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I thought about stopping this writing, but there is more I want to say. Should the myeloma relapse I don't want to be caught 'short' with the feeling of much left undone as I was six months ago. Indeed, there is still a lot I consider unfinished, but now I am at least making some feeble attempts to dig into the future. Plus I like the way that this text-activity centers my mind. Right now I'm sitting on our upstairs porch, looking out over our back yard. The sun is shining down through misty green leaves, and the bugs and birds are announcing it will be hot and humid today. Writing this makes me more awake, more aware of the physical presence of life. I look out over the leaves and grass, the infinite gradations of green. The sunlight turning patches of myrtle into pools of shimmering grey. I hear blue-jays in stereo. I breathe. I'm alive.
The future doesn't unroll as expected. The final Harry Potter book was released this past weekend. When I first learned of my disease, I had an internal, symbolic fear that I would not learn who was set to die at the end of the series (I even make a brief mention of this in my entry for 2/7/2007). I assumed I would be either dead or completely debilitated by a bone-marrow transplant at this point. It's wonderful to be so wrong.
Yet I still persist in trying to forecast my life. One method is to assign prophetic value to contemporary activities. I read Harry Potter and the Deathly Hallows in one day, staying up way too late on Saturday night to reach the end ("just one more chapter, then I'll go to bed..."). After I had finished, I thought: "Wow, I really dashed through that. I guess it's a sign that I'll have to live my life in that kind of rush, because I MIGHT BE DEAD SOON!"
Goodness gracious, what a silly thing to think. Yes, it may be true, but it just as certainly may be false. Obviously. What happens is never what we expect, because it's... different. By the time we reach tomorrow, we're changed. And then there's always that fundamental randomness of life thing. The last six months have hammered that lesson into me with extravagant force.
I meant to write this entry a few days ago, but I've been feeling rather low. Even though the remission news is terrific, my drug-load hasn't been adjusted yet. Today is better.
I haven't written here for a longer span than when I started. Partly that is because of traveling. We (Jill, Daniel and I) went to visit our family farm in south-central Iowa with my sister's family and my father. Right now we're back in Indiana at my childhood home. Memories? Oh yeah! A lot more about this later.
I also haven't written much for another reason, though.
Because of the drugs, my brain is still fairly clouded at times. Perhaps
it is a consequence of the duration of chemotherapy, or perhaps it is
the process of accommodation to the cancer/remission, but I'm having
difficulty recapturing the sense of focus and mission that visited
me when I first became directly acquainted with my personal mortality.
I think I knew this would eventually happen. I read in my
very first blog entry:
Later for this. Right now I want to spend time with everyone.
I can also see the trees in the window as they are in other contexts. I can feel the dry/damp diminishing of light that starts to close down during October. I can see the cold-blue (but oddly comfortable) rattling wind starkness of December. I can imagine the sharp quartz light of January, and the stirrings of spring; I remember mud with a crust of frost on the top, but soft underneath from the grey March rain.
All these visions are awash in emotions, barely contained. They are full-body/full-mind experiences. The window I am using to conjure these pictures is in the living room in the home where I grew up. In that room, I lived these scenes. Why do I write this down? I don't know. I was there. I am here.
The light was odd to me, though. I asked Jill about it, and she didn't really notice anything extraordinary. The sunlight seemed unnaturally bright. The sky was so transparently blue that it was like an intrusion from an outside reality. People talk about the special qualities of the light in Provence, but I've noticed that most places where I've spent some time -- Indiana, Iowa, Greece, Japan, etc. -- all have a particular lighting scheme that I can associate and identify uniquely with them. The light here today was not New Jersey light.
Perhaps it was the juxtaposition of fully-leafed-out August vegetation with late-September temperatures, or perhaps (as Jill pointedly suggested) it was the drugs. Oh the drugs! Whatever the reason, it was an exceptional day. As always, my impulse was to imagine how to freeze the moment, to capture the expansive happiness I felt seeing the infinite gradations of green leaves etched against the otherworldly deep-blue of the sky. Actually, "sky" seems too small a word for what covered us today. It was the timeless blue of the daylight heavens, the firmament.
It is impossible to confine today and make it fast, though, because in this instance to freeze would be to destroy. This day was a living experience. Each perceived moment had to be connected to the previous, forming a continuous stream. Only in the rush of this stream would you know "hey, this is something!" To stop the sequence would be to shut off the sun, to fragment the continuum. The on-going comparison with what preceded and what followed, that was the essential act that gave this day meaning.
Music is like this. It has to flow. I've been listening to a lot of slowly-evolving pieces lately, having discovered internet radio sites like stillstream.com and downloads at sites like darkduck.net. Don't get me wrong, the best of these 'ambient' pieces are full of motion and change. They do treat the standard dimensions of musical time in a different way, however, choosing to align movement along axes of timbral mutation or subtle rhythmic or harmonic shifts. An alternate method for representing chronological progress, to be sure, but music has to flow, somewhere.
Notice the correlation I've created between the futility of stopping the flow of the day or the flow of music. Given this correlation, my impulse is to translate my picture of today into music. How do I do this? Why do I this? When I was younger, these questions seemed so straightforward. The process was an amalgam of a few ad-hoc data transcoding techniques I would invent coupled with (at the time) obvious emotional judgments: "yeah, that's it." So simple. No longer simple, though. Life is now resonant with a history, a knowledge I could not have because it didn't exist for an earlier me. "Obvious" is not the word I can use to describe any of my emotional judgments. An active penumbra of experience surrounds everything. It can be imprisoning, it can be invigorating, but it's there.
And why do I feel this impulse to represent? Why do I think: "wow, today would be really interesting translated into sound"? In youth it just seemed the thing to do. Now I realize that days like this won't come along forever. I want to mark them, to remember them. I don't want them to die. Today was beautiful. Maybe in music I can stop it from vanishing too quickly for me.
This is good, because I've really been feeling out of it lately. I'm not sure why. Perhaps the chemo is finally wearing me down big-time. The last few days/weeks/whatever -- it all runs together sometimes -- have been just a buzzing and slightly nauseous blur. Today I felt like a lump of solid material, no flowing, no floating, just inert.
So, yay! about the drug reduction. I wonder if I'll feel 'normal'. I wonder what that means now.
I don't think that this reality-alienation is necessarily a bad thing. Jill and the kids will probably disagree, as dealing with a strange Brad has to be taxing in various odd ways. But I can still look out upon our back yard and marvel at the infinite range of the color green presented by the trees and plants. I can immerse myself in the three-dimensional audio of our August cicadas. Moments in life are precious in a way they weren't before I knew I was going to die some day.
Here I begin to descend into platitudes, reflecting the breakdown of language to communicate deeply-felt emotions. "Life is precious" -- well, yeah. Others: "seize the moment", "be here now", "live for the day", etc. All shopworn by cultural overuse, but each phrase was born from an underlying truth that doesn't surface all that often. Drugs and death tend to give it blunt exposure, though.
For example, a large pine tree died along the path
leading into the woods behind our house. The tree is
easily seen from our upper back porch. There is a beauty
in its death, the golden-brown boughs set strikingly against
the ocean of green and blue that forms the natural
New Jersey summer backdrop.
I look at this scene, and the cliches bubble up, the circle of life, the transience of existence, the intense value of every lived instant. The expressions have been rendered new-agey banal, but contemplation of the dead tree makes me want to carpe the diem, to live in the moment. Life actually is precious, and today I feel that dearness strongly. I'm not sure that "being here now" is all there is, though, because it all gets entangled with memory and resonance through time. That's another discussion. For now I'm just happy to be sitting on our porch, looking at the golden tree, and feeling physically better than I have felt in months.
Twilight, and I'm sitting out on our upper back porch, listening to the burbling of the "musical water fountain". I built it for Jill as an anniversary gift a few years ago. It's still a work in progress. The bugs and frogs are beginning their nighttime frolic. The neighborhood sounds are the summertimes I recall from my childhood. Right here in New Jersey even. Daniel and Jill are out on a walk around town. This is all good. This is all peace. This is a life that will be hard to leave, but someday we all will have to do that. I hope these are memories that retain a kind of immortality. They sure seem timeless that way. Maybe that's the key. Happy birthday, Dad!
Of course every little physical deviation from "normal" now becomes a big THECANCERISBACK! signal flag. I don't think mine hits as hard as people in remission from other cancers where the good news means the bad cells are gone, because I know that the myeloma is still lurking. The question of "back" is moot. I just want the drugs to keep it at bay, preferably for the next forty years or so.
What do I do now? I've been keeping my "TO-DO" file going, but when my brain was fogged-in earlier in the week it was even hard to figure out the ordering for doing simple daily tasks. I'm on leave from Columbia this year, a planned sabbatical, and so much seems possible. Or impossible.
What do I do now? That query begs a few Big Questions. Purpose? Meaning? yikes.
Today I want to write about music again. While I was feeling poorly last week (whine, whine!) I did a fair amount of listening. Music often helps take my mind away from the mundane aspects of illness. One of the CDs I had just purchased was Alison Krauss' new release A Hundred Miles or More.
When I was in graduate school, one of my very good friends spent a great deal of time and patience walking around campus with me. He introduced me through conversation to philosophical works and musical ideas that, with my hard-core engineering/science undergraduate background, were only vaguely present for me. He was a major admirer of the composer Gustav Mahler, and tried -- in vain, I'm sorry to say -- to enlist me as a Mahler-fan.
In telling me why he was so attracted to Mahler's music, he described the notion of the sublime in art, or the concept that certain works carry such 'absolute greatness' (Kant's description) that they exist beyond beauty, coextensive with the vast greatness of the Universe (Schopenhauer). For my friend, Mahler's music opened the gateway allowing sublimation to the immensity of all existence.
It's a testament to my middle-brow, run-of-the-bourgeois-mill aesthetics that my experience of the sublime comes not from Mahler, but instead from a piece like the third track on the Krauss CD. It is pop-bluegrass music, well-recorded and very well-played to be sure, but very nearly sonic vapor compared to the overt massiveness and depth of a Mahlerian musical epic. I think what I do is to take the vapor seriously, and also personally. This allows the universe to come in and smack me sublimely over the head.
Because my experience of the Krauss piece is so fresh, I can tell you exactly where and how the music was able to flatten me psychically. The song on the CD's third track, Jacob's Dream, written by Julie Lee and John Pennell, is supposedly based upon the true story of two small boys who wandered off from their family cabin in the Allegheny Mountains during the early spring of 1856. The track is beautifully performed and recorded by Krauss and her amazing cast of accompanying musicians (bluegrass stars like Sam Bush and Stuart Duncan).
The song has a typical verse/chorus structure, and in the choruses Krauss sings the part of the two lost children:
Here is the first time Alison Krauss sings the chorus, the plea of the two boys:
That organ note is god. Or maybe fate. Or the unyielding workings of the Universe. It doesn't flex, it doesn't bend. It doesn't care. In the face of this realization, I am sublimely ruined. At this point in the music, the kids are slowly dying, and the father Jacob is receiving dreams from his God telling where they will lie. The death of children; this is absolute human tragedy. How can our puny lives stand against such remorseless and relentless processes? I am sublimely demolished. The organ used isn't a grand, high-mass pipe organ channelled from a centuries-old cathedral. It is a Hammond, an electromechanical, somewhat clunky, profoundly human contraption making that sound. It is a personal instrument, but connected through the music directly to a boundless reality. The sustained note is timeless, the gateway is wide open and in the face of all there is I see just how pathetic we are. I am sublimely dissolved.
Here's what is strange: the music ends, I return to myself, and I want to do it all over again!. I think I played Jacob's Dream about ten or fifteen times in a row when I first heard it. Dissolving in pathos, confronting the sublime, whatever it is. Maybe there is a seed of an answer to one of the why-am-I-here Big Questions imbedded in this behavior. This is potent music for me, all my protestations of conventional and unremarkable bourgeois aesthetics aside. It matters, and maybe by reliving and communicating the experience I can begin to understand it, to make it work for me, to help deal with the merciless world we inhabit.
And so tomorrow we are taking Lian back to Brown University for her senior year. I can hear the sustained organ tone in the background now, and I want to grab it and shake it and demand "no! stop! don't change!" Time continues implacably along the only linear path we know, with all the accompanying joy and sadness that turns that path into a life.
Here is the song: Jacob's Dream.
Daniel hides his young-teenage excitement and strides confidently off to catch the school bus. We delivered Lian to Brown last weekend where she is on the cusp of a new chapter in her life. Oh I love my son! Oh I love my daughter! This life, it is a miraculous thing.
Anyhow, more coming later, I'm almost caught up. In the meantime,
the drugs still operate, and I'm accommodating myself to the
notion that I'm going to feel kind of weird for the rest of my
life. At least the peaks and valleys are much smoother now (reduced
dosage), although there are still days when I feel pretty out-of-it.
I think I'm lucky, though, if this is the worst of it. Others
have to deal with much more. And the intense-green trees and the
saturated-blue sky and the vivid-stereo insect sounds and the chill
of fall is coming and time just goes and goes.
One of my favorite movies when I was failing at grad school at Purdue was Herzog's Stroszek. At the end of the film, Stroszek commits suicide, and a sheriff is radioing it in, and there is this arcade-thing with a chicken inside at the site of the suicide -- you put in money and the chicken gets electric shocks and jumps around or something. Anyhow, the sheriff says "We got a dead man on the chairlift, and we cain't stop the dancin' chicken..." At the time this line seemed so appropriate. But now, with kids and family and friends and job, as tangled and hectic as everything gets, I actually enjoy the chicken-dance. :-) brad PS: I'm pretty sure I told you this story before. Another fun part of getting old is you get to repeat yourself a lot
Part of the trickiness was using a lot of Perry Cook's physical models for the synthesis. The tuning of a few of them is relatively difficult. You can hear this in the ascending "saxophones" that enter at 5'15". The tuning is slightly 'off', but I like the resulting effect. There are also a few minor clicks and digital artifacts at different points in the piece, sounds I would track down and try to eliminate when I was younger. Life isn't pure, ya know.
In addition to the Perry physical models, I used this piece to try out a few synthetic ideas of my own. The jet-sounds are totally artificial. I was attempting a sonic recapture of an earlier memory. Jets have been in my ear lately because of the insane Iraq war. Many aircraft from McGuire AFB have been flying over our house. The windy sounds at the end are also made by hand. I'm still poking away at attempts to model the sound of wind in trees, more work to be done. These aren't too bad, though.
I think I like this music. I hope a few others enjoy it. It is a composition for my remission. I want to float away at the end, gently at peace in the sounds of autumn wind through colored leaves and green pine needles. Oh what an obvious guy I am.
The weather has been just bizarre lately. Here in New York, at the end of September, we are expecting temperatures into the 90-degree-Fahrenheit range. It's as though time has been shuffled. It all seems jumbled, out of sequence. Not necessarily bad, just weird. Madison's weather was glorious. It felt like very early autumn the entire time, with a hint of crispness in the morning followed by an intense-blue day.
On Saturday morning, we were driving through the University of Wisconsin campus. It was a huge Wisconsin v. Iowa football weekend, and I had forgotten what those weekends were like in a Big-10 university town. The sky was an intense-blue, a midwestern blue, the color of it triggering memories of my past Big-10 university town weekends. What surprised me was how those memories were laced with a light melancholy, not because of some present times-gone-by nostalgia, but a sadness that was imbedded in the past recollection itself. Those lovely fall Saturdays contained an internal discontentment.
I finally figured out what it was. Usually I faced one of these Saturdays after a week of procrastinating and not doing work that probably needed doing. Or I had made promises, unfulfilled obligations. The commitments we make in life, large and small. And I knew I most likely wouldn't do them. Instead I would swim in the blue, selfishly ignoring those things I should have done. I was a small-time disaster area.
Often I would do something sideways, like maybe go record music that in all likelihood only I or a few friends would ever hear. I would walk, or I would drive, wandering with no particular destination (oooo, would that be a Metaphor for Life?). And then I'd feel bad later, knowing I didn't get much "real stuff" accomplished. Funny, though, I don't really have any big regrets about my past, but that depressed feeling of letting people down is a noticeable element of that midwestern blue sky for me.
I think there's half-baked wisdom to be imparted here for Lian and Daniel, something about doing what you want to do, but being sure you do it. Life can be what you make of it, blah blah blah, and it turns out this is largely true. Making choices, knowing that you are in fact making choices, sometimes that's the hard part. I don't have this sorted out really; more later? What the heck am I saying?
One of the performances Greg, Terry and I did was on Gregory's show Remember Those Quiet Evenings (RTQE) Sunday night. The music we played can be downloaded here. I like the third piece the best right now.
Dr. Pearse told me to stop taking the steroids altogether, because there really isn't even a reason for them at present. I'm still keeping on a reduced dose of Revlimid, and it still makes me feel pretty vague about the world. I'll have to live with the 'wiftiness'. I can indeed live with the 'wiftiness'. And I will even continue to have a convenient excuse for phasing in and out of various situations, what fun.
At some point Dr. Pearse wants to take me off the Revlimid in anticipation of a stem cell harvest. I wondered to myself if I should plan a stem-cell hoedown, or a stem-cell feast to go after the harvest. Ha ha ha. Things got serious, however, when he told me about decisions I will face in the future. Despite the recent good news, myeloma still menaces. Dr. Pearse said that only a few years ago, the mean mortality from time of diagnosis was 5 years. He said he surely believes that is no longer true, and they don't really know what the projected mortality is yet for drugs like Revlimid. However, he said that the reality was that it may be 10 years. Maybe less, maybe more, but the clock is ticking faster than my complacency was allowing.
Dr. Pearse then outlined potential choices I might make. We talked about the use of my own stem cells in an "autologous" stem cell transplant. Then he discussed the possibility of attempting an "allogeneic" transplant. This would involve stem cells from a genetically closely-matched family, most likely my sister Brenda. The more standard 'auto' transplant typically buys more lifetime, but the 'allo' transplant is the only current therapy that offers promise of an actual cure for the disease.
Why not do the 'allo' transplant? Well of course there is a catch... the transplant doesn't work for everyone, and there is a 25-50% mortality rate for the procedure. On top of that, if graft-versus-host disease happens (again a substantial percentage), I would wind up with what Dr. Pearse described as "the worst lupus imaginable". Not fun. To top it all off, the transplantation itself is extremely stressful. I would be out of commission for the better part of a year, including a month or so in the hospital. All in all, Dr. Pearse said that he figured the 'allo' procedure would be a 50-50 proposition, with the two outcomes very different. Because of these factors, they typically recommend an allo transplant for younger patients. Even though I am on the young side of multiple myeloma in general, I'm getting towards the end of the age-range that indicates for an 'allo' transplant. Yikes.
Choices, choices. The fundamental randomness of life, but now with probabilities attached. A cure! Roll the dice, though, and the chances may lead to agonizing death. I'm not really good at playing the odds. I've never even been to Atlantic City since I moved to New Jersey almost 25 years ago. On the other hand, we all make these choices every day. We just don't know the numbers. There is an automobile commercial now running that shows people getting into their cars, looking at the camera and making statements like "On the way to work, I'll be in a three-car collision" or "I'm about to drive down the street and get smashed by a truck running a stop sign." What are those probabilities? What is the vanishingly-small number that represents the universal probability that I will type this question, right... now?
I wrote in my previous post a few hazy words about making choices, living life. Kids -- do what you want! Our desires are thrown onto a field of pinging probabilities, though. Fundamental randomness, be prepared for that. Even though I don't play the casinos, I will bet on this: life won't be what you expect. Cure? Painful death? And no matter what the decision, I'll get in my car and go for a drive.
The sound of summer, the bending of autumn, the water in spring. And the winter. Clarity. They're all here, all the time. They don't really divide so cleanly into seasons, but the changes are real. They make me so happy! They make me so sad!
Today finally feels like fall here -- "appropriate weather" I tell the kids -- but yesterday it was still summertime. Highs near 90 degrees F, hot and humid, foggy even, at night. Very bizarre for mid-October in New Jersey. Driving back from Princeton at midnight in this displaced replay of summer, I was transported back to my graduate-student nights returning from the computer center. Jill was finishing her graduate work, and our entire lives at that point were built on 'possibility'. Everything seemed open, everything seemed potential. Or at least that's how I recall it now.
As I drove, imagining a younger Brad, I put in a new
CD with a piece by an Icelandic composer, Johann Johannsson.
I had heard it on an internet radio stream and really enjoyed it.
Here is an excerpt from the beginning:
The restrained-heroic sound of the music, the overlay of past and present, I felt like a four-dimensional being. I was able to shift effortlessly from past to present, stitching time together.
The past: It was all so wonderful! Jill and I were discovering who we were, mapping what we thought would be our future. Some of the maps were accurate, others were way off the mark (but in interesting ways). The present: It's still wonderful! Sure, Jill and I are now grappling with vile diseases, sure I wonder about the terrible state of the world, and sure I feel pretty darned worthless myself a lot of the time, but somehow driving home after a night with good friends, hearing this quietly passionate music, my always-lurking desperation mutated into an immanent awareness of how amazingly precious life is.
DANGER! DANGER! TRITENESS ALERT! "amazingly precious"? Yikes, I know how banal these sentiments seem when poorly-translated (just count the commas in that previous run-on sentence) into written form, but that doesn't diminish the intensity of the experience. So why write it? I think this one of my blog-entries intended for Lian and Daniel. I want them to know the marvel of existence. I want them to know the vibrant essence of being. I want them to know joy. I worry that they get too ensnared in the minutiae of doing. I get concerned that their friends don't enable the long view, the sensing of how incredible it is to be here. I worry that they worry too much; and I'm sad that I may be a part of that.
I don't know if Lian or Jill (or someday maybe Daniel) read this blog, but I fervently hope they can find their own happiness. Sometimes you find it, sometimes you have to invent it yourself.
Oh my, I just can't help spouting platitudes tonight. Wifty
Brad indeed. Listen to music, perhaps that can capture
better what I can't say. Maybe I'm like this because I haven't
written here for awhile. It's all gotten jammed up!
It comes out in clots and clumps! It makes ridiculous sense!
I have been busy the past week, though. Last weekend Terry,
Gregory and I -- joined also by Darwin Grosse, WII-musical-instrument
performer extraordinaire -- played at a
vendor party during the Audio Engineering Society
Convention in New York. Luke Dubois did real-time video,
allowing us to pretend to be cool. Here is a link to
some of what we played:
So kids, remember: Life can be Fun! Hold fast to your dreams! Don't Worry... Be Happy! Seize all the moments! This above all, to thine own self be true! Oh never mind... the drugs apparently still operate. But you know what? Life really can be fun.
Maybe it should be, though. Yesterday I went to pick up Daniel from an after-school activity, and about 1/4-mile outside town was a line of several cars (unusual for Roosevelt). One of our neighbors was in the middle of the road directing people down a side street. Apparently there had been a terrible accident. I believe that two high-school students from Hightstown were seriously injured, possibly killed. No emergency vehicles had arrived yet. What would have changed my life immediately, one minute? Two minutes? And how nakedly egotistical is that to measure events by your own selfish metric? How will this tragedy affect me? I guess that's the kind of creatures we are. At least the fundamental life-randomness keeps our egos guessing.
The fear still does quicken at times, though. Today I went to Weill-Cornell for my three-week checkup. I punch the elevator button for "AMBULATORY ONCOLOGY" and the words acquire real meaning. Yes I have cancer. How long will the "AMBULATORY" apply? Today I was yet able to walk out of the hospital, with happy news that there are still no myeloma proteins floating around in my bloodstream. I stopped by the little chapel again, with a renewed appreciation of time, a gift. What will I do with it? Lately I've been drifting a bit, and I'm not happy about that.
Each of the memories brought forth from the books were tiny miracles, days filled with laughter and delight. Reading and playing with our children. My joy in recall is beyond expression. At the time, did I know how marvelous it was? Did I realize that I was building memories to sustain me? Was I aware of the magic that would reach through time to touch me now? Probably not, because I think it is during the act of recollection that we intensify the experience. The "golden years", the "good ole days", the way we were... I suspect this is part of the trick I try to play with music, too. The music becomes a memory-manufacturing/intensifying machine, at once building an impression of something recalled while simultaneously creating a remembered context that surrounds the 'new' memory. A time-spanning, constructed virtual reality. A place I want to live, but presented as if I have already lived there. Maybe this is an out-of-time immortality -- oh what am I saying here? I guess that contemplation of memory and time, confounded with the ever-present 'wiftiness' now in my life just makes me weird. Get used to it, Brad.
Jill returned from Uganda yesterday. The trip was good. She had a great time, and the work for the International Atomic Energy Agency went very well. Thinking of Africa, I started reading Dave Egger's new book What is the What while she was gone. Yikes. It's a true-story but fictionalized account of the journey of one of the "lost boys" of Sudan. These were kids whose parents were killed, often brutally, during the recent Sudanese civil war. A small portion of the surviving children somehow managed to escape to UN refugee camps, and an even smaller portion were resettled to other countries (US, Canada, etc.). I prattle on in this blog about realizing mortality, confronting death, but it's nothing like the constant hammer blows of brutal existence and the utter cheapness of life that a large part of the world faces every day. In Uganda, Jill found only one mammography machine for probably thirty or forty million women. It makes me feel small.
Do I know how lucky I am? Today was stunningly beautiful, the trees are just beginning to reach the peak of the autumn color season. Am I aware of how dear the memory of this day may be to me in the future? Like I asked before, do I know how marvelous this is? I think sometimes I do, vaguely. These are the moments I want to freeze, the ones I want to extract from the flow so they can be held permanently. I wish I could send them out into the world, to envelope the suffering, to isolate the pain, to show gently 'this is how it can be.' How lucky I am, how do I deserve the goodness I've had. What can I do from here. Time is probably running out.
What do I mean by this? Ever since the news of my remission, I have half-expected (well maybe even more than half) to wake one morning and discover that everything is all better! I'll spring out of bed like a 20-year-old feeling absolutely wonderful, Lian and Daniel will be completely happy, Jill will love me more than ever, the news will report that George Bush has resigned and Dick Cheney is in prison, the Iraq war over, all planetary suffering banished, and life will be suffused with a golden light of well-being.
Of course this happy discontinuity hasn't happened. Instead, I awoke this morning to muted shades of blue out the window. These weren't vibrant cerulean or sparkling turquoise blues, but were the steel-gray blue of a rainy October morning, slowly, slowly fading lighter. My hands and feet had the slight numbness/tingling that I assume is residual from the Revlimid I am still taking. I felt a little nauseous for some reason, and my body was kind of creaky all over. Is this from the cancer/drugs, or is this simply that I am getting older? For me, now, I guess it is both. Sometimes I do feel good again, better than I have in months, but then I succumb to an intense tiredness. Is this "normal'? What is "normal" for a middle-aged guy battling cancer (and hopefully winning)? Why can't the discontinuity occur and I become physically invincible again, like I was when I was 27? Give me the drugs! Give me the therapy!
I know this isn't possible, and I'm not sure I really want that
kind of regression. There was actually something very pleasant about
the steel-gray blue fade this morning. Maybe it's that 'perspective'
thing. Maybe it's a fine melancholia, an October rain that
helps keep me rooted. Despite my slight physical discomfort,
I think I enjoyed this morning. I can live like this.
I remember this shift happening when I first learned I had multiple myeloma, but the displacement was in the opposite direction. I would wake, look out the window, all seemed fine, and then the other reality would slide in. What was odd is that it didn't seem as real. I kept thinking that all the cancer stuff was 'made up', that someone was going turn around and say "fake out!" and we'd have a good laugh at how everyone was fooled.
At the same time, however, the onset of the disease seemed almost 'normal'. Life was supposed to go that way. There was a script to be followed. I just finished reading the What is the What book, and the way the Sudanese civil war crept into Achak Deng's village had this same sense of 'normal'-ness. I remember this also from the movie The Killing Fields -- reality was fine, and then it... shifted. There was no hugely apparent rupture in the world, but everything irrevocably changed. Normally.
Of course the realization that life can be so plastic leads to the desire to appreciate every moment, to value all that you have lived. Despite the hopelessness of his situation, his thankfulness for the tiny treasures of life is what kept Achak Deng alive. I hope I can remember this lesson when the petty annoyances of existence start to encroach again. Reality can be displaced. Bad dreams can end, sometimes.
Almost everything at present becomes a metaphor.
This is where I am now. The medicine is working, but it reminds
me that it is working. Fall indeed.
Excuses, excuses. Now the kitchen is coming together, the stove and sink are usable again, and I finished updating My Music Book to a more recent Java release. The newer version will run on newer Macintoshes.
Why spend time updating old code, and (also) updating my web page, rehashing stuff that is probably of interest to me only? I guess I enjoy stoking my sense of futility sometimes, maybe to set me up for another big sabbatical project. Or I'm using these revisions as a way to pretend that time isn't passing, or procrastinating the start of the big sabbatical project for lazy reasons, or... who knows? Lots more to say on this. More coming.
What is this obsession with memory that recurs over and over again in this "blog"? Why do I want to set down my experience, hoping that it may resonate with someone/anyone? I guess when you know you are dying, like I did when I started this writing almost a year ago, you want to leave something behind that signified your existence. This seems so fundamentally trivial, a pathetic ego trying desperately to establish a mark of meaning. Is there anything I've done that remotely suggests that I even deserve such a marker? Not hardly. What I do is just ridiculous. It's no wonder that Jill considers my work without value, or that my father doesn't understand why/what I do, or that my kids just think I'm bizarre. There is no value there, nothing really to understand, and my life actually is bizarre. I sit around and make weird sounds. Years from now (maybe) I'll listen to them again and go "huh".
Sometimes when considering what I do, I get delusions of importance. Yet even if they were true, I am reminded of Shelley's famous poem Ozymandias, except that I quickly realize that I haven't constructed any pedestal, there is no stone visage to shatter. My life-work is the sand already.
Cheery thoughts, eh? I offer them as partial explanation for my recent non-writing, and also because I set out to make this blog a fairly unedited chronicle of my cancer experience. This is part of it, because two weeks ago a big change occurred in my treatment. My last few appointments with Dr. Pearse have been terrific. There appears to be no detectable myeloma activity. We decided to move ahead with the plan to collect my stem cells for potential use in the future (autologous bone marrow transplant). This is great news! The big change is that I stopped all my drugs in preparation for the stem cell harvest, so right now I am pretty much back to my "normal", un-drugged self.
I had forgotten that "normal" for me carries with it an underlying melancholia, a low-level sense of the fundamental trivialness I mentioned above. Or perhaps more a feeling of ultimate futility. In any case, I certainly hear it in a lot of my music (that memory-tracing again), such as Small Pieces number 5 or summer2006 proj 3. With the end of the drugs, I'm feeling like my old self again, underlying gloom and all. At least I know that this gloom will probably pass, and that for some reason the depression often goads me into doing more music. In fact, I just finished another OS X Dashboard widget for the holiday season: hohoho2dmatic. Hope, peace, joy. Yeah.
I had planned to write a few more entries here in the past two weeks. I even scribbled out a few notes, if 'scribbling' can happen using a text editor. These notes were labeled "11.26.2007":
family get together fundamental trivialness context: no drugs, melancholia (pieces) death of joy kids
haven't written, time in the sabbatical when you wonder what the heck projects seems like fluff, but essentially that's what I do. personal, egotistical approach. Reminders: piece for example. -- is remarkable how it takes on a patina of age happier time obsessed with memory? driving by the airport deja vu story good news from Dr. Pearse
family get together -- the Thanksgiving gathering, and all the latent love and tension that swirls in these things.
fundamental trivialness and context: no drugs, melancholia (pieces) -- discussed above.
death of joy/kids -- Oh how melodramatic! But this 'death of joy' does seem to happen as you get older. I want Lian and Daniel to avoid it as long as possible. They have choices they will need to make. I keep telling them "life can be fun!" Sometimes I even believe it.
haven't written, time in the sabbatical when you wonder what the heck -- I am at that point. I'm not having to deal with the daily aspects of my job at Columbia, so that opens up space to wonder about the whole enterprise. I'm starting work on a substantial project, and I can pretty much figure in advance that it will only matter to me. However, I have finished a few articles and have written an inordinate number of recommendation letters and evaluations. Maybe that's why I'm here.
projects seems like fluff, but essentially that's what I do -- What a life. I believe that I do write good letters of recommendation, though.
personal, egotistical approach. Reminders: piece for example/is remarkable how it takes on a patina of age/happier time -- This was referring to my use of music as a personal memory-diary, specifically about the summer2006 proj 3 piece. I had listened to it on the way home from my good appointment with Dr. Pearse, and it struck me that I wrote it during a relatively happy time in my life. The strange rolling sound you can hear is the sound of a ball-bearing falling down through one of those tilt-top labyrinth games. During the Christmas/holiday break of 2005-6 we played this game a lot. It was an emblem for me of our family just being together. It was a happy time. It was a very happy time. I was surprised to hear in the music, composed later to be sure, the latent melancholy I have been describing. Time passes, life winds along.
obsessed with memory? -- written about above.
driving by the airport -- I was driving right by the Newark Airport almost exactly when Lian was changing planes to travel to Seattle for job interviews. I waved in my car and said "hi Lian!" She has since received and accepted an offer from Amazon.com and will be moving to Seattle at the end of this coming summer. Time passes, life winds along.
deja vu story -- this actually happened, and it happened before I stopped the drugs. One morning while eating breakfast, I had a massive feeling of deja-vu. It wasn't just one action or one brief span of time, the entire morning seemed completely pre-ordained or pre-lived. Fixed in stone, somehow. I am Ozymandias. It cracks and fades.
good news from Dr. Pearse -- and it has been on-going good news. I remain in remission, even though it has only been for several months. How in the world can I feel depressed? The fact that I am a whining idiot with amazingly positive things happening paradoxically fuels the malaise. I truly don't deserve this good fortune. That makes me sad. And my big, fat, ego-driven, inconsequential and ludicrous response will be to go make more weird sounds. Wonderful.
So it seems I'm still not completely out from under the drug-free depression. The past couple of days I've felt a bit "drifty"; not in the drug-fueled chemo-brain mode, but more in a semi-aimlessly working on small things pattern. It's not a bad feeling, and I get a fair amount accomplished, but what I do seems all disconnected. I have in mind that I should be working on a Big Grand Project. Instead I'm fixing up web pages, adding slight edits to descriptive documents, replacing floor tiles, fixing broken electrical outlets Maybe this is the best right now. I'm in kind of a 'holding pattern' prior to the stem-cell harvest, with a whole slew of medical tests and appointments stretching for the next few weeks. These aren't terrible, invasive procedures, and the assessments need to be done, but they do take time.
Last year at this time I was also going through a series of medical tests, but the future was a lot less determined. Each diagnostic procedure took me further down a road of fear. It turns out the fear was justified, but once the final pronouncement was made the fear mutated from an acute anxiety to a longer, extended contemplation of dying. I no longer have the same type of growing dread I did last year. I've been down that road already. What do I fear now? Probably not living up to other's expectations. I am returning to normal. We are strange social creatures.
It was really windy the past few days, with a few snow flurries today. I recorded the wind, there is something about the massive sound of change that I find oddly comforting. Maybe I'll use the recordings in a future piece. Here is a short excerpt:
I think about last year at this time, when the uncertainty was slowly giving way to a realization that I had a serious illness. I was engaged in scheduling more medical tests, each one pointing towards a bad bone disease. I remember the radiologist after a bone-density scan at Princeton Hospital telling me that they didn't see any significant "hot spots" of activity. I was so relieved! At that point I didn't know that this was one of the classic diagnostic signs of multiple myeloma when factored with the results of my other tests.
This year I'm also scheduling doctor-appointments: a full physical, several x-rays, a dental exam, pulmonary function tests, etc. This time I do them in full knowledge of my condition. This is part of the work-up prior to the stem-cell harvest next month. They want to be sure I'm "healthy" (ha ha!) before they collect the cells. At my appointment at Weill-Cornell yesterday, Dr. Pearse told me to do one more cycle of Revlimid to be sure the myeloma was as depressed as possible -- that's a depression I welcome!
So somehow the weather seems appropriate today. I also look outside and can project into the the past, the future. I know the feeling of a spring wind as it will come, I can imagine the sounds of summer filtering through the windows that will be open. I know these things because I've been here before, and the promise of winter is that the seasons will again recur. I can enjoy the interior retreat into a snug and comfortable mellowness, even if it is only a temporary rest from life, changing. Freeze this moment in the flow again. Hey, the sun is coming out! I'm not kidding!
The first happened about a little over a week ago. I was driving to the Princeton Hospital to have a pulmonary function assessment done. This was part of the series of tests and check-ups that I need prior to the stem-cell harvest next month. If you enter Princeton Borough from the Princeton-Hightstown Road (Washington Road) approach, you travel through about a quarter-mile "alleyway" of trees. It's a very nice entrance, very appropriate for the bucolic place that Princeton pretends to be.
I've driven that drive many times, and the slanting December light put me right back into graduate school. Then it hit me: that was twenty-five years ago. Then it hit me again: last year at almost this exact same time I was also going to Princeton Hospital, but for a bone-density scan, hoping I didn't have some horrible disease. The clash of the memories, the feeling of potential colliding with the feeling of dread, what an odd mixture of emotion.
The second driving story was the trip returning from a wonderful family/holiday gathering at my sister's house this past weekend. They had about 15 inches of snow on the ground, and a cold, icy snow was falling when we left. There seems to be about a 10-degree temperature difference between Western Massachusetts and our home here in New Jersey, and the four hour trip was like a tour through seasonal time. What started as winter gradually became a February slush in New York, and slowly morphed into a windy and brisk late-March rain when we arrived home. It even smelled like spring somehow. The trip through time, the interpolation of winter-through-spring-shift memories from my past and the projection of them into the near future -- where will I be this coming spring? Where was I last spring?
This interposition of memory and the role it plays in determining who we are and how we try to map the future, it's an awareness of time that gets more acute for me as, well, as time passes. This blog is an explicit tracing of (now) year-old memories for me. More and more I see my music functioning as a catalog of past states of being, a record of the kinds of feelings I had when I was different than I am now. What a selfish and solipsistic thing! I'm sure not going to give it up, though.
Today is certainly suffused with remembrance. My daughter turned 21; born December 20, 1986. She's out celebrating with her friends. Happy birthday, Lian!
Part of the promise of Christmas, the promise at the core of most of our major religions, is that it really doesn't matter. Or if it does, it matters in some bizarre judgement trial acting as a gateway to the end of your time.
You know what, though? It does matter. What we do, how we live, the precious eternity in each moment (hey, a "precious" platitude!) -- this is what there is. I was able to experience that daily focus when I first learned of my disease. I read my entry a year ago, that "clarity", that "rearrangement of priorities." Then came the drugs and it got even weirder. Now I wonder, is my existence of any consequence? That's the illegal question, because the consequence is the fact of existence. The memory-games I play, they're an attempt to step out of time and see the slices, those precious eternities, the flux and flow of living temporarily suspended so that the idea of 'consequence' just melts away. It was there all the time. Does that make any sense?
Probably not, and I'm not sure it does to me now, and it most certainly won't tomorrow. But it sure is fun to write down! I feel like a reflective guy! After all, this is the 365-day turnaround, so I'm empowered by temporal tradition to 'take stock' a little.
And that's enough, I think. I'm indulging in my little private
Christmas Eve ritual: Jill and the kids are in bed -- oh, it is
ten years ago so easily! -- and I'm upstairs listening to a CD I
purchased of a group I heard in Greece years ago. It's a choir of Greek
Orthodox monks singing Hymns of Christmas Eve, ancient a
cappella music from the Byzantine period.
is an example. I just finished arranging the gifts under the tree, and
I'm sipping a tiny glass of Amaretto. I sit back and look at the
decorated tree, and I don't think "What a year! What a year!"
I think (and to be honest 'think' isn't the right word) "What a
moment! What a moment!" This can last forever.
upstairs and downstairs
I've spent a lot of today sending and answering e-mails to friends, close and far. More to do, always. I also wanted to post some end-of-year family humor, but that will come tomorrow. Right now I think I'll just enjoy sitting and relaxing a bit.
2007. 2008. One year, two years, five, ten... The numbers we use to measure our lives. Do they count? What does? There sure still is a lot to say, I think. I hope.