboe for me and, even at that young age, I felt shouldered with a responsibility not to give up right away and see things through for a while.

Wild kangaroos approached me. They wanted the bread in my hand. I waved it in front of them. Several more gathered around, including a young mother with a joey poking his head out of her pouch. I moved my hands back and forth the way I imagined a conductor would and all the kangaroo’s heads followed the bread. I thought it could be fun to be one of those kangaroos, to sway in unison, just following a piece of bread perfectly. I tore the bread into pieces and fed the kangaroos. Before leaving, one stopped, looked straight into me, and went away.

Unbeknownst to me, my father had been snapping photos of this. This picture of me conducting kangaroos at the moment I decided to become a musician has been published in newspapers, and I have it framed in my house. I don’t recognize the boy in the photo anymore, but I know it is me.

Other times, animals appear just as I make a change in the direction of my life. They arrive out of the blue, like punctuation marks, a reminder from the natural world that a certain decision has been made. When my first marriage was breaking up, I knew it was over when a fox curled up and spent the night on my front porch. It was Christmas morning, and I went outside to fetch the paper when the fox was just there. It startled me. The fox woke up, looked straight into me, then trotted away into the woods across the street.

I thought maybe the fox was sick, so I dialed the number for the local ASPCA.

“You saw a fox?” they asked.


“You live next to woods?”


“Okay . . .”

I said, “It was curled up, sleeping on my doorstep. Maybe it needs something. Tuna fish?”

“The fox is not there anymore?”


The person answering the phone was not happy. She said, “I’ll make a note you saw a fox.”

“Okay,” I said, then hung up. It was another sign. The way the fox looked straight into me before leaving was the same as the kangaroo. It said (to me), “You’ve thought about this long enough. You know what you’ve got to do.”

Another time more recently, a few months after my mother died, I was driving home from the airport after my first solo flight in an airplane. Aviation was a fantastic new passion of mine, a way to believe in myself again, and I was on such a high. I flew a plane by myself! As I turned the corner to come the final mile to my house, a fox ran across the road in front of the car, and I had to hit the brakes. The fox stopped in the middle of the road, looked straight into me, and continued on. I had not seen a fox anywhere since that time ten years earlier.

Even more recently than that, this past Christmas MJ and I spent a quiet few days at our cottage on the lake. It is so cold and desolate up there in the winter, such a wonderful place to be alone with your thoughts. This might have been the first few normal mornings where we were alone, taking in the serenity around us. I thought about things, about turning points in my life, and what things would be like going forward now.

Running across the ice out the window I spied a pair of coyotes, so common in the area you hear them howl at night. I heard them all the time but had yet to see one. I checked the cottage security webcams for an instant replay, but the image was grainy. A few more times, this pair of coyotes ran by, about every half-hour or so, but they were too far away to get a good look. Finally, I sat in a chair looking out the window with a pair of binoculars. On their next pass, I focused on a face. At this moment it stopped running and looked straight into my lens. Now I could see vividly: the red fur and pointed ears standing out against the bright white of the ice. This was no coyote.

It was a fox. Actually, it was two foxes now. They stopped, looked directly at me, and left. I have not seen any since.

It hasn’t always been foxes. After my recent series of eight MRIs, which took almost four hours in the middle of the night, I drove home, my body sore from lying motionless that long. Driving through the suburbs of East Grand Rapids in the still of the night, my headlights shone upon a white flicker bobbing in the road in front of me. A tail? I came up to it fast and I had to hit the brakes.

It was a doe, a beautiful one. In East Grand Rapids, no less. As my car came to a complete halt, the doe stopped, looked straight at me, and walked casually into someone’s yard, miles and miles from any woods it could call home. It looked into me again, with kindness I felt. Before the MRI results came back a few hours later, I already knew I had a brain tumor. I just knew it right then.

Finally, at the beginning of this past summer, I had decided to stop writing a piece of music I could not finish. It was my first major commission outside of my home orchestra, and (perhaps already suffering from this tumor squishing my pituitary gland down to nothing) I could not go on with it anymore. I wasn’t a composer, and maybe I never was one.

I was at our cottage with MJ, sitting on the porch with a glass of wine. I said, “I’m going to write that email. I’m done. I don’t know what’s wrong with me, but I can’t put the big pieces together. My head just doesn’t work like that anymore.”

She knew this had been torturing me for months, and she was more relieved than me to finally hear these words.

“Okay,” she said sweetly. She patted my knee and went inside. As the screen door swung shut, I sat alone outside with the finality of not being a composer ever again. I stared at the sky.

A bald eagle flew over my head, one with full adult plumage. Bright white head, long white tail feathers. Beautiful. It flew so close I felt I could touch it if I reached high enough. There is a family of bald eagles that live nearby, and the adults and the three juveniles often patrol the area. So I had seen them before, but never an adult so close like this, just for me.

It did not look at me the way my other spirit animals have done. I thought it might be somewhat pissed off, actually, the way it flew so close without taking the slightest notice of me. When I get that special look—from foxes, kangaroos, or does—I know my intuition is right. But this eagle simply soared straight over me. It was protecting me in my space, telling me to stay in a holding pattern for just one more day. So I didn’t send the email I had already composed in my head.

The next evening, MJ and I sat on our deck again with a glass of wine. I still hadn’t composed anything new, but I was thinking about things in a different light.

Out of the blue, I said, “You know, I have hundreds of pages of notes. So many ideas I simply can’t throw away. I still have time. Maybe it won’t be the best piece ever written, but I’m going man up and get it done.” I didn’t know exactly how this was going to happen, but I felt a seed inside me that never lets me down. Even, in retrospect, if I already had a large tumor causing trouble in there by this point, I knew this piece was as good as finished, with only a few months of scribbling in front of me.

“I like that,” MJ said. “I like that answer a lot. Good for you!”

She patted my knee and went inside to check on dinner.

I waited for the eagle to come by again, this time looking into me, telling me something like, “Told you so,” but it never did come back.

Tuesday, January 17, 2012

Early Blog #8 (Peppers)

Here's another early blog of mine from over two years ago:

TUESDAY, OCTOBER 13, 2009 7:00 PM, EDT

Tuesday afternoon. Until this moment, I have been supervised since my surgery. I feel fine as long as I stay horizontal, and even though I should probably be with someone around the clock for the next few weeks I had no problem sending MJ off to rehearse downtown. My post-op instructions actually encourage me to make reasonable attempts to try a few normal things from time to time, as long as I can easily get back to a couch.

Plus, I know how to dial 911.

She kissed me goodbye a few hours ago and said, “Stay put, right?”

“Right. I’m on the couch. Got my book, and thank you notes to send.”

“All right.”

When I heard the garage door close, Noah began whimpering. His dinnertime was still an hour away, but I wondered if he needed to go outside. He didn’t. Maybe I needed to go outside.

I went out the back door into the cold air. A few feet away, our raised bed of pepper plants looked completely withered and pathetic, hit with a few nights of freezing temperatures so all the leaves now drooped lifelessly with a sickly dark green. The peppers underneath, however, were more robust and could withstand a few nights of cold before they too begin would begin to rot. Peppers are my favorite vegetable to grow (you plant them once and leave them unattended for months) and I did not want to let a year’s crop get away from us because of some dumb brain surgery.

Before my operation, I planned on harvesting all of them — maybe the day before as a kind of new-age spirit-building experience — but my stamina weakened so much I put it off indefinitely. As I inspected the dead plants now, I saw I still had a chance. A few peppers were gone, but so many were still good.

The raised bed is 4 feet wide by 8 feet long, with one large plant every square foot. 32 total plants, 8 different varieties. The benefit of growing them yourself (especially hot varieties) is you never need to buy them at the store, and you will be stocked all winter with as much as you need. Frozen hot peppers are so easy to pull out of the freezer, chop up, and throw into a pan with onions, garlic, or ginger, and that creates a base for most of the great, zippy recipes MJ uses to form the staple of our late dinners.

The hard part is keeping track of the hot ones versus the sweet ones. Every year I begin with a system marking the plants, knowing which long peppers are mild, better for salads, which do better adding zip to soups, which fry up better, which go better on my pizzas. It seems easy in the beginning, but by the time harvest rolls around they always end up in the same bin, looking so similar to one another. They are sorted instead by size and shape, mixed in together, put in Ziploc freezer bags, and then the rest of the winter MJ and I enjoy what is basically a pepper heat lottery.

A recipe of Mexican scallops she makes often with lime, cilantro, and peppers is sometimes pleasantly mild, and sometimes so bracingly hot it can be hard to swallow.

“I only put two of those little ones in!” she would say. “Last time I used six bigger ones and it still wasn’t enough.”

“It’s fine, it’s fine, I love it,” I always reply. And I mean it. I do love it both ways. I have a high tolerance for heat, and it is good for my blood pressure anyway. It’s fun. Food you grow for your own consumption is food for your soul.

As I inspected the 2009 crop, which had perhaps another few days before complete annihilation, I decided to harvest. I felt completely fine. I was rested and strong. In ten seconds I could be inside on the couch if I needed to be. To completely safeguard, I took the phone outside with me, made sure I saw the numerals 9-1-1 clearly, then took the shearers out of my pocket and clipped the first pepper plant at the base and turned it upside down. One by one, using this method, the peppers revealed themselves by popping away from the dead leaves draping around them. So many good peppers get lost in the shuffle if you don’t do it this way. In no time, I had filled two baskets and I brought them inside. I felt okay, then went out and filled another two baskets. A little dizzy this time coming in.

Now Noah was standing by the door, so I put him outside. I took the shearers out with me, clipped and harvested all but the last four plants, which were Thai pepper. Noah roamed the yard on his tether, not doing anything in particular, just wanting to enjoy the cool air. I was quite dizzy now, I realized. Time to stop.

I brought the peppers in, steadied myself, and went back out to see Noah. He was sitting, surveying his territory peacefully. The four Thai plants at the end of the raised bed still beckoned to me. They were large plants but yielded tiny peppers which are the most labor-intensive to separate, so I simply clipped them at the bases and brought them inside to deal with later.

It was now time for Noah’s dinner, so he came in and I fed him. As he chewed his rawhide dessert, I relaxed and lay down horizontally in my safe position. I dangled the Thai plants over my head, admiring the red and green slivers revealing themselves to me like lit ornaments on a dwarf holiday tree. I clipped the tiny peppers away one by one with scissors so they fell on my chest. It was not strenuous, just peaceful feeling those hot drops against my heart. Before long, everything was done: dead plants in one pile, and a few generous handfuls of tiny Thai peppers in another pile. I sat up, picked out the remaining dead leaves and put these potent little heat bombs in with the rest of the pepper harvest, sorting everything by size.

The hot ones and sweet ones are once again mixed together, so this winter will be another fun adventure with unpredictable pepper heat. I’ll make the same mistake in sorting them next year too. It’s one of the ways I enjoy my life.

Friday, January 13, 2012

Brief Candle

Some things have been weighing heavily on me lately. I haven’t written because (for once) I don’t know quite how to address this topic. But it is growing inside me, taking me over, so in the spirit of my blog I must write it down.

Ever since my diagnosis, I have approached healing as a kind of extended improvisation, a lone player on a stage stringing phrases together as new challenges crop up. I have never met or spoken to another adult patient like me because we are so rare, a few hundred cases per year. Every once in a while I search the web for craniopharyngiomas, but mostly I am led to dry medical studies, not actual patients.

A few weeks ago, this changed. I joined a support group.

In the privacy of a closed group I can read about and communicate with others who have my same condition. As a “one-of-a-kind” patient before, I felt the freedom to make fun of myself as a way of coping. This allowed me to dive back into normal life. But when the tables are turned—when I read about someone else with the same condition—my heart crushes.

A thornier issue is that my support group gives me further insight into our bumpy lives ahead. I can peer into my future. I’ve been getting used to everything for just two years, but now I can talk with people who have lived with it much longer, saying things like, “Oh, I’m on my seventh brain surgery,” as if amassing surgeries were the same as collecting baseball cards. After a while, I suppose it gets to that point. You grow a tough outer shell. You get used to hospital stays every few years, all the needles and beeping machines. You make another notch on your belt and then wait for the next one. I’m not ready to go there with my thoughts yet, but now I see it around the corner.

When I saw the tributes for the children in my group who had “earned their wings” in the past month, I lost it. As I scrolled through the pictures—images I would never show MJ or anyone else—my first reaction was to want to trade places with them. I would, in that instant, have given my life so one of the other patients could have lived. But when I really think it through, I have to wonder if trading one patient for another makes much difference, or any sense. It’s apples for apples, and we all live through the same things, going at it our own ways, finding our own highs and lows along the timeline. I guess what I felt was a primal drive for brotherhood or sisterhood. I wanted to show compassion and solidarity. Then I wanted to feel it right back.

I know how serious things are with me, but I also know my condition is anything but hopeless. If anything, I’m the lucky one in my group wrestling with survivor’s guilt when so many others are saddled with obesity, blindness, heart conditions or adrenal crises. So far I have kept these side effects at bay while I improvise my part upon the healing stage, strutting and fretting with all my sound and fury, surely signifying something.

Tuesday, January 3, 2012

In Sickness and ...

Oh my God. I am enduring one of those horrible nights again. Writing at 3:52am is my last resort because I can't do anything else. I can't lie down and stay still. I have no energy to wake up. My body is chilled and sweating at the same time. The light of my laptop soothes me.

I made a pot of green tea at 3:52am because it sounded good. Hot liquid going down my throat feels nice. I don't know why I want green tea. Every once in a while a loose strand gets in my teeth. I chew on it and swallow. It feels like a blade of grass in the springtime. The green bitterness gives me life somehow.

I continue to bat 1.000 for getting majorly sick upon returning home from any trip away from home since my brain surgeries. I have not gotten sick during trips, only when I get back. It's like I am in survival mode on the road, tapping my reserves (and looking normal), but when I walk in my front door everything releases. My body turns on me and punishes me for putting it through those tests. A year ago I had pneumonia after coming home from a few days on the road. After Cabrillo last August my body completely shut down for several days.

Two days ago, after returning home from the Christmas and New Year's break, I felt the slight hint I could be getting sick. The trick with hormone replacement therapy is to switch to a "stress dose" when you sense this happening. I did this, but yet here I am. On the plane ride home, everyone coughed. The seats felt dirty, I was tired. The terminal at Newark had pigeons wandering about. Pigeons.

I know how this happened. It's the Diabetes Insipidus (DI). Managing a correct "breakthrough" every day is taxing, both mentally and physically, but it is critical to my health. To do it right I need several hours where I manage the breakthrough on my own. My DI is extreme, and when I sense it coming on I keep drinking water to stay hydrated while I make repeated trips to the bathroom, about every ten minutes. My thirst catches up with me and then I can only drink ice water. After that, water itself repulses me and I switch to icy club soda with either a splash of citrus or cranberry juice. The acid and the bubbles are the only thing to simulate thirst quenching for me as I continue to make trips to the bathroom.

Finally, after a few hours, I know the breakthrough has reached its peak. I know this because my legs buzz. There is a tingling sensation in my legs, a whooshing upwards just as I urinate one more time in the bathroom. A doctor has suggested this is me sensing my lymph nodes draining. That sounds weird to me. Anyway, my legs buzz, and when they do I hit the nasal spray which stops everything at once. But if I hit the nasal spray too soon ... it's 18-24 hours until I the next breakthrough. Anything I wanted to flush from my body will be stuck in there for another day.

That final draining—waiting for the legs to buzz—is something I just sense as the right thing to do, to stretch out the breakthrough that long. When I don't get to that point for a few days in a row I start to gain weight, feeling bloated and sick. When I string together many days of a complete breakthrough I feel spry and healthy.

When traveling, it has been virtually impossible to manage a DI breakthrough correctly. Plane delays and long layovers make it impractical to run in and out of the bathroom for those hours. I had one complete breakthrough during my vacation. I know this because I remember pawing through the fridge looking for club soda or Pellegrino, then raiding the bar for cranberry juice. It was one day out of five. And on the way home we encountered travel delays in an enclosed space with everyone coughing on me. I tried to stave it off, but my immune system—unless it is in pristine condition—can't win matches like that.

Well, it's 4:36am. I hate that, when you look at the clock and you think more time had elapsed. I wish it were two hours later, the sun coming up. I started writing this at 3:52am, so ... are you #@%&!* kidding me? Only 44 minutes have gone by? I'm making another pot of green tea, the hot liquid on my throat the only thing that can soothe me now.