NPR Interview

BEGIN TRANSCRIPT (Edited for length)

[THEME MUSIC]

Terry Gross (Host of NPR’s “Fresh Air”): My guest is Alexander Miller, blogger behind “Husband Amused” where he writes about surviving the resection of a brain tumor. He is a professional oboist with the Grand Rapids Symphony and the Cabrillo Music Festival Orchestra. He is also a composer of works such as “Remix in D,” premiered this year which applies hip-hop techniques to the Pachelbel Canon, “Fireworks,” performed in Carnegie Hall in 2005 and “Let Freedom Ring” for orchestra and narrator which has been performed by Danny Glover, James Earl Jones and President Bill Clinton. Welcome to Fresh Air.

Ale Miller: Thank you for inviting me on the program. It’s great to see my tax dollars at work.

TG: Eh —

AM: Kidding. I’m kidding.

TG: Okay. So you had a brain surgery earlier this year —

AM: — two —

TG: Two surgeries to remove a brain tumor. I’m curious, how did you first suspect you might have a brain tumor? How does that come about and when did you first think there was a problem?

AM: When I was writhing in pain. That was my first clue.

TG: So you —

AM: And my ears were ringing. I kept thinking it was dinnertime.

TG: Let’s hope it was someone good at the stove. So you went to the doctor. Your doctor ordered an MRI to rule out anything serious, but the MRI found a tumor. How did that hit you? That must have been hard to hear the news.

AM: It was. I mean, it’s one thing to hear about it, but it’s something else to SEE it, you know? There was this large mass right between my eyeballs. It was there plain as day on the screen. It was all, “HELLO! I’M A GOLF BALL STUCK IN THIS HERE BRAIN!” You know, like that. You didn’t need to go to medical school to spot that one.

TG: And you wrote in your blog this mass was—[sound of shuffling papers]— quote “squeezing apart your optic nerves like Zampano breaking the chain across his chest in ‘La Strada.’” That’s quite . . . is it getting hot in here? . . . [laughing] Why did you decide to begin blogging?

AM: It kind of evolved. At first, there was this website called Caring Bridge where my wife would write medical updates so loved ones could be notified simultaneously of changes to my condition while I was recovering in the hospital. “Alexander is not drooling as much today.” [Laughing.] You know. After a while, I began writing the blog myself as a way to pass the time. Then I registered my own domain name “Husband Amused” and it kind of went from there.

TG: You received feedback that encouraged you to keep writing.

AM: Yes. At first it was a few hundred friends and family egging me on. But then it went viral and now you are interviewing me. I must say, it's very surreal. After today’s program, I hope to increase my readership by at least five percent.

TG: Heh, I uh . . . [sound of coughing] why do you . . . you reveal some very personal things in your writing. You discuss personal failures as an adult, thoughts of suicide as an adolescent and childhood traumas such as the death of your nanny and seeing a dog shot to death when you were three years old. What made you take this approach as a writer?

AM: Drugs.

TG: What?

AM: I mean, being totally honest it was the drugs. I wanted to hug everyone and share myself with everyone on the planet. Drugs are great for creativity, you know, just terrific. Especially the ones nurses inject in your IV.

TG: But surely you don’t want to send the message drugs are good?

AM: Oh no, of course not. Alcohol is equally important. “Just say yes!” I guess.

TG: [Inaudible].

AM: Hello?

TG: [Inaudible.] Sorry, I was just summoning the intern whose idea it was to book you when the Tiger Woods people canceled at the last minute.

AM: Hey, it’s cool. I am who I am who I am. That’s me quoting some poetry there.

TG: Okay. You also write about your dog. Tell us about your dog Noah.

AM: Well, he’s a big black dog —

TG: — a Newfoundland, right? —

AM: Indeed. Wow, you did your homework. Did you actually read my blog before doing this interview or was that a lucky guess?

***

Of course (and before I go too much farther) none of the above actually happened. As I while away the long hours of my convalescence, my imagination runs wild all the time the way it did when I was a child. There is no other way to cope. In the last few months I have made inauguration speeches, accepted Pulitzer Prizes and thanked the Academy more times than I can count.

But my favorite fantasy is when I am interviewed by Terry Gross on NPR’s “Fresh Air.” Every time I turn on NPR on the drives up north I hear her intelligent voice, and all I want is to be on the receiving end of those interviews. By now, I know the formula. Here it is:

Terry Gross: My guest is Famous Celebrity. Hello, Famous Celebrity.

Famous Celebrity: Hello, I feel all cozy with you.

TG: Aww, snuggle snuggle.

FC: Snuggle back.

TG: I’m your mommy all of a sudden and I’m going to throw softball questions at you.

FC: I’m catching the softballs!

TG: Question about your childhood?

FC: Regular this, regular that. But inside I knew I was different.

TG: [Head tilted]: Really?

FC: You understand me!

TG: Now I’m going to pick at the scabs.

FC: Ooooh, that tickles!

TG: Thank you for being on the show.

FC: Is it time already?

***

As my convalescence nears an end, I must ask myself the same question I hear in my imaginary conversations:

Is it time already?

Is it time to return to normal life?

Just when we were starting to have fun?

Tumor Board

On Friday I met with my neurosurgeon, and (finally) here is the report –

My neurosurgeon had just returned from his presentation at “Tumor Board”, and yours truly was (as usual) the subject of much debate. Papillary craniopharyngiomas don’t just happen every day, and the brainiest of the brain surgeons all clamored to have a look at my head scans. My surgeon pulled up the MRIs from just before and just after the second surgery and placed them on side-by-side monitors. The “before” image showed a big mass behind my eyeballs squeezing apart my optic nerves like Zampanòbreaking the chain across his chest in “La Strada.” The “after” image looked pretty clean with the entire tumor gone.

Except for one tiny speck.

Behind a curl of bone in the skull the surgeon could not get to, there is a little white mass on the “after” MRI scan. The speck is not necessarily tumor. It could, for example, be my pituitary gland pushed way out of place. Or it could be nothing. Or it could be tumor after all. Or it could be a fly on the lens. Regardless of any argument from an academic point of view, nothing is definitive. There is just no way to know.

All I know is I have a teensy little speck still in my head and the smartest guys in the room couldn’t agree what to do. Here are my options:

Option #1: DO NOTHING. There is not much to suggest I have much to lose by this approach. The tumor was not malignant. Even if this benign speck grows back over time, craniopharyngiomas are notoriously slow-growing masses and it might not be a problem for 5-10 years down the road. With regular brain MRIs now a certainty for the rest of my life, this little speck’s every move will at least be tracked, tagged and monitored. Nothing will sneak up on me.

Option #2: RADIATION THERAPY. This was the biggest point of contention at Tumor Board. From a neuroradiologist’s point of view, my tumor has just been whittled down and forced into a corner. What is needed is a good few zaps to deliver a knock-out punch and kill it for good. Sound reasonable. However, the argument against is the potential side-effects. Less than 1% of patients receiving radiation between the optic nerves will suffer permanent vision loss of some sort. For those who have seen me go through this before, every time I have a major medical procedure, I find myself in that 1% category. I just can’t risk partial blindness. I happen to like the conductors in my life, and I’d like to be able to see them so I can know when to play.

Option #3: SURGERY. The worst option, and everyone at least seems to agree on that. There is little to be gained by opening up one mo’ time trying to find a tiny speck when the last surgery was over four hours of meticulous scrape, scrape, scrape. Another hospital stay is not worth it at this point, even for the awesome drugs. [ <-- Joke ]

Option # 4: CHEMO. Uh, no.

ANALYSIS: It seems like a no-brainer (pun!). I’m going to do nothing. My next MRI will be in two months, and we’ll be able to compare that with the post-op scan. There is a small argument to be made for radiation therapy right now and pulverizing the remaining tumor in its most vulnerable state. However, what if the targeted mass is not tumor but in fact my pituitary gland out of place? That would make things worse. Also, the slight chance my eyesight could be damaged is not worth it, no matter how remote the odds. Surgery just seems stupid. I liked the nurses fluffing my pillows, but besides that it was one of the worst experiences of my life.

It is human nature to want to DO something, to proactively add something to a set of variables in order to make things better. It goes against our natural instincts to sit back and do nothing at all, yet sometimes this is the right course of action, to remain passive as things reconfigure around you. This is such a crossroads for me. I have a tiny speck in my head, and it bugs me that probably it is up to no good. I want to reach inside my skull, yank it out, and be done with it. But it’s not often in life we get to make everything just so and we need to work around little specks from time to time.

The Giggles

I saw my brain surgeon this morning, and I will write a full report on that tomorrow or Sunday. For some reason, I am very nostalgic tonight and I just feel like writing about a few old memories of mine, something I have been compelled to do several times during my weeks of healing following both surgeries. Anyone's key memories are usually formed when something is done for the first time . . . or when something goes horribly wrong.

When the two are combined, watch out.

Right now I am home with Noah, convalescing for yet another long evening of hot and cold flashes. MJ is out performing “The Nutcracker,” one arm of the triple-hell professional musicians go through every December comprised of “The Messiah,” Christmas Pops, and “The Nutcracker.” Now don’t get me wrong—all of the above is beautiful music. This is why it is played year in and year out. But with repetition anything beautiful can lose its sparkle. So as I re-evaluate every part of my life and continue to put myself back together, my mind wanders to the first time I ever played The Messiah, when everything was fresh and new.

I was a junior in high school. The year before I had changed to my first serious oboe teacher and I was now playing “gigs.” When December rolled around, I was called to play second oboe in The Messiah with a pick-up orchestra. When I arrived for rehearsal, I stopped dead in my tracks. There, in the first oboe chair, was the best free-lance oboist in town, a recent graduate of arguably the top oboe school in the country.

He looked me up and down and returned to his warm-ups consisting of arpeggios in every key. (I wet my reeds and tooted a few notes.) When he was done, he extended his left arm and said, “Okay, let me try your set-up.” I handed my oboe to him along with a reed I had made. He blew into my instrument and sounded good. Real good. He played everything with authority.

“Good,” he said, and handed it back to me. He guided me through the rehearsal, giving me tips. (“In this spot, wait for the celli and don’t come in early,” etc..) I took notes and tried to keep up, but it was the longest piece I had ever played. Endless pages of music. Gorgeous stuff, but I was too frazzled to appreciate it.

The conductor had one odd request: when the chorus was to sing the line from Psalm 22:8, “Let him deliver him,” he wanted the voices to have a nasal, witch-like quality. He did not “conduct” these bars in the traditional manner of beating time but instead rubbed his hands together in sinister fashion.

At the end of rehearsal, the first oboist patted me on the back. “Good,” he said, and left.

At the concert everything fell apart.

It began with a wrong entrance by a cellist. She jumped in a beat early, something musicians refer to as—for better or for worse—a brain fart. The sound of her cello during the silence was so wrong it was funny. In the pure silence it indeed sounded just like a fart.

The seed of destruction was planted. This was my first experience outside of school where a case of the giggles spread like a rogue virus. I expected professionals to be immune to the giggles (and, truth be told, they are for the most part) so it was jarring to see role models doubled over.

I did not want to succumb to it, lest I appear like a giggly kid on his first job. The others had paid their dues and had chits to cash in. I put my mind elsewhere. Anywhere.

My music stand. It was crooked and leaned back too much. If I tilted it forward I could read the music at a better angle. I set my oboe on my lap and tweaked the top of the stand.

HONKY! HONKY!

The stand needed oil. Everyone heard it and it was louder than the music. But now the stand stood straight up and down and my music was in danger of falling forward. I had no choice but to push it back. I did so with great care.

HONKY! HONKY!

A bark of laughter popped in the brass section. What previously had been private snickering was now unabashedly audible, and it only devolved from there. What was worse, I had caused this turn of events. What really set things off was that the choral section with “Let him deliver him” was up next. The conductor’s special request for the witch-like timbre could not have been more ill-timed. When it happened, the chorus members contorted their sound so much they might as well have been singing, “I’ll get you, my pretty . . . and your little dog too!” That was all the musicians needed to lose it.

The very first time I played in public I battled the giggles too. It was in the third grade in Australia for a Nativity play. I was the only one in the class who played an instrument that was not the recorder, so I was assigned to be an angel that would play a hymn on the flute right after Jesus was born.

My costume was mostly a smock from art class that was bleached white. On my back I had a pair of wings fashioned from coat hangers and newspaper spray painted gold and attached to the smock with black electrical tape. I didn’t get to see the play unfold, but I knew that when a teacher pointed at me I was to walk in front of everyone in my angel costume, play the hymn from memory, then walk off.

The whole time I was terrified I was going to laugh, but I didn’t. I got through it, and that gave me a supreme boost of confidence. Perhaps even then—my first time as a soloist in the third grade—I felt a little bit of the high I get every night I’m on stage, the guilty feeling that I know I can do something a lot of others cannot.

T-shirt Must Remain On

I write today with a shred of good news: a doctor examined me and did not declare my situation completely hopeless.

More specifically, I had a follow-up appointment with the Ear Nose & Throat (ENT) surgeon—a terrific man—who also happens to be my next door neighbor. I had a host of questions for him about my ears ringing, my tingly scalp, my bloody nasal discharges, etc., but all I was able to walk away with was the confirmation that none of my current issues ORIGINATE from problems in the ears, nose, or throat. I suspected this, but it was necessary to have this intermediate step before the big appointment next week with the brain surgeon.

If my head were a giant nut, the ENT surgeon is like the nutcracker and the neurosurgeon is like that metal stick near a bowl of holiday nuts for poking and prying the meat out of walnuts and pecans. So today I ruled out problems with the "shell" and next week the brain surgeon will get to the "meat," probably with another MRI.

The other key thing I heard today was my extremely unusual PAPILLARY CRANIOPHARYNGIOMA (and its recurrence) was nothing more than "bad luck." Nothing in my lifestyle, eating / drinking habits, allergies, oboe playing, fondness for the Detroit Lions, fondness for the Stockhausen Klavierstücke, or anything I can possibly control led to the tumor. A few unlucky ones get it. Most don't.

In the meantime, I have begun to manually replace hormones my pituitary, hypothalamus and thyroid glands will not provide for me anymore. When I wake up first thing, I take a thyroid pill with plenty of water. Then for my diabetes insipidus I do one squirt of a nasal spray which keeps me from urinating up to 24,000 ml per day (and drinking water frantically to keep up with the dehydration). One little squirt stops all that. Amazing.

Then I shower and—literally—it is time to "man up."

As I dry myself—the water droplets on my tanned pectoral muscles glistening in the morning sunlight—I open the top drawer and retrieve a foil packet of AndroGel. Pure testosterone.

I put on gamma-shielding sunglasses and rip the packet open. A burst of laser light blazes from the open foil, bouncing off the mirrors, and a chorus of angels sings high above me. I smear the gel evenly over my shoulders and upper arms, then wipe the excess over my abdominal muscles which protrude like a six-pack of steel. I wash my hands thoroughly and wait for the gel to dry before sliding into a loose T-shirt. I must keep the T-shirt on always—A.L.W.A.Y.S.—and suffice it to say the instructions leave no stone unturned when spelling out circumstances that arise between spouses where the T-shirt MUST REMAIN ON.

My endocrinologist—the straight talker—was clear about this too. He said, "Apply it to your shoulders and stomach. Keep a T-shirt on and make sure you don't . . . uh . . . get it all over your wife."

Got it.

This encouraged me to read more of the printed instructions for AndroGel because they were starting out so darned good. I was not disappointed. I also read, for example, it is not a good idea to apply AndroGel "directly to the scrotum." I was not going to do this, and I must say the thought never occurred to me. But I assume the determination of some patients to get back on track knows no bounds.

Also (I read with increasing interest) AndroGel is flammable. Staying away from open flames is "recommended." Reading back to the earlier paragraph about where NOT to apply the gel, I wonder if some unfortunate soul did the unthinkable once and—in a bedroom full of romantically lit candles—he ironically made Jerry Lee Lewis's biggest hit ("G. B. of F.!") very relevant all of a sudden.

I have been though enough rehabs (knee surgery, two hernia repairs and now two brain surgeries) to know the value of a slow, measured approach to putting oneself back together, both physically and emotionally -- Do it slowly, do it once, do it right, do it carefully, don't rush it . . . and don't do something stupid like self-immolate.

Update - MEDICAL

In two days I follow up with the Ear, Nose & Throat surgeon, and next week I follow up with the neurosurgeon, who will likely order another MRI. My hormone levels will be re-tested in six weeks and my dosages will be adjusted accordingly.

In a nutshell, here is where I stand today:

THE GOOD—No signs of “major” setbacks following brain surgery. No infection, no fever, no blood clots, no spinal fluid pouring out my nose. My hormonal shortages can be replaced. My vision is about 90% back and all my limbs are still attached. Also, I’m not a professional golfer with P.R. trouble and a lot of splainin’ to do to my wife.

THE BAD—
-Headaches persist (in some ways getting worse), and they are not supposed to have gone on this long.

-The top of my scalp is once again “tingly” as it was before each of the positive MRIs.

-The ringing in my ears is once again constant as it was before each of the positive MRIs

-My vision—though greatly improved—is now quirky and unreliable: paragraphs pop unexpectedly when I read. I worry that my optic nerves have been damaged permanently.

-I’ve had strange bloody discharges from my right nostril, the point of entry for the surgery.

-I’m not good enough at golf to do it professionally. If I could, that would be awesome.

MY PREDICTION—The follow-up with the ENT won’t tell me much, but I might get an answer about the strange bloody noses. Next week the neurosurgeon will order an MRI to see why some of these symptoms are returning. I know what to look for in the scans, and by now I know BIG WHITE SPOT = BAD. But perhaps it is nothing. With the rarity of my tumor, there is little to compare it to.

I have done plenty of reading, and it is unthinkable the tumor—a benign one at that—could return a third time so quickly. Then again when it returned the second time no one predicted that either. Let it be known I can feel inside my head something is not right. My intuition is that simple. Yet from a medical point of view, the excision of the tumor walls (not done the first time) would preclude so quick a return. Yet my feeling persists, and when I get one of these sensations I am rarely wrong.

The liberating thing is there is not anything I can do in the meantime, so I enjoy every day as it comes. I have had plenty of time to be philosophical the past two months, and in a lot of ways life seems simpler than it did before. I didn’t choose my brain tumor, so I’m not depressed. I count my blessings, and I have many. In life, we either have circumstances thrust upon us (which we cannot control) or we have choices (which we can control). I have beaten myself up and learned from bad choices—and I have made a few notable ones—but I won’t expend energy worrying about things I can’t control. Life is too beautiful to waste time crying about circumstances you didn’t create.

Testosterone

I have not made any updates to this blog recently because there hasn’t been anything to report. My extremely low energy, my headaches, and my hot/cold flashes have kept me sidelined. Last week my hormone levels were checked, as I reported. On Friday I started a replacement therapy for an underperforming thyroid gland.

This morning my phone rang. It was the endocrinologist calling me personally.

He said, “We finally got the numbers back on your testosterone level. Uh . . . we need to treat it.”

I had been waiting for this. Prior to the first surgery, my number was 114. (Normal, healthy males my age score somewhere between 300 and 800.)

“Great, “ I said. “I assumed we’d have to treat it. Two brain surgeries is not going to make a low number go up. So what’s the new number?”

“Seven,” the endocrinologist said.

“Wait . . . seven? As in the number seven? SEVEN?? On a scale up to 800?”

“Yes.”

(Jaw drop + profanity.) So there you have it, and that explains my overwhelming sense of ennui, not to mention why I can’t open jars anymore. My pituitary gland is officially kaput. Squished. Stick a fork in it, because that turkey is done. It would take fifty of me to equal one Woody Allen. Er, maybe that’s a bad example. Still, I am at 1/100 the level of your typical British MI6 agent.

So today MJ—also not doing well, by the way, battling major pain with an infected wisdom tooth—will bundle up and go fetch my treatment. From now on I will have a daily packet of gel to smear all over my shoulders and chest. This is something I will need to do “for about the next twenty years,” according to the endocrinologist.

I appreciate doctors who speak plainly, but this was maybe one of those times I would have preferred a little white lie.