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7/18/2007   7/25/2007 -- next page
I've had a few weeks to come to terms with this -- I was tracking the various tests and procedures that my doctor was pursuing using the happy world wide web, and it became apparent to me what he was suspecting. His call last week didn't surprise me, although I partly hoped it would (although some of the alternatives might have been even worse... not much, though!). So there is a bit of distance between the initial realization and my current thinking about what may unfold. Also, there are still a lot of lurking questions: what will my life be like in the coming decade, year, months? I have an appointment with a hematologist/oncologist at Princeton next Wednesday; perhaps some immediate answers will follow. Of course we'll have the usual second opinions, etc. but at some point we'll have to make decisions about what to do.
Dang! There is still a lot I want to say, a lot I want to do! Things I want to tell my kids, things I want to write, music I want to create, experiences I want to have. Dang! I thought I'd start this blog in a feeble attempt to get a little of this accomplished, plus it will give me something to do at times when I'll probably really need something to do. With a little luck(!), I will be able to read this years from now as a record of a particularly "interesting" time. If not, well, at least I got some of this down.
I'm not a big fan of blogging, and I bet this will exhibit a lot of the worst aspects -- random connections, wandering thoughts, bogus assertions, self-centered, self-serving and maudlin texts, the whole gamut. Not a whole lot of serious editing, either. Probably I'll give up on it after awhile anyhow. Oh well, a little may get scribbled down. Who knows, it may be interesting for someone to read at some point.
Confronting your own mortality in a really direct way like this does give you a clarity, a focus, that you didn't have before. We all pretend we know we're going to die, but when the news comes hard and you realize you do indeed have a finite and circumscribed time, you rearrange priorities in a way that isn't all that bad. It's Christmas Eve, and the time I've had with my family (just got back from my sister's, and Daniel is in bed, Lian wrapping gifts, Jill winding down for the night) has been resonant in a surprisingly wonderful way. It's hard to describe, but cliches' like "perspective" do capture a part of it. What an amazing thing it is, to live a life like this.
Merry Christmas! Happy Holidays!
So here's what happened: Late this past October, I woke up one morning feeling as if I had 'slept wrong' on my left shoulder. Several days later, after the pain had intensified to the point where it was becoming difficult to get dressed, I went to see my doctor. He thought that I had a mild inflammation of my cartilage, but "just to be on the safe side" ordered an x-ray of my clavicle. He recommended I rest -- right at the height of leaf-raking season, ha ha! Jill called it "couch potato disease". :-)
Dr. Richter called me shortly after the x-ray results were in, saying he'd like to have an MRI done because something unusual had appeared in the films. In the meantime, we had planned a trip to Vienna for the Thanksgiving holiday. I scheduled the MRI after our return. On the way to the plane at Newark, I was lugging one of our suitcases up onto the shuttle bus, and felt a crackling sensation in my right shoulder followed by fairly intense pain. The pain subsided, however, and we decided to continue with the trip. Good move; it was wonderful. Jill was there doing work at the International Atomic Energy Agency, so I got to be the spouse this time around. Really nice to have everyone together, spending time with Lian and Daniel. We actually had turkey-schnitzel on the T-day.
I went to the MRI, figuring that my right-shoulder episode at the airport was due to overcompensation for whatever was happening in my left clavicle. The reading of the MRI showed "multiple lytic lesions", and typing that happy phrase into google was the first time I began to appreciate the seriousness of my condition.
In fact, it was while trolling around the internet for more information about this possibility, contemplating the fairly grim statistics for multiple myeloma, that I think I went through a lot of the 'coming to terms with the disease' mental rearrangements that have to happen. There were some rough periods as I thought about these things, but by the time a bone-scan and subsequent blood tests confirmed the presence of myeloma, I was somewhat reconciled to my new life situation. The hard part was telling people about this. Especially Lian and Daniel. My dad/mom and sis. Jill already knew.
Now here's the good news: We had an encouraging visit with Dr. Yi yesterday, a hematologist/oncologist in Princeton. He has that Oriental way of constructing English that we native speakers find pleasantly gnomic: "Important to keep positive attitude." "You a young guy -- live long time!" He pointed out that my general health (other than the myeloma, of course) was quite good, and the tests indicated that the disease was at a very early stage. He said that the next step would probably be a bone-marrow biopsy followed by initial drug treatment prior to an autologous (i.e. from myself) bone-marrow transplant with follow-up chemotherapy. He also said it was best for us to have this work done at a center that specializes in multiple myeloma, for it is a relatively rare disease. We're trying to set up an appointment at the Weill Cornell Center for Lymphoma and Myeloma. In the meantime, I'm enjoying playing "Catopoly" with the kids and being with Jill. And writing this silly blog, too.
Word seems to be getting around. One of the most amazing things are the warm e-mails and phone calls I've been getting from friends and colleagues. I'm not trying to keep this secret -- hey, I have a blog after all -- but I haven't really advertised it to too many people. It really does help me keep that "positive attitude" hearing from people I care about and respect.
Attitudes, huh. It's a funny manifestation of pop-psychology culture I'm sure, but I have in my mind all that nonsense about the reception stages of life-changing news; you know: the denial, the anger, the despair, acceptance, whatever. Over the past month, I think I've been experiencing most of these almost simultaneously. There is no sequence, no closure. The best I think I can do now is when I can cast the whole experience as a new life adventure. Which it is.
I've also had two, almost opposite psychological reactions to my mortality-realization. I can label them "freezing" and "flow". Here's an example of the "flow": the day before yesterday I was walking down our street in the late afternoon. It wasn't really dusk, but the light was beginning to wane. I looked up to see the trees semi-silhouetted against the sky, and somehow everything seemed liquid, like water. Not that things blurred and bled into each other, more that all the component parts were connected, like molecules in a fluid. Things come, things go -- they flow.
A good "freezing" example happened tonight at dinner. Jill, Lian, Daniel and I were discussing our plans for New Year's Eve, and all of a sudden it became almost like a cinematic trick. I could stop time. It was such a wonderful scene, I wanted to commit it to some eternal memory. Like I could float around and tangibly feel the familial joy we shared. Fixed forever, to be revisited again and again. This makes acceptance possible, I guess.
Death also appears to me in many places these days. For example, I just started reading Jonathan Franzen's book of essays How to be Alone. The first chapter was about his father's long descent and death by Alzheimer's. A few weeks ago I just finished Umberto Eco's The Mysterious Flame of Queen Loana, an extended meditation on memory/identity through the narrator dying from a stroke. At the start of the semester break I read Sarum, Edward Rutherford's 'historical novelization' of England (popular back in the late 1980's, but I never read it then) for some happy escapism. Being about generations of people who lived through the ages, it was also about generations of people who died through the ages. Life comes, life goes.
I don't find this new death-fascination troubling or terrifying. To the contrary, I think it is latent within all of us; it has to be. I have found it to be strangely... well, I wouldn't say liberating so much as clarifying. All those seemingly trite expressions: "live in the moment", "appreciate what you have", there is a truth in them. I would occasionally touch that truth before my recent events, but now it informs almost everything I do. I want to tell these things to Lian and Daniel, and really mean them. Forget multiple myeloma, a truck may be waiting for you on the turnpike.
The problem is that I don't really have any good reasons to give for what I do, hence my existence. I can't fit my 'output' easily into the religion/family/community nexus, and if I am in fact doing X in order to accomplish Y, then there are probably much better ways to do X (whatever X may be).
Some of this was motivated by one of the essays in Franzen's How to be Alone book. He talks about writing "the big social novel", and imagining a "general audience", going on about how he envisions his prose working to change the world. Something struck me as wrong about this, something didn't seem right about the teleology of the enterprise (to Franzen's credit, he's very ambivalent about it all in his essay). I'm conflicted about this, because part of me wants to buy into the audience-directed artistic communication model, but I've discovered that I'm not very good at it. I've wound up in a job where that doesn't matter so much. Well, that's not quite true -- the audience becomes a different group of people with different expectations and judgement-criteria, and I'm not very good at reaching them, either. So what good am I? What is the point of my work, my life? I don't solve big problems, I don't really do good works, I'm not discovering cures for diseases like multiple myeloma, I mean... heck!
In the past I've fallen back upon a set of relatively academic responses: "I'm showing a new way of being in our society through the way I construct my life", that kind of nonsense. The words seem a little specious and self-serving right about now.
Something just happened, though, that gives me a glimmer of hope
for understanding why I'm driven to compose. As I am typing this,
I am listening to music using the 'random shuffle' feature of
my iPod. It just played Bach's
Prelude #1 (in C)
from Book 1 of the Well-Tempered Clavier. I was stunned.
I have a personal history with this piece. I describe it
in the first chapter of
My Music Book:
As I came out of the Post Office lobby door, I was surprised to see my friend and neighbor Bob struggling to get out of the passenger side of his car. I was surprised because Bob is one of those people described using words like "hale" and "hearty". He was clearly having difficulty just trying to stand.
I had seen Bob about a month and a half ago at a holiday party,
and he was as hale and hearty as ever. After offering him assistance, I
asked the obvious questions about his health. This was his reply:
About halfway up the Turnpike, I remembered my CD player pre-loaded with Bach, his Prelude #1 in C Major (from The Well Tempered Clavier, Book I -- BWV 846). One of his really famous pieces. I'd heard it hundreds of times before. I'd played it as a kid taking piano lessons. No surprises for me in this piece.
Forget psychedelic drugs. Forget shamanistic trances. What I heard peeling off my CD that morning was the voice of God in my brain -- a direct connection to the infinite. Or at least that's how I thought it would be if in fact I did believe in God.
The pianist on this recording had taken the piece at a rather slow tempo, very deliberately spacing the music. Every note was endowed with a lambent radiance. It was as though the music instantiated a timeless logic that burned away the frailties of our corporeal selves, leaving a purity of being. Life can pass, but there is an eternity. I could hear it.
In the face of our desperate mortality and contemplation of our own definable limits, I think we all need to touch some kind of continuum, somehow. Through religion, through the theoretical certainty of science, or even through a self-chosen intentional ignorance, we need to deal with a material reality littered with statements like Bob's. I use the lens of music to focus my consciousness beyond the mundane and brutish aspects of day-to-day subsistence to a limpid sensing of the continual process of life.
To be totally honest, then, I have no idea why I'm here or why I do what I do, or where this is all leading. I do like Richard Rorty's pithy statement about the point of his philosophical pragmatism: we exist to increase human happiness.
At this time, I don't know that 'happiness' is exactly the right word, maybe more of an empathy, a connectedness. I think through music I have the best chance at communicating that. I want to tell everyone, "Listen! Listen! There are other people here!" We all live. We all die.
Several years ago, Daniel decided to make up his own religion. A
primary component was an ability to recall and fully relive moments
from your past life. I want to say more about this later, but not now.
I have this idea that if I start using this justification for my failings, then I will in fact have given over a part of my life to the myeloma. Weird, huh? I feel compelled to still be "me" -- faults, flaws and all -- as much as I can. This has to be part of the 'fight' when I tell people I plan to 'fight this thing'.
I confess I have used my health as an excuse a few times already, though. Usually it was probably justified. For example, a neighbor called last week to ask me to serve on our local Borough Planning Board. Given our small town's recent fractious politics, I really knew that I wouldn't be able to deal with the responsibilities. I declined by saying I was facing some difficult health issues ahead. Heck, I didn't even need to get cancer for that decision.
So I plan to do as much as I can. I'm working on a new piece, I just finished a paper for a festival/conference next month, and I'll be attending as many silly faculty meetings as possible. They don't even seem as silly anymore. I'm sure that at some point I will need the excuse, but I'd rather it be my excuse of last resort.
The rain left shortly after lunchtime, leaving us with a beautiful, sparkling, crisp January day. The sky so blue! The sun so yellow! And the sunset...! I'm seeing everything as a happy metaphor these days.
These events -- will everything change? For me, for Lian, for Jill, for Daniel? For my family and friends? For any of us? Of course, but the tendency to see events as marking "turning points", lines in the sand where nothing is the same once passed, overlooks the sequence that defines the arc of our lives. Events happen, but I'm not sure that discontinuity follows. We need to make sense of things. I don't truly believe that we're a postmodern species. I hope things go well, for Lian, for all of us. I really do.
Basically, he reaffirmed (pending the results of additional blood tests, a bone biopsy and PET scan [scheduled next week], and the potential course of my specific case) that it appeared I did have an early case, and that I was also a good candidate for aggressive therapy that can halt the disease. The more hopeful picture he painted comes from the new therapies that are now emerging for the treatment of myeloma. Just to give an idea of the encouraging news, I asked about the bone-marrow transplant possibility. Dr. Pearse said that he planned to harvest some of my stem cells for possible future use, but that the therapies for multiple myeloma had expanded so much in the past five years that this was just one potential approach to be evaluated (and used) if necessary. He also said that just a few years ago this was one of the only options available, but the past five years have been "very dramatic" in terms of battling the disease with emerging drugs and chemotherapies. I guess that some of the remission rates they have been observing from various chemo-combinations have been fairly amazing. He is also anticipating some "interesting" new approaches appearing soon.
So I'm ready to rock 'n roll! Dr. Pearse is going to start me quickly on a drug (bisphosphonate) that will help repair/prevent the bone damage that is taking place. One of the biggest clinical fears is of spinal column damage, and I haven't had any severe back pain... yet. He is also planning to start a combo-chemotherapy soon after my biopsy, etc. is done. It's heartening simply to have a course of action planned. After the disease has been stabilized, then we'll talk about future options for dealing with it all.
It seems that I will probably be "normal" for the coming months; he said I should be able to travel ok, and can possibly even handle my invitations to Japan and Australia ("see how you feel..."). All this makes me a little happy tonight. It's a good thing.
The rhythm of the day takes on a significance it never really had before. Even the simplest things, talking to Jill about picking up some milk on the way home, hearing my daughter's "hello dad!" on the phone as she describes her new experiences in France, Daniel ringing the 'snack-time' chime before bed, these all get endowed with an immanence that I could not grasp before.
This mindfulness expands outward and encompasses the larger connections that we use to build our lives, the human bridges we build to each other to define who we are. I've received so many nice e-mails, phone calls, expressions of concern that I've joked with a few friends: "I should have gotten a dread disease years ago!" Well, not really, but I do think we all need reminding of just what it is to be alive, to be a part of all... this. I wish that in my case the reminder wasn't quite so barbed.
One unfortunate by-product of
this heightened-awareness business is that
every little bodily quirk rapidly becomes part of THE SYMPTOMS.
I remember Jill going through this when she was diagnosed with
several years ago (yeah, we're just a health-insurer's dream couple!).
Is my mouth dry? OH NO! MY KIDNEYS ARE FAILING! Does my toe
hurt? GAD ZOOKS! THE DISEASE IS ADVANCING! I've given up some
of the intensity of my myeloma web-site reading, too much was starting
to go wrong with me. For acute, raging hypochondria, ignorance can be
I translate this future-plotting nonsense into other activities, too. A number of years ago, our doctor told me and Jill that it would be a good idea for us to start taking a quarter-tablet of aspirin every day. At certain times of the year, then, I take a batch of regular tablets from a bottle and split each one of them into four parts, counting out how many I've done in order to give us a supply for awhile. I usually count out enough to reach some 'magic date' in the future -- the end of the term, Daniel's last day of school, or perhaps after a weekend ending a planned trip. Today I counted enough to last until Lian's return in May.
As I counted the weeks and months with the aspirin fragments, I again pretended that I could see through time, that I knew what those days would be like. But partway through it hit me hard: I really didn't know. The last time I marked the projected passage of time with the aspirin, I had no idea that I would be writing a blog like this! There's a lot of very plain information that I don't have right now, chemotherapy options, what kind of myeloma I have. This information may radically change the future. I just don't know.
I often tell students I am advising: "Don't underestimate the fundamental randomness of life." However, I had no idea what "randomness" could actually mean. What's weird is that the one certainty we all have -- death -- is the one event that we are least prepared to encounter. It is 100% likely to occur, there is no random possibility that it won't. When it looms, however, it seems so... random. A big part of that random feeling is that we can't truly prepare for death, because it is so beyond our ability to imagine. Or so I think. If in fact we are able to imagine it, then I'll go with something like Daniel's 'recall' religion I mentioned earlier. Again, more on that later.
Oh how I want to see the future! But I want to see the future I want! There are some destinies that are surely better left unknown, so that we can try to trace our best possible path towards them. At the end of my appointment with Dr. Pearse last week, he asked me if I had any more questions. I said: "Can you tell me the future?" He smiled slightly, and talked again about the potential of new therapies and promising new ways of treating my disease. In essence, he was saying what Dr. Yi had said: "You a young guy -- live long time!" That's the fate I think I will choose to see.
This is indeed another 'informational' entry in the blog. Dr. Pearse pointed to a number of indicators that suggested I was Stage I (using the older staging system), with the only anomaly being the clinical symptoms I was showing (the bone lesions, the decreased immune system). In fact, he said that if these weren't present, he would probably be counseling me not to undergo therapy right now, opting instead to monitor the condition to see how it developed.
However, the bone/immune stuff implies an active myeloma, and he started me already on drug- and chemo-therapy. He was able to set me up (today!) for a bisphosphonate infusion, and I'm starting with a combination of drugs on monday (Revlimid, dexamethasone) that have shown great promise. These guys are moving fast. The bisphosphonate is used to deal with my bone problems, and the Revlimid/dexamethasone will get my immune system back in working order. There are a number of auxiliary drugs to go with these, mainly to combat some of the side effects. Dr. Pearse thinks that, given my otherwise-good state of health, I should be able to tolerate this therapy well. Hey hey!
In going over the potential side effects, dexamethasone (a steroid) has some of the more "fun" ones. Being a steroid, I can expect to 'bulk up' a little with its use, but unfortunately this is the anti-Schwarzenegger: I will probably gain weight, but no muscle. It also has the typical potential irritability and anxiety associated with steroid use. Dr. Pearse smiled when I accused him of wanting to turn me into an angry, fat man. Maybe I can get a talk-radio show.
Hope is springing eternal. I can expect to feel a little lousy for the next few days because of the bisphosphonate infusion, but I can live with that. Yeah.
I've never really talked too much about how I work to create my music, choosing instead to hide in discussions of the tools and techniques of computer music or some tired old 'social context' rhetoric. Since this piece is presently lodged in my mind, I thought it might be fun to explain how I do approach composing. If not now, when?
It's a little odd that I haven't been more forthcoming about how I work, given that I like to talk and explain things. Academia was a good place for me to land, job-wise. I can even explain why I haven't talked about my music much. The reason is simple: it's because what I do is really, really silly.
My music doesn't situate itself well in the academic or Big-Serious-Art worlds. Just listen, and it's obvious that I'm not unfolding any deep structural (or post-structural) constructs in my arrangement of sounds, I'm not excavating any radical intellectual or philosophical truths, I'm not surveying the edge of perceptual complexity. There is a whole lot that I'm not doing. If I'm honest with myself, I have to describe what I am doing with this word -- superficial.
A part of this superficiality is a legitimate by-product of what I like to listen for in music. Probably because of my involvement in the direct production of sound itself (recording studios, synthesizers, computer music), I find myself most entranced by the musical surface; the moment-to-moment connections made through tangible acoustic reality. I like sounds! I love 'em! I recall when I first heard Walter (Wendy) Carlos' Switched on Bach, it was the amazing and utterly new noises of the Moog synthesizer that captivated me. Sure it was Bach, and he's a genius and all, but those sounds!
At this point I could probably mount a defense of my shallow musical self by pointing out that timbre -- the 'surface' that I am attending to -- is possibly the most under-theorized aspects of music. I could expound about my belief that this is because it is a primal human percept, tied to our self-identity through the basic mechanisms of memory (I hear a trumpet... how do I know it is a trumpet?... how do I know it is being played medium-loud, but at a distance?... and why do I suddenly recall a bright spring day, I am nine years old, walking around our lake and hearing a medium-loud trumpet in the distance?). I could claim that reducing timbre to a 'parameter' for incorporation into some totalizing theory fundamentally destroys what it does. And if I were really clever I could quote the end of Wittgenstein's Tractatus Logico-Philosophicus: "Wovon man nicht sprechen kann, daruber muss man schweigen" ("Whereof one cannot speak, thereof one must be silent") and smile gnomically.
See what I'm doing? I'm pretending to be profound. Yeah, quote Wittgenstein, in the original German no less. Sheesh. The real frivolity about my music, though, comes from the actual working methodology I use.
For every musical decision I make, for all the timing/note/structure choices I consider, I construct a weird metaphorical symbolism that allows me to "justify" what I do. The sounds, notes, melodies and chords I work with literally become entities that have a defined representational life. I suspect this comes from my youth, when I used to anthropomorphize virtually everything. I would see a bicycle left out in the rain and feel terrible about how badly the bike "felt". I remember waking up in the middle of the night a half-year after I had lost one of my model rockets in our nearby woods worrying that the rocket(!) was cold (six months after the abortive launch put us in mid-winter). All of my toys had voices and inner lives. I still do this, Lian and Daniel can tell about 'talking the cowboy' or 'the idea girl'.
With mm-1, for example, I use four chords. Me, Jill, Lian, Daniel -- my immediate existence. They cycle, chaconne-like, I don't want them to end. For the choral sound I start out with a simple recording of my own voice singing "aaaah". Why? It's me. It's my voice. I want to live forever. I don't want to die. I slather on a lot of reverberance, it gives the sounds a location, a distance, a space. Paul Lansky challenged me to write a piece without reverb and echo, but for now I want to take refuge in the cathedral. Then I focus on the timbre by centering several digital filters. Get it? Focus on parts of life? This actually makes sense to me! The ticking of the marimba-like counterpoint, the workings of existence, it all fits into my bizarro metaphor-world. Totally arbitrary to be sure, and totally divorced from any musically-grounded structural system, but it all seems like it is real.
The random semiosis gets worse. The last section of mm-1, with the mock-grandiose chords is a direct manifestation of my middle-brow, Lord of the Rings-watching personal culture. I wanted something that sounded vaguely 'courageous'. The upward-moving bass coupled with the chiming banded-waveguide tones does that, or so I tell myself. I think I can use a little 'courage' right now even if I am just making it up. I don't resolve the final chord. Like I said, I want to live.
Pretty ridiculous, huh? It's not just this piece, either. Here's an excerpt from a piece I did a year or so ago about local circumstances in Roosevelt: guns-excerpt. For my town neighbors in-the-know, you will hear the sound of a truck followed by a siren and then by angry voices. These are 1) greywater, 2) first-aid siren location, 3) Borough Council meeting. A direct symbolic mapping. (if you are interested, here are links to the original guns song. In it I pretend to be a young rock star again.)
This isn't a compositional method. It can't be analyzed, it can't be taught, it doesn't withstand any scrutiny at all. I'm not being ironic about it either, so it can't even hold up as an absurdist commentary on the farcical nature of life. It's ludicrous. The sounds have meaning, but that meaning has currency only in my own mind.
As a result, I don't know where my music fits in the world. I pretty much gave up trying to figure it out, and sometimes I get sad about that. I will continue to spend hours making these pieces, then I play them to myself to remind me of who I was. At least it gives me something to do, especially during times like the past two days when I felt like I had the flu but I knew that I didn't.
Fortunately we seem to have good insurance. Thus far things have gone relatively smoothly for us. The people on the other end of my phone calls have been terrific, and all seems set for me to receive the drugs and start tomorrow. We probably have one of those "gold-plated" insurance policies that our ridiculous president derided in the State of the Union address two nights ago. "Gold-plated", which apparently means our health plan is actually working as it should. George W. Bush will never have to wait for a phone call telling him if he can afford access to medicine or therapy that can prolong his life. I cannot imagine what it would be like to go through this experience with the crushing realization that you may not be able to pay for the treatment you require.
All of this begs a certain question for me, the larger question of how this expense is warranted. Even though I find it unimaginable, there are in truth millions of people for whom my therapy is utterly out of reach. What did I do to deserve this elite access? I've tangled with this issue before. I am sharply aware of the amazing good fortune I've had in life. Here is a fairly old article I wrote back in 1990. The earnest attempt at self-justification is pretty embarrassing now, but the motivation present still haunts me today. Reading Tracy Kidder's Mountains Beyond Mountains, a portrait of physician Paul Farmer (Partners in Health) this past summer made stark the disparity between my randomly-happy circumstances and the conditions faced by about 99% of the rest of the world. Myeloma or not, I am One Lucky Guy.
So should I decline my medication in favor of some strangely altruistic notion of global health equity? I don't think so, because I think the premise of the question is wrong. Assuming that current health expenditures form a zero-sum game ignores the unmitigated insanity of our misguided monetary priorities. In saying this, I'm not attacking our healthcare system, even though I'm sure there are some bad actors giving rise to inflated costs. By and large, though, everyone I know who is a medical researcher, doctor, or health-care provider doesn't do the work for "the money". I also know that drugs are fantastically expensive to develop, and right now I'm just delighted that an investment has been made to fight a rare disease like multiple myeloma.
What I am decrying is the larger budgetary picture. Our five-year folly in Iraq would burn through the entire endowment of my employer, Columbia University, in a matter of weeks. What research have we missed? Who might have benefitted? And how in the WORLD can the money we have wasted there, and elsewhere, be 'justified' in the face of 500,000+ deaths every year from cancer? Shame! Shame!
Oh I could go on about this, and in fact I plan to, but not here. However, my indignation-turning-into-action points to another reason not to bind myself to an eccentric self-denial fantasy. Yes, I am a lucky guy. Yes, my sitting here in Roosevelt, New Jersey is the result of a series of serendipitous, unplanned and uncanny events. Yes, this result is, by any measure of comparison with the rest of the world, grossly unfair.
What I can do is to embrace the randomness, to acknowledge the
string of happy accidents that brought me here, cancer and all,
and ask myself: What can I do from here? I'm not a person
who believes in prayer, but I have been taking moments throughout
recent days to focus on envisioning a future. I want more time,
selfishly to see the standard set of life-events we all hope to
witness, but also because I am trying to rededicate myself to principles
I believe in. I think I had lost track of how I can answer
what can I do from here? in favor of a more insular,
safer, and diminished existence. I hope it is not too late.
This is the quality of experience I want to pass on to my children, what it
is to be alive, to be standing in the gentle snow, breathing, listening,
timeless. But perhaps this awareness
has to be born in mortal knowledge, and I want to spare
them that severe realization for as long as I can.
My Revlimid arrived this morning, so I decided to start the chemotherapy treatment. Part of the 'cocktail' that seems very effective against multiple myeloma is Revlimid combined with a very high dose (40 mg!) of a strong steroid, Dexamethasone. I think I wrote about all this earlier in this blog, so I'm repeating myself. What the heck. I'm also taking a powerful anti-stomach-inflammatory for digestion of these drugs, as well as a prophylactic sulfa drug to combat potential infections (the Revlimid will be wreaking havoc -- good havoc -- with my immune system in the coming months).
This afternoon I felt pretty lethargic, probably the Revlimid but it may have been just my mental state. This evening we attended Daniel's Tae Kwon Do belt-test. Proud parent I am: he's only a few levels below black belt now! Yikes! The test was long, and I was slowly drifting off to night-time oblivion, or so I thought.
We picked up some terrific sushi from our local gourmet sushi restaurant (the Sushi King), and partway through my intake of food the steroid really began to take off. Yow! Yikes! Look, I even put in a link to the restaurant! I'm using exclamation! points! in! my! writing!
I noticed halfway through dinner that I was feeling really... good... in an odd way, and enough of my rational thought processing was left to dredge up my old pharmacological knowledge to realize it was the massive steroid dose that was affecting me. I don't think I realized how much I was affected until I noticed that I had made three circuits around the dining room table to pick up our knives and forks to take to the kitchen for cleaning. I was heading towards my fourth lap when I realized that I wasn't being very efficient about things. Just read those last few sentences! I'm rambling!
Yikes, what's to come of all this? I hope these drugs are working! Fight those stupid T-cells! Bash that immunoglobulin-G into submission! The dexamethosone is 'pulsed' -- I go four days of high dose (!!!!!!!) and then three days off. The steroid is usually used to mitigate the bad side-effects of heavy tumor-reducing chemotherapies in more "traditional" cancers, but it has been shown to have direct efficacy in multiple myeloma. I will be using this regimen until my disease is in remission; hopefully only a couple of months.
I realize this will probably be embarrassing to read in the morning, but I'm hewing to my little-or-no editing policy to capture this experience. Now I think I will go write e-mail to EVERY SINGLE PERSON THAT I KNOW, although I'm beginning to feel the crash coming. Maybe I won't need the Ambien after all.
My oh my, the mundane aspects of living, but these are the qualia we use to form our daily experience:
Now I'm convinced that I will be able to claim my share of future memories, even though I know, I know: "Don't underestimate the fundamental randomness of life." Why is this memory-stashing so important to me? Partly I believe fundamentally that this is how we construct ourselves, partly it's because it's fun (I like my life!), and perhaps it is because I think I am a full-fledged convert to my son Daniel's religion.
One of the great joys in my life has been the family dinner conversations that we have had through the years. We ramble on about all kinds of subjects; Cantor's transfinite numbers, the nature of reality, alchemy (and dragons!), why Finnegan's Wake is so funny, Greeks vs. Romans, nothing is safe from our discussion. Probably because I'm such a total dilettante about these things (the freedoms of being a musician), I'm able to talk for hours with our kids. Poor Jill! :-) And probably someday Lian and Daniel will be recounting to their friends: "Our Dad was a maniac! We talked about negative numbers at dinnertime!"
One night we were exploring relativity and the shifting nature of causality. I was reading Brian Greene's The Fabric of the Cosmos at the time (hence the dinnertime discursis), and I got it out to show a depiction of four-dimensional 'time-slices' that was illustrated in the book. Daniel connected the shifting ordering of the time-slices with recent dialogues we had been having about life after death, and said: "Dad, I think I know what happens when you die." He went on to describe how you essentially get the equivalent of a TV remote channel-changer, and you can go back to revisit all the different slices of your life. You want to work to store "good" memories for obvious reasons. Hey, shades of Plato! Eastern Karma! I like this! Daniel has since elaborated his concepts, and now there are different cities you can visit depending on how ethical you were in life, and different places you can tune in. So I'm working hard to fix firmly the good memories so my channel-changer will be all loaded up.
I like Daniel's religion because it operates on our deep desire for good experiences, and it supplies a solid rationale for ethical and moral striving. Of course this is informed by a pre-existing notion of 'good experiences' that dovetails with these strivings, but ya gotta start somewhere. I also think this is one of the primary mechanisms behind the power I feel in music. We hear, we remember. I used to think (and still do) that music's power derived from our ability to use it to become part of a real or imagined community -- I listen to Irish folk music and I pretend like I'm hoisting a Guinness in a boisterous Dublin pub. What I'm probably doing is more like activating virtual "memories" that I have fashioned based on my own fantasy of Dublin-pub camaraderie. I've never been to Dublin... "Yet now I know how the heather looks, And what a wave must be."
There are some memories I'm not sure how to categorize, though. Good? Bad? Relive them? Revisit the inner feelings? Crisp in my mind is the image of Lian running with her backpack to the French Embassy (we were running a little late in arriving) to get her student visa for her stay in Nantes, hair flying as she strode boldly into her own future; Daniel halting me on the path in the woods to school in the fourth grade, just shy of being seen from the playground: "This is close enough Dad, I can go on from here alone." What do I do with these sharply-etched moments of transformation? "Bittersweet" is just too feeble a word to describe these points of arrival/departure.
Yes I will keep them. Life in all its fullness and glory.
I've made a habit of stopping in to sit in this place for a short time during my visits. I find the unadorned space quietly soothing. At a deeper level, however, I don't really know why I'm there. I don't pray, I don't entreat, I don't routinely play the 'bargain game' with some omniscient being who might capriciously take my cancer away. I sit and think, and often what I think is the question "why am I sitting here and thinking?"
I have a couple of answers to offer. The first has to do with a consciousness of connection -- a link I feel to the linear thread of life. Probably because of the medieval feel of the chapel, I imagine the scope of human history and the innumerable personal stories that comprise that scale.
These memories and stories! I remember walking up the stairs at Nassau Hall when I turned in my application to graduate school at Princeton. In those days before routine use of FedEx, I hand-delivered it. I'm such an unbelievable procrastinator, I dropped it at the admissions office about an hour before the deadline. The stone stairs in Nassau Hall are well-worn with use, the middle part of each step about an inch down from the edges. As I ascended to the second floor, I thought: "wow, scholars have trod upon these stairs for centuries!" I'm certain that the University maintains this 'look and feel' precisely to instill this historical feeling. And it is this spirit that I contact when I sit in the little chapel. People have come, people have gone, but there is something firm in the fact of a past. I find comfort in this awareness.
I also answer my "why do I sit?" question by imagining the purpose of the chapel. Throughout the world, we have constructed locations designed to take us out of the ordinary pattern of life. From the Shinto shrine at the Mt. Asama volcano (in the fog!) to the local cathedral in Cahors, there have been places that have generated an overpowering recognition of a kind of 'sacredness' for me. These are places of intense personal focus, where the present really seems...present.
It's hard not to wander off into new-agey prose about "being in the moment" with all this, and much of what I'm writing now is colored by the weirdness of the fierce drugs I'm taking (I pretty much feel uncommonly strange all the time now). But I do wonder about these sacred spaces that we have built. The concentration of perception that these sites engender, it makes me believe that maybe our primary purpose is to bear witness to an objective reality that otherwise wouldn't exist. The holy experience of pure and simple existence alone is the whole point. Does that make any sense? We live to validate the "real world", and those moments when I am doing almost nothing BUT that are positively glorious. All pain sloughs away, fear has no substance.
Like this past Tuesday night, I left my office at Columbia about 11 PM. A small snowburst was taking place, and the lights on college walk were diffracted through thousands of snowflakes. I was there, I saw this and I felt this. It was marvelous to be alive. I am on some powerful drugs.
When I woke these words were spilling out of my mind. I was still
tired, so I lay in bed trying to memorize them, but there were too
many. I ran upstairs to type them into my laptop. Whew, I think
I made it! Today I start back with the four-day 'pulse' of the
high-dose steroids (4 days on/4 days off). Good grief, I wonder
what part of dreamland I will inhabit tonight? I thought
I might have bizarre dreams with the chemotherapy drugs, but
(once again) I didn't expect this.
The injection of the metabolic marker for the scan was a little unnerving, as the syringe containing the radioactive glucose was surrounded by an inch-thick lead shielding. Hey, inject that into me! But the scan itself was almost fun. They trundled me onto a flat bed-like platform that inched me back and forth through a large circular ring. The whole affair lasted several hours, like a sensationally slow amusement park ride. They played Bach's Brandenburg Concertos on a small stereo in the corner of the room (my choice), and the whole escapade was very relaxing. Highly recommended.
Here are the current facts: The old way of gauging the prognosis for myeloma-sufferers was to use a "staged" rating system, dating back to the mid-1970's. Stage 3 meant active, aggressive disease and the outlook was probably six months to a year. Stage 1 meant it was latent, probably no treatment even indicated ('wait and see'). Everything else was Stage 2. What they can do now, though -- and this is so cool! -- is to examine the genetic character of your individual cancer cells. Mine showed a translocation of chromosome 11 to chromosome 14, which was consistent with my clinical presentation. This particular brand of MM tends to attack boney tissue early. Indeed, the results from my PET scan last week showed that I had more lesions than I realized (through my spine and even into my skull). I have been lucky that my pain hasn't been worse.
Sounds awful, right? But here are the two aspects that make me feel deeply happy, even way underneath my current chemotherapeutic fog. 1. This is a slowly-growing myeloma; 2. It responds well to drug intervention. Slowly-growing. Responds well. I can live with that!
Even the PET scan revealed moderately good news. The metabolic rate around the lesions wasn't high, so the attack on my bones has lessened. The bisphosphonate infusions I am receiving should also halt this progression.
Among the many mind-bending psychological reactions I have had to my initial diagnosis, two paradoxical feelings keep surfacing. The first is that I still can't quite believe that all this is happening to me, and that somehow the mask will be removed and all will be revealed as a strange and unsettling error. The second is that, despite keeping positive attitude, I occasionally lapse into thinking that I won't really be around much longer. So I was either going to live forever or die in a few months.
Today's news is the first really tangible information for me that gives me a path forward. I need to accommodate myself now to the welcome idea that I can get things done, that my hopes for the future stand some chance of realization. There is so much to do! With the initial shock of the myeloma-confirmation, I really regretted all of the time I had wasted in procrastination and simple, stupid laziness. I am certain that I will continue to be a lazy, stupid procrastinator, but now I will have a sharply-focussed guilt to goad me into getting a bit more done than I normally would have.
I stopped by the little chapel on the way out of the hospital again. There is a book on the single table in the front of the room where people can write thoughts, wishes, prayers. I read a few in my first visit, and they were genuinely depressing. Very agonizing and painful personal thoughts and experiences. I hadn't looked at it again. Today I did, though, and there were a number of hopeful stories related. I sincerely wrote two words myself in the book: "Thank you." The gift of time.
This memory visits me with some frequency, and there is something about it I can't quite grasp. I was young, but the scene seems tinged with, I don't know, "yearning" or "anticipation" are just too strong as descriptors, and "desire" or "expectancy" credits my nine-year-old cognitive capabilities too much. But there is something about it...
This morning I woke up and watched our sky as it lightened to blue, a different blue, but my old memory recurred. Here I was, in my home, in New Jersey. How the heck did this happen? What unbelievably improbable series of events led me here?
Maybe that's what permeates my original memory. I project backwards,
and the blue of the sky this morning reverberates through an impossible
series of time-slices to the blue sky of my early, semi-formed
self. That self then echoes forward through to me here, signaling
a then-nascent awareness of something starting. The sound of the jets,
the different sky-blues, here I am. Again, how the heck did this happen?
I've done several of these 'open-ended' music applications. I've put most of them on-line here. I really like the idea of things that don't have a determinate ending, especially right about now. Plus I enjoy a slowly-shifting audio background when I work or relax. I'm too lazy to keep getting up to change my CD player. My iPod skills are semi-negligible; even if I managed to set up a playlist, the tunes played will always be acoustically the same.
That is the challenge, to design a generative algorithm that imbeds enough change to keep the music interesting while still maintaining musical coherence. For mm-2 (snow), I attempt to keep the local interest in the music active by using filters to create a changing sonic tapestry in the foreground. I try to sustain longer-term interest by altering the chord harmonies. I'm using an algorithmicized version of a root-shifting technique I am certain I have misunderstood from Paul Lansky's music. Thanks, Paul!
This software was motivated by several people who had listened to my mm-1 piece, and said "hey, I wish it were longer!" I really liked the sound of the choir-ey chords in mm-1, so I decided to use them as a basis for a very(!) extended piece. I've always been attracted to music that centers upon timbre. As I said before, I like sounds! The slowly-changing filters let me zero in on particular audio attributes of the choir, I can tease out individual pitches or pitch-ranges from the sonic spectrum. A focus, a meditation, a concentrated release from corporeality.
When I was younger, I listened to a lot of 'minimalist' music, mainly because of this timbral connection, I think. The fixed process underlying many minimalist compositions foregrounds timbre because it is often the only unpredictively-moving element of the music. My mom referred to most of the minimalist works I heard in my youth as 'test pattern music'. I'm still zoning, even after all these years.
Anyhow, I hope people can enjoy this. At least I do, which is probably a good thing. I start it up, I sit back, I drift away.
I got all situated, the chemicals were slowly pulsing into my vein, I could see out the window at the grey snow/sleet streaking down, and I thought "hey, I think I'll listen to the Kyrie from Mozart's Great Mass in C Minor." Now there's a cheery tune for sitting in the chemotherapy suite.
I have a semi-embarrassing story to tell about this piece. When I first started working at Columbia, I was assigned the low-totem-pole task of teaching a section of our History of Western Classical Music course at 9 AM. I'll be honest, I really didn't know much history of western classical music. My undergraduate degree is in pharmacology, and the work I did as a graduate student at Princeton was mainly focused on composition and computer music. So I sort of made things up for the class as I went along. I still do.
I had asked one of my colleagues for advice about how to give my class a little coherence. He suggested that I might try to use a common musical form as a way of articulating the musicological changes that took place. I decided to use the religious "mass" as my touchstone work, because it generally persisted throughout the centuries as an entity that reflected western musical evolution.
Towards the end of February, class was about to start, and I knew I was supposed to teach Mozart that day. Again being honest, I will confess that I had never heard any Mozart masses. I frantically stopped by our record library and grabbed the Great Mass. Surely it would be Great, right? I started the session by talking about Mozart, relating the common semi-apocryphal anecdotes, discussing how fate conspired to extinguish his incandescence at a way-too-early age, and then I put on the Kyrie.
Fate? Unyielding, impersonal god-ness? Futile mortality? Pathetic existence? Here we were, sitting in a fluorescently-lit classroom at 9:30 AM, and I was totally losing it. I had to call a break in the class because I was afraid I would cry. The unrestrained, resolute power I heard in this music was pushing me over the edge.
That's what the Great Mass will do to me. And my pyschological punishment-gluttony at Weill-Cornell yesterday didn't stop with the terminal minor chord of the Mozart, either. I followed the Great Mass with the aria Dido's Lament from Henry Purcell's baroque opera Dido and Aeneas. Dido sings this as she lays dying by her own hand, her lover Aeneas has chosen duty and has returned to Carthage. What hopeful words does Purcell set in this piece? "Remember me... remember me... but ah! forget my fate!"
Oh yeah. Heartwarming songs to play as I sit there hoping my bones heal. Why do I do this to myself? Why did I actively seek to reinforce an underlying despair? Is there something about me that just enjoys hanging out in the self-pity wallows?
Perhaps, but there is also something I find oddly uplifting about these experiences. It's not the Greek/Romantic "catharsis" thing, although there are probably elements of kathairein that play a role. It's more that I am able to connect through this music to the lived experience of others, and that realization helps me negotiate my current circumstances. Mozart lived, he translated his inner sense of powerlessness into a language I can viscerally understand. Almost four hundred years ago, Purcell asked us to remember him... and we still do. What an intensely human thing to desire! I can "relate", and the relation produces for me a connectedness. It helps.
I also get this connectedness from good friends who have been in touch after hearing about my diagnosis. I am amazed at how many others are also dealing with difficult health and life issues; friends, former students, colleagues whom I had no idea were struggling with serious problems. I think it was a good idea to "go public" with my disease. Knowing that others are also facing life squarely, I gain additional hope. We are a social species.
Fortunately I was able to point my iPod to Eric Satie's Gymnopedies to bring me back from the brink of total fate meltdown in the cancer ward. The nicely floating melancholia I hear in Satie's music was able to drift me back up from the "remember me" depths. From there I spent the afternoon zoning out with some of my friend Gregory Taylor's extended laptop improvisations as well as my own random/ambient algorithmic pieces. Got some good reading done, too. All in all not an unpleasant day.
On the way home I listened to some Nine Inch Nails and Nirvana,
though. I wanted to blitz out a little, probably because I knew how
I would be feeling today.
However, this is becoming longer than I anticipated -- yay! -- and if the Revlimid works it may continue. I'm actually enjoying writing this. I did want it to be read as a linear testament, though, so I don't really want to split it off into a fragmented set of blog-entries like the way most blog software tends to do. I decided to set up the links at the top so that it's easy to jump to a particular one.
I wonder what will happen with all this? I recall finding in my grandparent's house in Iowa a short paper written by one of my great-ancestors. In it, he or she had described briefly the trip through Canada as the family travelled to Iowa, the first encounter with Native Americans, the strangeness of the big land. I was totally enthralled, captivated by the notion of a really living, directly personal history. Who knows what will transpire with digital media, but perhaps these words can reach across time to a future great-great-great-grandchild. If so: hi there!
Yes I am more optimistic than I was.
I step onto the snow of the path, and unexpectedly I don't sink down into the several inches of frozen white. The cold is deep enough today that a hard, icy crust has formed on the top, keeping me above the ground.
I think about what's underneath the crust. I was up at Columbia earlier this week. I listened to some of the news/gossip/academic tempest-battles, the things that used to commandeer my mind and capture my time. Someday these things will probably again do this to me, but now they seem locked so far away, remote below a frozen barrier. Someday I will not be taking the drugs, and I will return to 'normal', but perhaps I don't want to lose all of the disconnected feelings I am having. The pettiness, the inconsequentials, all encased in hard, cold ice. I slide above them now -- vapor, wind.
Over on the sidewalk by the school, the fractal patterns caused by salt-enhanced melting look like a landscape seen from high in a plane. I look down. I can walk on water. I can fly.
I had started up my iTunes to have some music playing in the background, and it was this piece that got me. The music is What a Blast by two incredible mandolinists, Mike Marshall and Chris Thile (from the CD Into the Cauldron).
Two mandolins. These are small, almost tiny instruments. Fragile. But listen to the piece! They're so... bold, so... grandiose! They're so... happy! They're trying so hard!
See, I hear this music, and I hear life. It's so tenuous, but so tenacious. We're all balanced on a precarious edge, every moment, every day. All it takes is a simple shift, a translocation of a chromosome, a t11 moves to a t14, and the balance changes.
Two delicate instruments against all odds, making a brilliant, glorious, radiant sound. It's totally thrilling! These things I listen for in music. What's strange is that we don't talk about these essential qualities in our music seminars, we don't write about them in our journals. Probably because we can't. Instead, we couch our "appreciation" in intellectual terms, using a structured and parameterized language to assign merit or make arbitrary distinctions.
The things we can't say, the features we can't describe, the way these two mandolins make me feel magnificent, that's the real stuff.
The chords strum. I breathe deeply. I am downright happy to be alive.
Minnesota is experiencing the most significant snowfall of the season this weekend. The initial forecast was partly sunny and surprisingly mild through the weekend, but things do have a way of changing. Already today they apparently have had 3-4 inches of snow along with some dandy freezing rain/sleet. The storm will intensify tonight and the total snowfall accumulation by the time I was to fly back is expected to be about 1.5-2 feet. To top it all off are winds gusting up to 40 mph. Sure, my plane was the one that would magically make it out with no problems.
The handwriting was on the wall. I could stay, possibly going ahead and reserving a flight for early Monday and hoping that it would be fine, or I could rebook for Friday evening and head home. I chose the latter for reasons I'll discuss more below.
At least I did get a chance to see a few of the Spark festivities, and I did fulfill most of my conference obligations. More importantly to me, I was able to see many of the friends and former students who were participating in the conference. Doug Geers, one of those friendly former students and Spark Conference Director, did a wonderful job of turning the event into a very sociable affair. I doubt he could do otherwise knowing the kind of guy he is.
One of the surprising characteristics of my 'pulsed' drug therapy that I discovered at the Spark festival is that the chemo doesn't wear off quickly. My dosage schedule is moderately complex, with several different cycles of drugs working in parallel. I believe this is to allow my body to adjust to the new chemical environment, and also to prevent me from becoming too dependent on some of the drugs. During the week just prior to Spark (and the first few days of the festival itself), I was not taking the heavier-duty chemo drugs. What I didn't realize is that I would then be going through a mini-withdrawal. I still felt decidedly weird all the time.
Then it occurred to me: I will never be "normal" again. Life has unalterably changed. Death can literally be imminent, in a manner steeped in foreknowledge. Visits to the doctor take on a depth of meaning they never had before. What will I learn this time? Jill is a member of the Science Advisory Board for the US EPA, and was attending an SAB meeting in Washington this past week. One of the new members was the Chair of Pathology at Brown University, and she had heard of the new therapies available for treating multiple myeloma. She described them as "miracle drugs for that disease" (oh I like that description!) and that they had the potential to turn a virtual 2-year death sentence to a chronically manageable condition. Still, for the rest of my life I will have MM, and the doctor visits can tip the balance of life this way, or that way.
Jill maintains that I never really was "normal", but will I add to my academic composer abnormalities this disconnected, alienated, 'floaty' feeling? What is "normal"? Do the drugs alter who I am? These questions lead down the path that launched a thousand Philip K. Dick and Stanislaw Lem sci-fi stories -- I think I've read them all. It's whole lot more real to be living them.
As I mentioned earlier, there are aspects of the drug-induced mental state that maybe I don't want to forget. I never read the popular book Listening to Prozac, and I'm not convinced that Prozac is the drug I'd like to 'listen' to, but I can understand the sentiment that altered states of consciousness do have potential lessons imbedded within. Heck, any span of consciousness we can recall does this: "that certainly was a Learning Experience!"
Case in point: When I was at the airport yesterday, a very self-important business bozo was involved in a dispute with the hapless gate agent. From what I could unfortunately overhear, the guy was being totally unreasonable. I won't go into the sordid details, but I do have to admire the training given to Continental Airlines personnel. In the past when I've watched a scene like this unfold, my reptilian-brain bubbles up and I think: "What a jerk. I oughta go punch him in the nose", or some similarly enlightened idea. This time my filtered-through-a-distance reaction was: "What jerk. His problems are so unbelievably petty. He is an uncommonly silly person", and the whole episode just made me want to laugh. I'd like to be able to hang on to that way of dealing with pompous idiots. I probably won't though.
To be sure, there are the things I don't want to carry along. Obviously there are those entertaining chemotherapy-related physical manifestations. However, to me It is the more insidious mental side-effects that are more disturbing. My friend and neighbor Wiska was diagnosed with a thankfully benign brain tumor about the same time I learned of my myeloma. She was also given high-dosage steroids to shrink the size of the tumor prior to making decisions about radiology or surgery to excise it. We had both been warned about the potential for anxiety or 'rage' attacks accompanying steroid usage. These effects are also the stuff of tabloid reports about a number of our bulkier athletes. It actually happened to Wiska. She teaches piano lessons, and related to me a recent time when one of her students' mothers pushed her over the edge. She lost total control and began screaming at the woman. She said it was very strange, because she could see herself doing this, and she realized it was the action of the drugs, but she could do nothing to stop it. Finally she regained control and explained her situation.
My untoward reactions are more on the anxiety side. Dr. Pearse gave me a prescription for Lorezepam with the first installment of my chemo drugs. This told me that major chemical activity was going to be taking place in my bloodstream -- drugs intended to counteract the effects of other drugs. I haven't used it because I've had to take benzodiazepines in the past as muscle-relaxants, and they really knock me down. I really haven't felt the need to use the Lorezepam either, except on a few occasions.
One of these was my decision to leave the Spark conference early to avoid the impending snowstorm. As noted above, I hated to cancel the paper I was scheduled to give, and I was very sorry to miss performances by people I know and admire. I was also having a great time! But I only had enough of my cancer-fighting drugs to last me through Sunday, and I was worried about maintaining my regimen. The Weill-Cornell people really stressed the importance of doing this. I also realized that it would have been very difficult for me to tolerate standing in long airport lines trying to rebook and figure out how to get back home to Newark. In the past this would not have been a big problem for me; been there/done that. I now know that I do have real physical limits. They don't go away.
Despite these realizations, I spent far too much time agonizing over the decision. Once made, that agony (a bit too strong a word, really) translated into an intense anxiety about my rebooked flight out of Minneapolis on Friday night. I had a television interview Friday afternoon that went a little long. I became convinced that I wouldn't make it to the airport on time. Obviously I did, and there was in fact plenty of time to spare. However, once I got to the airport, I then became totally convinced that my flight wouldn't leave that night, or that it would be delayed by high winds in Newark long enough to allow the blizzard to move in. The flight was showing a slight delay due to these winds when I checked in, and I asked the gate agent if in fact she thought the flight would leave that evening. She laughed. Of course it would.
At that point, I had this fantasy -- I could see myself several hours hence, right after the flight had indeed been cancelled. I was brandishing a fistful of potent cancer drug prescriptions in the face of the gate agent, screaming "IF YOU DON'T GET ME TO THE EAST COAST IN THREE HOURS I WILL FALL DOWN AND DIE RIGHT HERE IN FRONT OF YOU!!!!!!! I HAVE A TERRIBLE DISEASE!!!!!!!"
Anxiety. I got home fine. There was a slight delay, nothing major. The Continental people did a great job. I'm now convinced I made the right choice to come home early, too. It looks like the storm is a doozey.
It was an uncommon and rather unnerving interview. Peter sets up his camera, trains it directly on your face, and then asks all questions from off-camera. For an hour! I'm sure my interview is staggeringly boring to watch, but Peter's intelligent and sensitive questions made the dialogue itself very enjoyable.
During the course of the conversation, Peter asked if I had dealt with any 'illness' issues. I think he was imagining a connection between something like a bipolar disorder and creativity, but he didn't realize he had hit a big recent issue in my life. I had to decide if I should dodge the query or answer truthfully, and I chose the path of veracity. Peter was such a tactful interrogator that he didn't follow the easy way and turn the interview into a discussion of disease, but it did inform the rest of the talk in various guises, especially about subjects like the imperative I now feel to get things done.
I asked Peter after our session if he knew about my physical situation beforehand, and he said: "if I had, I would not have asked you about it." In retrospect, I'm glad it came up, but I'm also glad that it didn't totally dominate the interview. Right now I read back through a lot of this blog, the mass of text that it is becoming, and my fears are realized -- it pretty much is about The Disease. I guess that's to be expected, because it is something that is really noticeable to me right now, all the time. The good angle to this self-centered, egoistic exercise in narcissistic prose is the opportunity for reflection, the chance to write and discuss those Big Life Questions that don't normally arise in casual discourse. When your life is literally on the line, you start thinking about them.
When Jill received her diagnosis of MS a few years ago, her response was very different than mine. As a composer, a part of my job is to translate experience, to put down in sound fragments of my life. Now I sit at home, bending my creative work to register my entanglement with cancer. Jill had a much more pragmatic reaction, basically continuing her life as strongly as ever. I can summarize her attitude as: "well, let's deal with it." And in fact, that's what you have to do. Otherwise you can succumb to a total despair, to a shutdown of the processes you need to be alive. For all my heart-on-my-sleeve verbiage in this blog, it was the internal adoption of Jill's "deal with it" credo that has kept me going. I am a lucky man to have married the woman I did!
I ended that sentence with something else I find a little annoying, or maybe embarrassing is a better word, as I read back through what I have written. As I stated at the outset, I haven't done much editing on this blog. The punctuation! So many exclamation points! I surely am so excited! I think I'll blame it all on the drugs. They leave me breathless, both physically and verbally.
I had the "rage" reaction that Dr. Pearse and others had warned me about with the heavy steroids. I think I extended myself a little too much this week, lots of meetings scheduled after the Spark festival, etc. Going into my graduate seminar Tuesday evening I was feeling a bit drained. I had asked Johnathan Lee and Cathy Cox to talk about their work and life at Tamagawa University in Japan. Both are former doctoral students who joined Akira Takaoka (another former student) on the faculty at Tamagawa to build a new computer music/media arts program. Our intention is to work closely with them to build a strong relationship between Tamagawa and Columbia.
Poor Johnathan had become sucked into the travel maelstrom trying to return from the blizzard in Minneapolis. He had finally arrived in New York at 4 AM(!) earlier that day. I was hoping for a painless setup so that he and Cathy could relax and enjoy the seminar. We started the class, connected his laptop to our overhead computer projector, and then... nothing. Anyone who has ever had to deal with the unbelievably bad human interface of these projectors can already figure where the start of my rage began. The projector would not recognize that a computer had been connected to it. Of course the remote unit for the projector didn't work, and as my good-natured teaching assistant Victor Adan stood heroically on the seminar table to toggle the projector, I felt my pulse start to race and my vision begin to constrict.
It soon became obvious that the projector would not be projecting anytime soon, so Victor and I went to the CMC equipment room to get one of our portable projectors. I think Victor detected that I was undergoing some kind of incredible-hulk-like organic change, because he gently suggested that I go back to the seminar room as he retrieved the equipment. I think my comment as I left him was "I'm really close to losing it here, Victor." This was a true statement.
Victor returned with the other projector, we unpacked it, set it up, and the one-of-a-kind, only-this-model, incredibly-stupid-design-decision video cable for the projector was gone. Normally this wouldn't be a big deal. I would say "oh darn" and we would go try another projector or find another solution. This time, though, my entire being focused into a single point of rage directed at that missing video cable. I jumped up from my chair and let loose a stream of profanities -- at the top of my lungs -- that could probably be heard throughout the building.
It was a totally bizarre feeling! My friend Wiska had a reaction like this (see the earlier 2/24/2007 text). She described being able to see herself, outside herself, as she screamed. That wasn't true in my case. I can't really tell what happened exactly, because some cerebellar level of my being took total control of my body and my consciousness. I didn't have the sense of being 'outside myself', because it was as if I didn't exist at all, completely subsumed into a construct built entirely of primal, emotional fury. After twenty seconds or so, I stopped and noticed that everyone was sitting very quietly and staring straight ahead, and I was able to reconstruct what had happened. Profound embarrassment and profuse apologies quickly followed.
Afterwards I was thinking about how little we actually do 'control'
in ourselves. The entity that I call "me" is just a loose confederation
of cooperating cells and molecules, a contingent arrangement offering
a chimera of tangible existence. What is this thing called "Brad"?
A simple pill can fully subvert it. A renegade cell in the bone
marrow can destroy it. "Brad" can't say: "NO YOU BAD STEM CELL!
STOP MAKING THAT MONOCLONAL ANTIBODY RIGHT NOW!" Instead I have
to rely on chemical coaxing, an internal fight to regain myself.
What a mysterious and fragile thing life is.
I read through that last paragraph, and I remember when I first started searching the web for multiple myeloma. There are a number of web sites with 'survivor stories', and I recall the wonderment I felt at how these terms were routinely employed in the texts: IgG, IgA, light-chain vs. heavy-chain, Bence-Jones proteins... and now this is knowledge that I also possess. This is knowledge that I never wanted to have in the intimate manner that I do. Now my life depends on it. My survival dances between an IgG of 2900 and 1600. And I know what that means.
Every so often it even gets to be fun. This morning walking over to campus, in the snow again, I felt uncommonly happy. I can't say why, just waves of good feeling started washing over me. Even the fact that I now walk very slowly when going anywhere seemed a liberating gift. I was mindful of the world, I was aware, I was a full participant/witness. It's later in the afternoon now, and I still feel the afterglow of the morning.
Another example happened this past weekend. My mom was out visiting (happy birthday again, mom!), and Saturday was just a magical day. We went to a photography exhibition of one of our friends, and later we had dinner at a delightful restaurant in Cranbury (Hannah and Masons). But the amazing thing was that it was the night of a total lunar eclipse. Partway through the dinner, we all went outside to watch the event -- great photos in the afternoon, great food in the evening, and then a spectacular sky-event. I felt like some sci-fi galactic tourist, skipping across the universe in search of wondrous things. They're all right here!
I'll flip this to a brief comment about music, and something I find continually puzzling. This has been a choice-making month of hell. There have been a lot of music jury decisions, graduate applications to our composition program to consider, our on-going faculty search; basically it seems that every time I turn on some music it is to "evaluate" it for acceptance or rejection. Of course this is my job, but in our various meetings and discussions I find it dismaying how quickly we act to limit our categories of experience: this is not music, this is not composition, this is trivial, this shows no intellectual component, this is not... We seem so intent on reinscribing our own personal aesthetics that it denies us that 'open world' feeling that operated so powerfully on me this morning. Why are we so desperate to shut ourselves down?
I have a lot more to say about this, but not now. I've been pretty flaky these past few days, and not all of the 'cancer' adventure has been bad. Like I wrote earlier in this blog, I think there are some aspects I want to retain when I return to "normal". I don't recommend the path of chemotherapy for multiple myeloma as a way to achieve enlightenment, however. Brown rice and meditation seem little easier to take.
I don't know if it is a build-up of the drugs, or perhaps I'm fighting off the congestion/cough that afflicted my son Daniel earlier in the week, but something has turned everything completely jangly. It hasn't been the best week. Don't get me wrong, I'm still "doing ok", but "ok" is lately filtered through a shaking haze, reminding me that pharmaceuticals are operating.
What are we that the fabric of our existence can be so radically altered by molecular physics? Where is the transcendence? Where is the pure spirit? Where is the mind/body demarcation inscribed? I want to pass that line and float again, but for now I'm clinging to a quaking consciousness that shivers and trembles all the time.
I have to move slowly now. I have to think very hard about every action I take. It makes me think about the future, and realize that yes, life has fundamentally changed for me. There are things that I know I can longer do. There are adventures that are literally beyond my material capabilities now. There were vague plans of climbing mountains, swimming oceans, ever-challenging feats and exploits.
But you know what? I think this would have been true regardless. We're all getting older. Vague plans are vague for a reason. I guess it's the actual knowing that hits me. I'll get through this. The drugs are working.
But as I read the article, a few cracks in the reality-recorder/instantiator image began to form. The first comes from my memories of flying into Newark when it is clear enough to see the ground, and most compellingly when it is night and all the lights are on.
There are so many people!
Looking down at the mass of humanity, trying unsuccessfully to imagine the lives and stories of each individual, it totally overwhelms my mind. How can there be all these "others", with thoughts, hopes, fears, ambitions, all like but different than my own? A teeming mass of sentience, and I'm just a very tiny part of it. Are we all making it up as we go along? Could someone be sure we get those happy endings?
I thought of this flying-into-Newark scene because Lanza addresses it briefly in his article, side-stepping into some notion of a potential 'universal consciousness'. I'm not sure I buy it, but he does point out that we may be so cognitively unequipped to figure all this out that just about anything is possible. Mass human stupidity, that I can believe...
The other problem I'm having has to do with memory, and the fundamental role that our memories play in the construction of ourselves and the world. I'm not sure how it factors into the observe-and-create model. I've been second-guessing a lot of my recent attempts at memory-capturing since last Saturday night because a really uncanny thing happened. It's another dream story, but this time the action that disturbed me happened after the dream. Jill and I have a Waterford crystal candy dish that was given to us as a wedding present (almost 25 years ago!). My dream was that this dish landed in the middle of Columbia's campus, and rapidly expanded to encompass about half of the college grounds. Many people were trapped inside this crystalline entity. They weren't killed or struggling, just stopped, in that 'suspended animation' you always read about in sci-fi stories. I knew quite a few of them.
The strangeness occurred when I awoke. It didn't seem like a dream, instead it was like a real memory. I'm not kidding. I began to make plans for the coming week predicated on the crystal's existence. I literally wasn't able to discern the difference between Waterford-Columbia and actual-Columbia. Finally, my logic took hold and I thought "wait a minute, this isn't really possible", but I had to convince myself that a giant, expanding candy dish didn't take over a part of the Upper West Side of Manhattan.
It sounds pretty funny now, and in fact it is pretty funny to tell, but I can honestly say that I've never had an experience like this. It was as if my memory had been totally replaced by something alien, and I couldn't tell the difference.
What does that say about a manufactured reality? What role do our individual memories play in shaping a malleable world? This is doubtless a big part of my motivation to 'freeze' precious moments in time, to nail them fast so I can say: "yeah, that was real, that was life, that was me." But along with the 'freeze' is the 'flow', and I need to accept both as being primary components of the substrate of my world. That fundamental randomness of life. Paradox, maybe, but we are all so astoundingly improbable that paradox is most likely the natural state of things. I don't know where the flow will lead. What is the probability that I would get MM? How did I get to be so lucky?
Or it could be that I'm fighting off a cold, got a cough, whatever, but this hasn't really been much fun. I'm resting a lot, but still... vibrating. Good thing it's St. Patrick's Day (happy one, 2007!), because I've been listening to Irish folk music all day. Great music for a quivering world.
When I started this blog, I figured -- after the initial 'last will and testament' mindset -- that I would write down all sorts of profound things. My text would be filled with insightful and cogent observations on life and death.
Now all I can do is vibrate, and hope it stops soon. This is all a part of it. Aaaaaaaaaaaaaaah.
Yesterday I was riding in a taxi over to the Weill-Cornell Hospital for my monthly "infusion" chemotherapy. As I watched the people and buildings slide by the window, I thought: "This is your life now. You will be going to hospitals, you will be dealing with medical and health issues from now on." Seems obvious, but it was a stark realization for me. I guess it happened because the past week reminded me that I do, in fact, have a pretty serious disease. I can't predict how it will unfold, and I will need to accommodate to shifting circumstances.
This realization was tempered later that morning, however. After being hooked up to the IV bisphosphonate, I turned on my iPod and listened to some recent live recordings I had made with Terry Pender and Gregory Taylor. I had closed my eyes and was relaxing into the music, when this part started to play. I don't know if it was a trick of photons or perception, but somehow -- with my eyes closed -- everything seemed lighter, slightly brighter. I thought back to my taxi ride, but this time it was: "Yes, this is my life now. But I'm still making music. I'm still here."
I think one of the biggest challenges that I will face is not to let the physicalness of my situation get me down too much. It's that old mind/body problem again.
I can tell primarily through a difference in my focus on what I have to do. When I am between certain of the cycles, I experience a lethargy of sorts, a fuzziness that makes it difficult for me to imagine what I need to do next. On the other hand, when I am under the manic siege of the chemotherapy, my focus problem is to weed out what to do from the thousands of possibilities my mind incessantly conjures.
To help me make sense of the world, I resort to detailed "TO-DO" lists. What's funny is that I used to write these lists before all this cancer fun, and then I would promptly ignore them. Weeks or months later I would open my "TO-DO" file, and dutifully delete all of the items I didn't do but were beyond doing, or the few that I managed to accomplish. Hard work, all that deleting. Nowadays I consult the list frequently, like a text talisman that gives my life meaning. Fuzziness or not, I "X" off items I have done. It makes me feel good. I do things! I am living!
So do the drugs I am taking make me a better person? I hope not, because that leads to a Barry-Bonds-like situation that doesn't seem right. Then who am I? What makes me me? My personal belief in a rather deterministic biology suggests that yes, chemicals do control what we do, how we feel, how we perceive, how we remember. Steven Johnson in his book Mind Wide Open makes a compelling case for this idea, although he swerves close to a flaky new-ageyness when he speculates that we can exert deliberate control over our happy hormones. Jeez, I wish I could do this. Concentrate now: "myeloma... cells... go... away!".
What's missing from a hard-core biological determinism is the rich interaction with our environment; our past, our awareness, our memories. Yes these are all mediated through our brain and body molecules, they are filtered by our chemistry. But it all comprises a tangled system that does create each of our unique senses of 'me'. My suspicion is that rising out of that tangle is the form of our core being, unlike any other because our personal histories and circumstances are so completely exclusive. A good friend of mine told me about watching his father's descent into Alzheimers. Even at the near-dissolution of his dad's personality, my friend said he could still detect that individual core; the essence of his father buried beneath the layers of decayed brain tissue. I want that to be true.
Of course I can use an analogy with music. I can demonstrate how the algorithms I use make my pieces work. I can use software to show the individual fluctuations of air pressure that will strike your eardrum. Various theories of perception and cognition purport to explain how our brains "make sense" of these sound-pressure waves, some now being verified by initial brain-imaging studies. Suppose we gain a deep understanding of our musical brain function. Will this explain why I feel the way I do when listening? Can this understanding reduce my musical experience to "oh... yeah. that's it."? Will it give me control of my qualia?
No, because these totalizing concepts have no idea of my individual and idiosyncratic life. Now that life is being modulated by new life-conditions, and it will become a part of who I am -- drug-tempered or not. When I hear blanket statements about what makes a "good" music, about what Real Composition is all about, I know they are wrong, because they aren't me. And that's a blanket statement.
Wow, semi-simplistic ramblings about selfhood and music. Drug-tempered indeed. I'd better stop now.
The rest of the day was like water. The sun was out, too warm for this time of year but springtime was suddenly more than just a vague idea. Flowers, birds, breeze, all those conventional markers of seasonal change, they were all in fluid play. The world wasn't liquid, it was more that I was. This way, that way, flowing towards a future. Conditions change, shift, transform, it all just happens. I am dissolved.
This is a trip I really want to make. These are the decisions that form your life. I miss my daughter! She's all grown up!
And to see Lian! What a great feeling! I have more to say about Lian and Daniel later, and perspectives on their futures engendered on this particular travel adventure. I'll also be putting up some pictures soon, but they really need to be thinned. I adopted the "hey, it's only bits" digital-camera approach and shot something like 300+ pictures. Time to edit. I also don't want to do the travelogue thing: Today we saw this! Yesterday we saw that! I suspect it would be fairly boring to most everybody outside my immediate family, and about half of them were on the trip with me. Others can write what they travel much better than I can.
The presence of memory really struck me on this trip. The purpose it serves, the traces of past thinking. This is something almost novel to those of us born and raised in America, where our collective cultural and social memory is a tiny fraction of what confronts us at every turn in a country like France. We drove through large tracts of agriculture, it almost seemed like Iowa, except that every farm had at least one iconic structure -- a crumbling windmill, a stone ruin of a farm outbuilding -- that was literally centuries old. A constant visual scrolling of remembrance. This is who we were. This is where we came from. This forms our individual and collective recollection.
In one of the medieval chateaus we visited, I had an odd reaction to this overwhelming rush of human memory. Watching all of the people rambling through the king's bedroom, it impressed me that this scene was probably completely unimaginable to the ancient nobility who had created this castle. Their ability to imagine was totally constrained by the contingencies of the memories and contemporaneous experience of their own time. Commoners, merchants and peasants wandering through their bedchambers? Yikes!
What are we missing today in our own thinking because of our cognitive historical strictures? Does our collective recall of past wars and and strife make conflict inevitable? Does our sense of "tradition" in music and art lead us to ignore true creative innovation? Is it utterly impossible for us to break the bonds of our social memory-banks and imagine entire new ways of being human? I was sitting in that ancient chateau, we are all sitting in comfortable chairs made of memory, and we can't stand up.
I also find myself constructing memories, probably based upon recombination of past memorable events in my life. Music does this to me, or things like the smell of wood smoke (why should it have such a strong 'home' resonance -- I didn't smell a lot of wood smoke while growing up...), or the shade of light through an uncommon cloud formation. If we can construct these things, maybe we can construct others. Music again. I think it does this.
The immanence I sometimes describe associated with the drugs I'm taking is also probably related to an interference with memory. In fact, this entry will most likely be really weird for me to read tomorrow or the next day. I'm still hewing to my 'lightly edited' approach to getting things written, and I can tell that this one is fairly scattered. It's hard for me to keep focused on what I want to say, the memories fracture and fragment. The world seems constantly new, everything exists in just the moment, that whole "be here now" nonsense made real by the fact that the immediate history is fuzzed. Jill refers to these times in my chemo cycle as me being "wifty" -- not a bad description at all. And it's not entirely unpleasant, usually. But I do have to keep those lists. DO THIS. DO THAT.
Maybe this is a larger description of America. We don't really have a history, and perhaps that allows us to engage potential discourses that aren't hemmed by seeing a real piece of centuries-old sociocultural baggage wherever we turn. The negative aspect is that our past can also give us a perspective that is often desperately needed. When this past becomes absolute, however, we can no longer think anew. Somehow we need to find a way to strike a balance between the absolute and the contingent. Lately we haven't done a very good job of this. The world pretty much sucks right now.
Yikes, what am I saying? I'd better go to sleep. Much more to say about the trip later. But my worst fears didn't happen, the travel was fine, and now I'm home.
Before leaving to visit Lian, I wondered if the possible stress of the flight and travel might shorten my life. What is a life without joy, though? Without making these choices? What is "living" if fear of death, or failure, or just plain fear destroys what makes it all worthwhile?
Boy is that a trite and cliched thing to say. But it's true.
And in this case, life didn't seem to shorten at all. Another positive appointment with Dr. Pearse and Faiza today. My stats are doing so well that they have reduced my steroid dose significantly starting next week.
I wonder how I will be.
I'll do the epistemological/ontological shuffle with this question, and change it to: What is life's measure? I'm fifty now, so you get to ask these silly questions.
The "what" last night was the Roosevelt Arts Project presentation that Wiska and I did at Borough Hall here in town. About once a month, RAP will sponsor an event put on by a Roosevelt resident. Wiska and I usually do something 'digital' (for lack of a better term) in the spring.
Wiska started the evening with a DVD she had created using pictures from a recent trip to a small island off the coast of Naples. I don't think Wiska knows how much I admire her work. The audio integrated with the video, all sounds from the island, she had woven into a magical memory-resonant audio tapestry. I played several of my "mm" pieces, including one I just finished the day before. Terry Pender, Gregory Taylor also did our laptop/mandolin improvisation thing for a couple of pieces.
That's just the description of the show, though. The inner "what" was the community, the gathering together of friends and neighbors. Although I claim to dislike public concerts (I even wrote an article awhile ago, Why I Hate Concerts), the fact of the matter is that I am reacting to the social role that music plays in context. For me, this is a foundational component of musical activity in our culture. It's a give, it's a take, it's a sharing of imagination; not an extra-human pursuit of some weird, idealized neo-Platonic modernist perfection. The musical society at Borough Hall last night was genuine, absolutely correct for the way I like to have music go. A concert I loved! A little ego involvement: everyone sang "Happy Birthday" at the end. Ha ha!
Afterwards people came back to our house for some cake and cheese. Jill and Daniel outdid themselves getting things all set. It was a fabulous evening. The what of measuring a life. Life has been good.
So today I planned to relax, to drift a little. I wrote this down, intending to end my text with it today:
Then our kitchen flooded, and the rain isn't stopping. Reality. Tomorrow I'll put some of the music from last night on-line.
My kids are getting all growed up! I shouldn't even refer to them as "kids" any more. Lian is an impressive young woman, and Daniel is now a -- yikes again! -- New Jersey teen. Of course, to me they will always be kids, or perhaps more properly 'kidillions' (I used to call them that when they were much younger). I can recall those 'kidillion' times with an intensity and clarity that shakes my world.
Life is change. We use our memories as shields against the torrent. And it is still raining outside.
I also played a new "mm" piece that I finished the day before the concert:
I make much of the social and cultural function of music, but a piece like mm-3 (drugs) plays another role. I don't do much to push my music out into the world, partly because I'm a lazy bum, and partly because the transaction just feels odd to me: "Listen to my music! Please! It's mine! Tell me it's good! Listen! Aren't I Good Composer!" It's embarrassing.
Why then do I continue to feel the compulsion to make sounds? I think a part of it is that I use my music personally as an emotional journal, a memory-aid of how I felt. I go back and listen to my older work, and I can again be the person named "Brad Garton" who was living back then. Pieces like Three Hopeless Songs (during my tenure review) and lian-summer-echoes (Lian leaves for college) take me almost physically back to the times of those lived experiences. I use them to help me make sense of where I've been and how I was. I can remember. Where am I going? Who am I now? These pieces help me. They're like therapy. I don't know what they do for anyone else.
This past weekend, Daniel and I went to the bookstore to spend some of our birthday money. On the way there, Daniel was telling me of his desire to learn Latin. He is fascinated by languages. I had the same internal reaction while listening to him that I did watching Lian triangulate in fluent French during our visit: My children inhabit a very different world than I do, than I did. What they can do, the opportunities they are creating, what they can achieve, it takes my breath away.
That was the root of my sadness. I want to see how their lives evolve. I want to be there as time progresses. Totally selfish, yes, but I am unwilling to sacrifice a single minute. I want to see how it all turns out!
Of course I won't be able to do this, none of us will. It's that vexing linear nature of reality that we all have to confront. But to have your line of personal existence snipped by a molecular shift in a handful of stem cells, or by a bomb exploding in a marketplace, or by shiny bullets from a deranged student's guns, or a car blindly merging into your lane; that's the stuff of tragedy. Sadness. I want my future back.
How to turn that guilt into action? Here I am in Roosevelt, at Columbia, through a lucky roll of the life-dice, now how do I reconcile my providence with the world as it presently is? Our neighbor Henry John-Alder was at our dinner table. Henry lives down the street from us, and his son Wes is about the same age as Lian. We've known Henry, Wes and Henry's wife Kate for almost as long as we've lived in Roosevelt. Henry is also on the faculty of Cook College and was instrumental in nominating Jill for the award. Good friends, indeed!
Henry is contemplating taking on more administrative duties at Rutgers. He was lamenting how he had to be much more careful about what he said to different people in his daily conversations on campus. Henry tends to be happily outspoken, and I'm sure this newly-placed verbal filter isn't much to his liking. I told him: "One of the fun things about my myeloma diagnosis is that I don't really care what I say to people now. What have I got to lose?" Then we laughed, we exchanged wry smiles, went back to eating our awards-dinner chicken.
I totally lied, though. I do care. I care about things I can't really do too much about, and I also care about local things where I can exercise some degree of influence. I like to fool myself into believing that the "think globally/act locally" maxim might actually have some currency. If anything, my "I don't care" attitude does result in a newly-acquired freedom to express what I'm thinking. I doubt I would have started this blog if I wasn't suddenly endowed with a heavy dose of the "what have I got to lose?" mindset.
Shortly after my diagnosis, there was a period where I went through an extensive set of mental rearrangements. This was when I thought I had a fearfully short time left to live (two years max). I was becoming jealous of old people. I decided to start this blog to pass along my Grand Accumulated Wisdom to my kids. So far, fortunately, things aren't quite turning out that way. There were moments during this period, however, where I gained a focus that was emotionally bracing, and sometimes terrible in its clarity. I felt I could understand how suicide bombers could carry out their monstrous, malignant actions. "What have I got to lose?" I realized that I too could become an utterly amoral person in the short time I thought I had remaining. I could kill, I could cheat, I could steal, I could lie, I could rape. Nothing for me to lose, right?
Except my soul. For me, any concept of soul arises from our culture, the social networks that define the person we are. I think there is great danger in aligning concepts like "soul", "value" and "morality" in a nebulous, humanly-defined and interpreted external agency. Too much can go wrong. I talk more about this below. To be sure, the suicide bombers are a contemporary object-lesson in what can go horribly awry with an extra-human appeal to morality. In a culture giving rise to self/mass murderers, these individuals have to believe that what they do is somehow "good", otherwise they manifest an evil that is totally beyond comprehension. Realizing this, I knew that the path of debauchery just wasn't going to happen for me. Oh darn. Instead, my clarity of focus mutated into a determined desire to try to do what I could -- think globally/act locally -- to make the world better, to shift society from our current self-destructive global autism to a more diverse and tolerant ethos that may lead us away from future Iraqs and Somalias.
How do I plan to do this? I need to tell you a story. This happened to me almost three decades ago, when I was in my early twenties. I've only told this story to one other person. I had gone to Chicago to visit some friends, and we were sitting on a wall on the north side of the city overlooking Lake Michigan. It was a bright and not-too-awfully-hot summer day, and the waves on the lake stretched to the cloudless blue horizon. They weren't moving in any direction, just undulating up and down, holding time, holding place. The band I was playing with had achieved a certain degree of regional notoriety, our recording studio business was beginning to flourish, and visions of ultimate rock-stardom were dancing in my head. I sat in silence for a time, watching the waves move, nowhere. Then I heard this internal voice -- if I were Brad d'Arc I would probably call it God -- and it said: "You will never be GREAT." Completely matter-of-fact, no blaring of trumpets, just a simple statement of truth. I thought about this for a bit, and then it occurred to me. I would spend the rest of my life dismantling GREATness.
Now, don't misread me too badly. We need heroes, we need role models, and we need to aim for something better than what we are. All too often in today's world, though, it is the idea of GREATness that has supplanted what has been held as honored achievement in the myths and legends that populate our history. Even worse, the striving for GREATness in and of itself has repeatedly functioned as an excuse for all manner of inhumane activities. Generally this has also been accompanied by some sort of extra-social metric for judging GREAT actions; Plato's perfection, God, Kantian idealism. The results: crusades, inquisitions, holocausts, genocides. Really GREAT, huh?
This is a conceptual area where I think I can make a small difference in the world. A lot of our recent models of greatness (I'm going to drop the semi-annoying capitalization of GREAT now), especially since the Romantic era, are informed by roles created by the great white males of music. Think of the total-jerk rock star, the egomaniacal conductor, the impassioned and obnoxious composer. We forgive the rock star for living outside society's rule because he defines our culture. We forgive the conductor because he is translating the voice of a musical god. We forgive the annoying composer because, well, maybe he is a god. He often pretends to be.
The common theme in each of these characters is the reliance upon an 'objective' standard of judgment that lies external to our extant social matrix. How else do we forgive them for their insufferable behavior? This is wrong. Unfortunately, once accountability to our fellow earth-inhabitants is lost, it opens the door to all sorts of brutal and callous behavior. We are no longer answerable to each other because we are pursuing a greater good.
I would rather see the pursuit of an objective, neo-Platonic (and literally inhuman) perfection replaced by a notion of greatness that is centered upon the broadening of human capabilities within our culture. Instead of chasing after an arbitrary ideal, why not make the ideal a radical diversification of our experience? Extend the conversation! Expand our thinking! Amplify our culture! I see this is a truly heroic kind of virtuosity, one that stands in contradistinction to our current model of the solitary, asocial genius questing untrammeled towards a narrowly-defined supreme goal.
Like I said, I see this clash of greatness-definitions being played out in my own domain, music. I also believe that the creative disciplines are the source of many of our social and cultural prototypes, so this is where I feel the compulsion to make an ethical difference. We are having this debate right now in the Music Department at Columbia. Several of our recent job-searches, post-doctoral appointments, and graduate student admissions meetings have made it apparent to all of us that we are working with very different visions of value. Do we want a Department hewing to a fixed notion of musical perfection, making our judgments based upon this idealized standard? Or do we seek to widen our range of musical discourse? Expand our creative possibilities? We've decided to step back and attempt to resolve these issues, which I think is a wise course of action.
It's pretty obvious from my characterization of the alternatives which side I favor. To be honest, I'm sure that I'm also being driven to demolish our modern construction of greatness by a few of my own sour grapes. The problem with positing a fixed, external ideal is that it automatically assembles a musical hierarchy. I generally find my own work somewhere south of Real Serious Art. Darn! I listen to my music, and at least I like it (as noted earlier, this is a good thing). If I had to list my own 'objective' and timeless criteria for good music, it would obviously be very different from the apparently agreed-upon valuation of many of my peers. Darn again!
The snide comments do get a bit thick at times. And I do get sad when I realize that only fives or tens of people have actually taken time to wade through My Music Book. Heck, I still like listening to it, and it was hard to do! At least I haven't encountered any other applications quite like it yet. This is either really good or really bad news. My self-image oscillates.
Realistically, though, this state of affairs doesn't generally bother me all that much, especially since I've got that perspective-on-life now. As I noted earlier in this blog entry, I have a happy and fortunate life. I also do think that there have been times in the past where a socially external genius striving towards a distant objective was important for cultural evolution. My "big three" composers, Bach, Mozart, Beethoven, certainly fit this model.
However, the world has changed dramatically since those more confined and constrained times, and the transcendent-man model of fabricated greatness is doing far more harm now than good. It is time to imagine different ways of being, a method of achievement predicated upon active social engagement instead of a literally inhuman agency of invariant perfection. We are all different. We need to find ways to embrace these differences. The alternative imposition of this external truth or that external truth will end badly. I want to do what I can to prevent that from happening.
My family on a train, driving around Italy, the lady and her husband, going to the restaurant, Terry/Gregory, the man showing me the basement, imagining the summer sun, the beautiful sunset fields even the truck at the restaurant road I can fit into my "world view", weird, looked out the window, flew through an opening, the golden-yellow skyI have no idea what it all means now. I do recall "the beautiful sunset fields". I looked across what essentially was a wheat field, but each tuft was a different color, although muted in the waning afternoon light. And "imagining the summer sun" -- I could feel it on my skin, smell the summertime. The lady and her husband somehow were Life and Death, but they kept changing their respective roles.
So I guess I'm still thinking about, and dreaming about, life and death.
Today I drifted. Chemo-brain. The sky was so blue again, the wind strong, but very warm. I walked by our elementary school on my way to the post office just as it was being let out. Because it was such a beautiful day, a number of people had walked over to meet their kids. I recalled being a member of that group, Lian/Daniel rushing out to come back home. We were so happy! Now it seems I make them sad, often inadvertently. Lian and Daniel are older now, and they need to make their own choices. Those choices will determine how their lives develop.
About a year ago, I had proposed to the Roosevelt Arts Project board to set up an "Art Walk" in the wooded area that weaves through Roosevelt. This was to be part of the 20th Anniversary of RAP (see the bottom of the pdf page). I managed to rope several of our graduate students into setting up some of their installation work among the flora and fauna of Roosevelt, and I had a great deal of help from young (and talented!) Roosevelt artist Victoria Estok. The finished result could not have gone better. I think I told one of my friends coming out of the walk expressing his appreciation of the showings: "it was more good than good!"
Here are some pictures I snapped at the end of the day to give some idea of what the "Art Walk" was like:
The aspect of the show I liked the most, however, was the range of people who came through. Young, old, in-between -- they all walked the walk and really focused on what they were seeing and hearing. I think my students were a little nonplussed at the reactions they received from the spectators. I overheard conversations ranging from the typical "how did you do that?" to "it reminded me of a concentrated reduction of the cosmos." But the level of personal engagement on the part of the viewers/hearers was genuinely gratifying, much better than the typical too-cool-to-comment New York attitude that attends many events in the City these days. If the goal of our music is to reach people, somehow, then the "Art Walk" was an unqualified success.
I talk until I'm blue in my seminars at Columbia about alternative ways of doing, presenting and thinking about music and art. It was really nice to have a concrete demonstration and affirmation of exactly what I mean in the "Art Walk". One of my students said to me: "You know, I want to do this for the rest of my life."
Afterwards all went to Masti's Grill for a tasty Indian dinner. Many
parties later going on in Roosevelt, but I went home to unwind... a perfect
Saturday afternoon. How I measure my life.
I have discovered that withdrawing from the chemo almost makes me feel worse than taking it. Yeah. My physiology has changed. Now I can just begin to appreciate the pain of breaking a drug addiction. Don't do heroin! Bad idea! This was not a pleasant week. Today I restarted my Revlimid, and I feel alternately jumpy and tired, but not as totally washed-out as a few days ago.
One of the features of the week that made it tolerable was the burst of springtime. New Jersey truly is the Garden State in May. The flowering cherry trees, the dogwoods, the azaleas, tulips, magnolias, lilacs; they all decided to bloom at once. The weather was ideal. I could look outside and the nearly psychedelic range of colors was a fortunate distraction.
Tonight at dinner I watched through the windows onto our back yard as twilight fell. The dogwood flowers adopted their luminous aspect that makes them appear to glow. A slight breeze was blowing, and wild cherry blossoms were winding slowly to the ground. The were like snow, only they were flower petals. I hope this is a harbinger of things to come.
My memories kick in. Suddenly I'm in fifth grade again, opening my Binney and Smith Crayola Crayon box. One of my most favorite crayons was "Forest Green". It was darker than the other greens, and the intersection of the name of the crayon with that darkness gave it an aura of mystery that captivated my young imagination. Also I just liked the way it looked. My attraction rapidly wore the poor crayon down to a blunted dullness, Despite the 'built-in sharpener' on the box, it would never again have the collared point of a new and unused crayon. Yeah, there is one of those life-metaphors in that last sentence.
Reliving this young, green-tinged memory I suddenly realized that I had forgotten momentarily that I had cancer. The ever-present whispering of impending doom that pervades my daily consciousness was temporarily stilled, cast aside. Perhaps this is in truth one of the primary functions of memory. It allows us to face contemporary circumstances that would otherwise be completely debilitating. We have lived before, we have a past to verify this knowledge. Stockpile the good memories, take them as mental photographs to be recalled, so that we can better face the potentially crippling conditions that life may serve.
There are still moments when I can't quite believe what has happened to me. I think about when I woke up one morning in late October last year with my shoulder feeling slightly pained. What if it had simply gone away, or been a slight sprain? Why didn't it? Why wasn't it? How would my life be now; what would I be doing?
I have noticed that there are more and more times where the "cancer... cancer..." humming in my head does go silent. Hopefully I am accommodating to my life as it is now. Hopefully this is a good sign. And hopefully the cancer-awareness will continue to recede, as life goes on.
At least this isn't as bad as the first few weeks after I had received the definitive diagnosis. One of the good/bad characteristics of a life in music is that I have sounds in my mind nearly all the time, like a running soundtrack with no iPod attached. There was a period when I had this ridiculous 1980's song by a one-hit-wonder band (The Knack) titled My Sharona infecting my brain, with the obvious verbal substitution of "myeloma" for the title and repeated chorus. Oh darn, now it's in my head again! aaaaugh!
The other I did contact via e-mail. The first few exchanges were innocuous enough. Then in the course of describing our current life conditions, kids/work/etc., I told him about my myeloma. His response was "well, well!", for it turns out that he has a similar cancer-like situation. Parallel lives. After a few more e-mails, it became apparent that we had both concluded that in the face of our respective illnesses we had decided to try to lead the best lives we could. We both realized that it is impossible to predict the future, and having a palpable reminder of this fact isn't automatically a bad thing.
I wondered if he had also gone to the additional conclusion to strive, somehow, to make the world better with our remaining time. I suspect that he had, and I also suspect that his method would be similar to the "think globally/act locally" approach I described earlier in this blog. He's the sort of person who would think this way. He's also the sort of person who could actually pull it off. Truthfully, this is about the best that we as individuals can do.
It made me aware that my own "global/local" actions and intensity have fallen off a little. This is also part of the habituating to cancer in myself that I have noticed. The all-encompassing moments of immanence and stark crystalline awareness/fear that routinely visited me do not happen as often as they once did. I am measuredly happy about this, but I don't want to lose the focus and passion that accompanied them.
This diminution is obvious even here in this blog. I've observed that the "inter-blog-post" interval is lengthening a little bit. Probably this is inevitable, as I don't want to be too repetitive in what I say (but I'm probably failing!). Some of this is due to the end-of-term crunch (Columbia's commencement was this past Wednesday), plus my mom was out for a visit this weekend (wonderful as always). I'm also working to finish up a paper that has proven difficult to write, but it's nearly finished. Hopefully the completion of all these will give me the time I desire to reinvigorate my commitment to try making the world better. Actually, the paper is part of it. It's been difficult to write because I am writing about things that matter to me now. It's not always easy going, as attempting to articulate strong personal beliefs can be challenging. I feel like I need to get it finished before I can work unencumbered on other projects. Silly me.
However, despite the obligations of daily life, sometimes the precariousness of my position still hits me hard, the powerful motivation I felt when first coming to terms with my diagnosis. I had an appointment with Dr. Pearse on Wednesday. At some point in almost every cab ride to Weill-Cornell, my pulse starts to race as I suddenly realize that the knowledge I gain that day may not be good. This has been true of annual health physicals in the past, but I pretty much dismissed any smoldering fears figuring I would be fine. I was immortal, after all. Now my figuring is exactly opposite, as I cling to hope of an odds-beating mortality.
The knowledge gained in this past week's visit was still positive, though. I really like it when Dr. Pearse looks at my recent charts and says "hmmmm, the IgG levels are coming down even faster than I thought they would..." Yes, this is good knowledge. The only disturbing detail this time was a patient in the room next to mine. I didn't see them, and perhaps they were elderly and suffering from an Alzheimer's-type ailment, but they were obviously in a great deal of pain. I wondered: was that my future?
The future, the future. We can't see it. I don't think we should see it. What if the answer to my wondering came to me in a burst of precognition -- "yes, Brad, you are destined for nearly unimaginable suffering." I wouldn't believe it. My oft-repeated mantra, don't underestimate the fundamental randomness of life, makes all such foreknowledge suspect. During my mom's visit, I thought about the tangled life-trajectory that led her to where she is now, and my dad's also-entangled path, and my grandparents, the whole chain of contingency and circumstance that resulted in my mom sitting next to me sipping "Lemon Lift" tea.
Now for the trite-but-true obvious observation, it is the doing of these journeys that matters, and not the subsequent teleological tagging. And the global/local spin revolves around how we walk these journeys, the methods we employ to achieve our ends, the forms we adopt to live our lives. These will be our legacy, not necessarily the specific goals we reach.
As a family, we enjoy hiking on our vacations. We climb (non-technical!) mountains when we can, immersing ourselves in a glorious natural environment. Now, suppose while on vacation we see a mountain, but we have the option of instead watching an IMAX recording of the top; the breathtaking views, the sound of the wind, the imagined feel of the crisp air.
What would we miss? What would be lacking? Like, everything. I hope I
get to climb a few more mountains with Jill and the kids.
Western philosophers have long debated "the mind/body problem". Yes, I have that. My body often feels alternately jangly and numb. I'm just along for the ride.
But I now also have a "mind/mind problem", or maybe a "mind/mind/mind/... problem". There is a part of my brain that is able to engage in conversation with other people, play the language-games, to get me around, to do the things that we do as functioning human beings. Sometimes I'm amazed at how well I seem to pull it off.
There is another "me", however, that works on a much longer time-frame. My consciousness here moves very slowly; observing, integrating, twice-removed. It's difficult to describe, because this part of my awareness seems to exist almost outside time. I can hear myself talking, I can see myself interacting with friends and family, but it's like watching a strangely internal movie of myself being Brad-like. It leads to all kinds of deja-vu-like feelings. It endows the phenomenal world with an alternative, timeless, possibly eternal dimension. It's not really bad, just very odd. Maybe this is what happens when death take us.
Then there are even more "me's" clamoring for attention. It's like Minsky's old 'society of mind' theory of consciousness made real. I can resolve the myriad members of the Brad-consciousness-club into individual entities, but they flicker quickly in and out of existence. What a time! What a life!
A lot of my dreams have sounds or even a musical soundtrack of sorts, and this one certainly did. Running through the entire thing was the old Donovan song Happiness Runs (excerpt) Really sappy, but really happy! Lian is home now, and indeed I am.
Driving around, noting the abnormal humid-pollen mists that have visited our local environment this week. They turn stands of trees across farm fields into otherworldly emerald islands floating on a calm, verdant sea of newly-emerged crops. I've seen this before, in Indiana, at dusk. I've felt the deep mystery revealed. It is something, it is a stasis in an unwavering march of past-present-future. Time stops. Time curves. Time circles.
For some reason, the interpenetration of memories has really intensified this week. I find myself living in three or four different periods of my life simultaneously, as one memory fans out and activates a parallel set of related episodes. It's like being in the afterlife of Daniel's religion, but here and now, with the channel-changer flipping indiscriminately through all that I have lived. I am both integrated and fragmented at the same time. The eccentric local shifts in weather have conspired to assist in this personal deconstruction of time. The air gets cool, and the position of the sun in the sky makes it feel like it should be October, but the leaves and flowers are all newly-May. The haze and an abrupt change to 90-degree days points to late July, but there are no July/August insect sounds. It is all so weird.
These erratic jumps have also visited my body. I'm doing ok, and then suddenly I feel really awful (in a number of different ways). Then I'm strangely 'good' and active once more, but it transforms into a nausea, or an overwhelming lethargy, or a tingling numbness that travels up and down my arms and legs. Then I'm fine again! I can't figure this out -- I thought I was pretty much on top of the effects to expect from my drugs, but this is bewildering. Nothing has really been altered i my chemotherapy in the past week.
It's not just physical good/bad symptoms, either. I've been subject to a host of indiscriminately intensified sensations. Out of nowhere, I will experience the smell of springtime, or an amplified vision of twilight, or a sound will trigger a context, magnified in consciousness to become my primary reality. These aren't unpleasant. To the contrary, I enjoy the redolence of spring again (my olfactory sense had been declining through the years). And I'm always a sucker for a recalled musical context.
I guess I'm saying that this wasn't such a good physical week. In trying to trace the causes, I'm probably forgetting about the real changes that did occur; my bisphosphonate infusion last week, the rearrangement of my drug schedule in the afternmath of the rash-fun, or even the sudden swings in ambient temperature. However, you also take the bad with the good. The sensations and the memories have been an entertaining ride. Lian and Daniel have both been home the whole week, and that is the most excellent good. As I grow older, I understand my parents more and more. The jealousy of family time, yeah, it makes a lot of sense now.
Kate/Henry/Wes are among our closest friends. Henry is a biology professor at Rutgers, so we trade academic war-stories. We even ran for seats on the Roosevelt Borough Council together about fifteen years ago. Our opposition referred to the both of us as the "Professors of Doom". I've always liked that description. Fortunately we lost the election.
I realized as we were talking together that our friendship has essentially spanned the lifetimes of both Lian and Wes. I recall meeting Henry on the Roosevelt School playground two decades ago. Wes was probably almost two years old, and Lian was barely one. In contrast to the feeling of time collapsing I described in my previous blog-entry here, the recollections we shared produced a telescoping of time, a segmentation into individual moments to be remembered and relished. We project these into the future for Wes, for Lian, for all of us, and we preserve our hope.
These memories, they help us live, they allow us to maintain our vital hopes and dreams. When I imagine time 'connecting' or curving inward in a joined continuum, I don't mean the fusing of discrete memories that would destroy their individual integrity. Instead I imagine an all-access array of sorts, a direct tap into who we are.
I think that's part of what is now driving me to continue this blog-business. I want to make every moment matter, and writing them down seems to help. Of course, we're way too obsessed with this idea of mattering, and too often I think our sense of what "matters" is totally misguided. The stories we told of Wes and Lian, at the time they occurred, I doubt we would flag them as Big Events. But in reconstructing ourselves, they mattered. There are in fact moments of unbounded joy to be had, but when you try to clutch them, they vanish. Simplistic Zen, eh?
I don't know where I'm going with this, my mind is pretty "wifty" (as Jill and Daniel say) today from drug-rearranging. Yesterday a very close friend told me very bad news about his father. What to say? What to think? How do we cope with what we get served? The memories, the moments -- they matter. They are who we are. They are life. Re-live them in joy and in peace. It is the best we can do.
What will happen? I'm not kidding about a haze of numbness. Right now I can't feel my toes, but I can see them. Are they a part of me? Toes, hands, mind, soul, fragments, coherence. Wow, I'm a postmodern guy. Is this my new "normal", for now?
One of the qualities I notice about Levin's writing is his focus on the future, often an extension of his current, frequently harrowing, situation. I also recognize his feelings of "otherness" due to the chemo-brain displacement. He even talks about existence being "hyper-real", a perceptual phenomenon I now know well. Here's one of his paragraphs:
In his other entries, however, his future-orientation contrasts with my dredging of memories, and the connections I seek to forge between past and present. Perhaps this is a function of our age-difference. Levin just graduated from high school; his future awaits. I have a history. I suspect it is also because part of what I view as my stock-in-trade as a composer is to mine memories by attaching them to sound. I'll go further and say that my composing also attempts to manufacture virtual memories, recollections that don't really exist until instantiated through music. For me, this is an extremely powerful property of music, one that cannot be objectively theorized or parameterized. This may explain my allergy to totalizing theories of "how music works". Music such a personal, an idiosyncratic, and hence intimately emotional thing.
These memories can't be forced. When they come, unbidden, they can be completely overwhelming, though. The past several days served as memory-demo weekend in this regard. I'm in the midpoint of my 21-day Revlimid cycle, with the periodic steroid fun, so my brain is definitely still in the drug frying-pan. Hyper-real, yeah. Lian came home Friday night, which always unleashes a host of past/present intersections. On Saturday, we attended the Roosevelt Public School's 6th-grade graduation ceremony. This is a fairly amazing event, and it always reinforces my sense of how special our little town can be. Several hundred people attend this event every year, and each student in the 6th grade class gives a short speech in front of the entire gathering. Roosevelt only has about 350 households, and our elementary school classes average about 12 students in size. A substantial portion of the community comes just to show support for our young residents.
Later that evening we went down the street to celebrate our friend Sharlene's 50th birthday, again surrounded by friends and neighbors we have now known for years. Sunday was also Father's Day, with a large segment of the US marketing apparatus devoted to goosing those gauzy recollections. So Lian, graduation, Father's Day, mid-century birthday, all these should have pumped the ole memory machine in a big way. Of course they provided occasion for reflection, shared memories with friends and family, but nothing like the moments of transcendent immanence that I have been living frequently since my cancer diagnosis.
Then on Sunday morning I was out in our back yard. We have a wild oregano plant, and I crushed one of the leaves to inhale the spicy fragrance. Smell is probably an even more powerful memory-inducer than music, but I can't compose aromas. In this instance, the scent of the plant didn't flood me with memories, but I think it set me up for what happened next. I used to wander around the yard with Lian and Daniel when they were babies, holding them up to different flowers and saying "smell the aroma!" in a really hokey Jamaican accent. This memory sifted back into my consciousness.
Then I saw the tiger swallowtail butterfly. "Transcendence", "immanence", "ethereal", "spiritual", "mystical"; all these words I can find trolling through the thesaurus or dictionary, none come close to capturing the collapse/connection/out-of-time apprehension of life that the butterfly alighting on our honeysuckle vine provoked.
When Lian was in the first or second grade, we happened to
find an unusual caterpillar preparing to cocoon in the fall.
We put it into a shoebox with some leaves and other imagined
caterpillar comforts, and placed the box on a shelf in Lian's
room where we promptly forgot about it. Months later,
springtime, I awoke to Lian shouting with excitement about
"something alive in the box!" We cautiously opened it up,
and a glorious tiger swallowtail butterfly was flapping
The magical thrill on her face! The sheer joy, the delight! From that moment, it reached across the years and lifted me. The remembrance rippled outward. I could touch the times of similar unrestrained pleasure with Daniel, with Jill, with my sister. Daniel's view of the afterlife: perhaps this is how we construct our heaven or hell. The flood of memories, the continuum I felt right then, standing in our yard, it was my paradise. Can I capture it in music? Probably not, but that won't stop me from trying.
I wrote this several days ago as a note for a future blog-entry:
loss of focus 2yrs v 5 yrs, 10? time
Are there a finite number of ways we can be?
This past Friday, for instance, was not such a good day. It was beautiful outside, the high-pressure weather making me feel like we were living a crisp mountain summer vacation. I felt lousy all day, though, barely able to get Daniel to his orthdodontist appointment. Yesterday (Saturday), same glorious weather, and I felt wonderful all day. We (the whole family!) went to the New Jersey Renaissance Festival with friends Sharlene and Elliot. We've been going for years, and the continuity of family and fun was rich, happy. Later the Ellentucks came down for dinner. It was a delightful day.
And today was good, and tiring, and "wifty". I can't anticipate. I can't tell.
Lots went on this week. Luke and I did our web-cast/keynote for the Australians, it went even better than we had hoped. Terry and I played our show at the Issue Project Room in Brooklyn, other things. Should I report all these events? What should this blog be? Should it be more a chronicle of my illness? A compendium of advice to my kids? Or am I using this primarily to spew out haphazard, semi-bogus thoughts about music and life? Reading back through some of my earlier entries, I see that to a certain extent this is an account of my disease, which is to be expected. After all, it was my original diagnosis and fear of early death that provided the initial compulsion to start typing all this into my laptop. I notice, however, that I easily flop over into the semi-bogus music/life musings. Cancer sort of gave me an excuse to do this, and coupled with the 'chemo-brain wiftiness', it just leads to that kind of text.
So much I write about memory and presence! I rummage through my life-experiences as a way of coping with what life has now become. I need my past to give me grounding in the present. Now that I've been dealing with all this for awhile, though, I've noticed that much of what I'm going through isn't as vivid as it was at first. The bizarro dreams, the "wiftiness", the lethargy, the manicness, they don't have the same currency as they did when they were all fresh and new. Of course this is to be expected. Been there, done that.
In place of the opening intensity of experience, I find myself thinking about the mental ways I attempt to manage the chemo and the cancer. As I've noted, the memory-dance helps me contextualize who and where I am. I also think I actively seek the connections, as they set me up for those sublime moments of transcendence when life seems to focus into those "freeze/flow" points.
I also employ another mechanism, kind of an empty-zen approach. On Friday when I was lying on the couch feeling poorly, a substantial breeze began to blow outside and through the windows. I think then that the sum-total of my thoughts in words would have been something like "wind. wind. trees. wind. sound. wind. leaves. sound. wind. wind." It seemed so timeless, but ever-changing. Zen indeed, and it helped.
Note the word "sound" in my empty litany of words above. Another way of coping is to start working on something. I've always wanted to simulate the sound of wind, something more than the simple filtered-noise that is often passed as 'wind sound'. I would like to capture the subtlety of soughing pine boughs, or the crackle of dry October leaves swaying in moving air. Once I start really thinking about puzzles like this, my body just sloughs away, and the mental work-flow-state temporarily exempts my from physical reality. This is one of the best escapes of all. This also happened on Friday, and it greatly helped.
I'm not really answering what this blog should be, really. Probably because I don't have a good concept of who I am writing it for. Ultimately, I hope I'm writing this for me, so that (as I said in one of my early entries) I can read through this and the future and remark: "My goodness! That was certainly an interesting time in my life!"
This week it has been a revisit to the old "mind/body" problem. I am continually amazed at how disconnected from the real world I can be, mentally, but how directly the real-world state of my bodily existence can affect my consciousness. First a bit of context -- this past Wednesday I went for my monthly Zometa infusion therapy. I also saw Dr. Pearse and the good news is that there is continuing good news. Protein levels, percentage-monoclonal, all those fun things are returning to normal. I asked: "How much longer will I be taking the Revlimid?" The reply: "Well, technically, indefinitely."
Yikes! Good thing I'm a flaky musician! I can convince people that my 'wiftiness' is just the way I am. Actually, Dr. Pearse is very aware of the various side-effects of the medications I'm taking. He followed the "indefinitely" reply with a discussion about adjusting the drug dosage to achieve a comfortable level of tolerance yet still keep the cancer at bay. He was more concerned by the steroids than the Revlimid, and in fact has reduced my steroid dose by half again (yay!). He says it is the steroids that are most likely causing the mental effects. At least I haven't committed any murder-suicides yet.
Dr. Pearse also said that their intention is to drive my cancer into either total remission or a 'stable state'. The particular outcome will depend on the idiosyncrasies of my myeloma. After that they plan to continue with the Revlimid for as long as it works (this is still an unknown for them). Faiza said one of the interesting things about Revlimid is that patients using it exhibit features as if they had undergone a bone marrow transplant. They still don't know what this means. I was ready to continue at full dose with all the drugs, but Dr. Pearse was concerned with some of the other side-effects, especially from the steroids, like muscle degeneration, etc.
So continuing with the drugs, and the mind/body situation: The infusion therapy tends to knock me down for a few days. Thursday and Friday I felt pretty lousy and washed-out. I would lie on the couch, watching our very green tree branches swaying against the very very blue sky, and I would drift, floating far away from any tether to corporeal existence. My mind was free, the mind/body distinction was so pronounced that the body wasn't even part of the picture. Total and complete 'wiftiness'. Not unpleasant at all.
Then I would sit up to do some work, and WHAM! the body reasserted itself. I could feel my mental processes closing down, like a fog descending around my cognitive core. The body wasn't just one half of the mind/body distinction, it crossed the barrier and determined what and how I could think. My internal mental language crash-landed from abstruse thoughts of the musical equivalent of blueness and greenness to something like: "thirsty. drink water. ... walk downstairs ... oh-no-I-forgot-to-take-out-the-dough-for-defrosting-and-jill-is-coming-home-in-five-minutes ... drink water. ..."
How to reconcile these different modes of being? One key element missing in my description above is the fact that my mental freedom is founded upon chemistry. Yep, the drugs that pummel my body (and the cancer, too!) also yield the unshackled feeling of floating above it all. The pharmaceutical haze that constricts my ability to reason is also the haze that softens the hard edges of reality. Which then is "real"? Physical chemistry creates the conditions allowing me to jettison a connection to physical reality. Personally, I like the idea that emergent epiphenomena can become fully-fledged phenomena of their own. The dream does become real. This may be the fundamental lie we tell ourselves that leads to sentience. And I like to float.
Last night we went to the local fireworks show at Etra Lake Park. What started several years ago as a relatively small display of colored explosions has become a large community event, using sophisticated pyrotechnics to paint the sky with light and sound. We arrived about an hour early. Daniel went to find friends in the crowd, Jill left to purchase the funnel-cakes being sold near the main park pavilion, and I stretched out on our blanket and watched twilight arrive.
The sunset was spectacular, a pink and blue extravaganza that was almost synthetically intense. As scattered birds and bats fluttered against the fading sky, the stars slowly appeared. Venus first, then others, and I remembered the star light, star bright, first star I see tonight opportunity to make a wish come true.
What do I wish for? What would I pray for? Time. Selfish time. Selfless time. Time to sink into the luminous pink and blue, time to finish, to be, to do. I want to see how it all comes out. I want to work for the happy ending.
Darkness fell, and I realized that time alone isn't my singular wish. Implicit in my desire is the quality of that time. ... have this one wish I wish tonight: time filled with goodness and light. I suspect that this depends on me.
It's going to be one of those days.
A welcome cold front came through last night, bringing about a 20-degree relief from the near-100 degree temperatures we had been experiencing earlier in the week. Jill was up early and opened the windows, and I awakened to a chorus of birds outside. Each call was crisply defined, every bird generating uniquely wonderful audio events. I felt I could listen forever. I felt I was hearing "forever". If I could write music like that... Solomon in all his glory was never so finely arrayed.
The music continued through the rest of the day. The wind in the trees -- oh that sound! -- even the cars shushing by on the street. My sister and her family came later in the day. I was on the couch hearing the voices of Bo and Stefan, my two nephews, playing "Dragonology" with Daniel (they are all about the same age). I couldn't really make out what they were saying, but the rhythm and cadences of happy speech were obvious. Outside a lawnmower down the street started a low droning. How can this music be so good, so rich? How can life be such an experience?
Some of the banality arises from the nature of what I try to communicate. Earlier this week Daniel and I went to visit Lian at her summer job working for Google. Her self-confidence, her obvious assurance and capability; the paltry word 'proud' doesn't come close to conveying the joy, the pleasure, the unbridled happiness I felt. The next day, going downstairs to see what Daniel was doing and discovering him intently poring over a Latin textbook (he does this for fun), I try the words amazed, astounded, awed (and those are just a few of the "a"'s). The mapping of my feelings onto the words is so diminished as to be almost unrecognizable to me when I read the resulting text. And Jill -- how can a meager word like "love" begin to cover the depth of connection, the transfinite bond we share, the life we have constructed together? The game of language simply breaks in the face of these ineffable states.
The best I can do is resort to the cliched expressions I've read and heard before. Lately I've noticed that even the things I think about are endowed with a triviality that would do a marijuana-smoking college sophomore proud. I'm pretty sure that my speculations on mind/body-ness are somewhere south of Philosophy 101, but (again) what the heck.
Today held a good example of this. I had awakened from a night of bizarro dreams again (I actually kind of enjoy these dreams), and I asked myself that time-worn question: "is it possible to dream something I have never experienced?" Then of course I began to churn out the endless variants, some obviously related to my work as a composer: "Can I think a truly original thought?" "Can I imagine something totally new?" "Can I create music that I have never heard before?" A few weeks back I wrote about a short note I had scribbled that made no sense to me later: "loss of focus... 2yrs v 5 yrs, 10?" I think it was an attempt to speculate about my future, something unexperienced and probably 'totally new'. Can I see it? Can I know it in advance?
I do have to say, however, that the sophomoric "like, hey, dude, can I think of things I can't think of?" query does have a gravity for me that it previously lacked. Try as I might, I can't imagine my death.
Oh my, what a word. And that is the word I heard today. When I started this blog, I had a fantasy that I would be writing this entry. I also figured that things would then return to "normal", the blogging would end, and I would rejoin my life-in-progress. Well, it's not quite like that.
Here's the data: my immunoglobulin levels are now all back within the normal range, and (more importantly) the monoclonal percentage of my immunoproteins -- or the amount that is manufactured by the cancer cells -- has gone from 95%(!) to less than 10%. Essentially my immune system has now recovered. Based on these stats and the absence of any additional clinical problems, Dr. Pearse said that he was willing to say I was "in remission". Yay!
What does that mean, though? Am I back to normal, and life will just resume where I left it? Not quite. Typically myeloma exhibits a relapse/remission track. A particular therapy or drug regimen will put it into remission, but at some indefinite time in the future it can return. The relapsed myeloma somehow changes and won't respond to the earlier treatment, so a new approach will be required. In addition, the length of time before relapse is highly idiosyncratic. I asked Dr. Pearse when he thought mine might return. He usually doesn't engage in this kind of idle speculation, but this time he looked thoughtful and said "probably two years". So, we wait and see. I'm realizing that the way I measure my life will be much different now.
There are some immediate things that will change. I cancelled my bisphosphonate infusion-therapy appointment for next week. Dr. Pearse wants to do the infusion only every three months now. There are some serious side-effects associated with the heavy use of bisphosphonates, and his thinking is that in the absence of an active cancer we don't need to protect my skeletal system as strongly as we had been. Again, yay! He also wants to start reducing my drug/chemo dosage a lot, as the high dosage won't be necessary to suppress the active cancer. Yay yay yay!
The final interesting news is that Dr. Pearse decided to hold off on harvesting my stem cells for a future autologous transplant. This is when being treated at a research facility with access to the latest information about myeloma makes a difference. Apparently they have discovered that Revlimid tends to inhibit the mobilization of stem cells in the blood, making the harvesting much more difficult. If I do have to move to another therapy, the drug he would most likely use is Velcade. Velcade has the opposite effect and acts to mobilize the stem cells. He said that we could stop the Revlimid now, or temporarily put me on Velcade, and then do the harvest, but his thinking was just to wait until it might be necessary to change treatments and do the harvest at that point. If I never have to change treatment, the harvest won't be needed anyhow. I'm convinced!
I'll keep on with the Revlimid and Dexamethasone for now, lower dosage, and with a bit of luck I can be one of those who write "I've been in remission for 15 years..." We shall see.
Life will change again. What kind of person will I become next? What experience have I gained? What lessons have I learned? I think I will keep writing this blog, because it helps me work these things out. For now, though, I think I'm going to relax and enjoy the "being alive" part of life. Yay!