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8/8/2009 -- next page  

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1/3/2009

We're now several days into 2009 and I've been thinking about change. It occurs to me that for the past year change has seemed relatively gradual, something manageable, a gentle gradient of difference. Perhaps it is this apparently slow shifting that saps the urgency of existence, the subtle kind of change that doesn't yield immanent visions of life on fire. The change is still there, though, like water, like wind, a gradual erosion.

And then there is the change that happens dramatically. Suddenly you find yourself in a new land. Your sense of 'being' has altered forever. I started this blog based on that kind of change. It still happens. It happened just recently, this time hitting Jill much harder than me, but deeply affecting all of us in our family. Early in the morning yesterday Jill's dad, Roy Lipoti, died. He was 89-1/2 years old.

He was such a great guy! I can't even begin to capture in words the miracle of his pleasant personality. There are some people you meet and you think: "doggone, there is a person who really enjoys life!" Roy was like that. I can't point to any precise thing that he liked or any particular activity that cranked up his life-joy. He loved it all. He truly delighted in the simple fact of being here. Here is a picture my mom found of Jill together with her mom and her dad, and you can see in his smile what I mean:

Up until a week ago Roy was the same person I recall meeting over a quarter-century ago, hoping he wouldn't find me too terrible as a future son-in-law. A few days before Christmas he suffered a stroke, not a massive one, but it left him with a small amount of speech-slurring and a left-side paralysis (unfortunately he was left-handed). We figured that therapy would help him recover, and in fact just several days later he was showing some improvement. Then a second stroke (we think) hit, and this one caused a very fast heart-failure that ultimately led to his death. The wonderful caretakers at Medford Leas (the extended-care facility where Jill's mom and dad are/were living) had already gotten Roy to the hospital, his heart attack occurred while he was checking-in. There was no way he could have recovered.

This is the published obituary for Roy, and if you read between the lines you will find that he had a fairly amazing life:

He didn't ever try to impress you with himself, he simply enjoyed doing things. Heck, I didn't even know he had a Masters degree from Columbia. What a guy. He was just... good.

Elsewhere in this blog I think I talked about how memories can act as a shield against this constant change, but last night at dinner I saw a different side to the memory-game. Jill, Lian (fortunately she was still visiting when this all happened), Daniel and I all went out for a nice dinner, and as we sat and recalled the happy times we all had with Roy, I realized that change and memory interact profoundly to give us the gift of our life. When we die, there it is. We want to grab onto the good times and hold them in stasis forever, but we forget that the act of holding would nullify the very goodness we want to maintain. And what of the times yet to come? Make of life what you can, now, and embrace the change, the continual marvel of being. Roy did, and I sure hope we all can count ourselves as lucky as he. Here is one more photo from my mom taken a few years ago, Roy with Daniel and my two nephews (Stefan and Bo):

What an excellent person he was. We really miss him. Happy New Year, 2009.



1/31/2009

Almost an entire month has gone by and I haven't written anything here. The Big Question, I suppose, is "why"? But that question can cut several ways: why haven't I written anything here, and/or why do I feel I need to write something here?

The answer to the first question (not writing for several weeks) is a tangle of several things -- Roy's death (which I think affected me more than I suspected; I still think of him often), January melancholia (heck we haven't even had a decent snowfall again this year! Rain! Ugh! Rain!), classes starting (always more intense than I imagine it will be) compounded by prior commitments (Dave Sulzer and I have been getting some mileage out of the EEG/music project, lately on WFMU (playlist/archive here [we're on about 1/2-way through the show] and some photos here) radio and at the Cornell/Ithaca Light in Winter festival), I've been coding software like a maniac, I worry about things (many things), so much has happened this month, so much I thought of writing, and it all piled up, I'm a lazy bum, I just don't know...

That leads to the second "why" question, the motivation for placing these thoughts here. It seems such an egotistical, futile, self-serving and silly exercise. I have to remember, though, why I started this blog. When I got my cancer diagnosis two years ago, I felt really 'caught short'. There was so much I wanted to say, to do, to tell my friends and family, and the time to accomplish this had vanished. Now here I am, back in a 'normal' mode, and the urgency has dissipated. It should still be there, and I know this. I still get a thrill of fear riding over to the hospital, as I did just four days ago, for my three-week appointment with Dr. Pearse. Every three weeks! They're checking closely. Last week all was fine, but will there come a day when it isn't? I still stop by the little meditation chapel after each appointment at Weill-Cornell, and I realize how precious time is. I renew my commitment to making the most of what I have, but then it fades. I'm caught in the every-day, the mundane, the aspects of existence that simply mark the passing of time with no real resonance. Perhaps this is necessary, though, to make the luminous moments that much brighter.

And I still look out the bedroom window in the morning, the trees traced against the sky. I wonder what will happen next. I desperately want it to be good.


2/28/2009

February is gone tomorrow! Yikes! Groundhog Day was weeks ago! The furry creature did indeed see his shadow that day, we're supposed to get a sizeable snowstorm tomorrow. I feel I've resumed a normal life (and what interest is there in blogging that?), but I worry that the 'other shoe' will drop someday. So-far-so-good, though. At my last check-up with Dr. Pearse (only a few days ago), I had my Zometa infusion -- feel a little lousy right now -- and he said he wanted to cut the infusing to only once every six months. I realize I'm only two years down the myeloma trail, but this sure seems like good news. In my bleaker moments I tell myself that our health insurance company is betting against me [the drugs are so expensive!], but I have to remember that this is counter-balanced by the drug company betting with me [they want me to buy their chemicals for many years!].

Whatever. Things now come and go as they always did, perhaps with a bit of an edge that wasn't there before. Well not just "perhaps", for my awareness of life has fundamentally changed. But I do feel back in standard-operating mode. Classes are going very well, I've been going to various meetings, planning collaborative ventures, working on reports, answering insane amounts of e-mail, worrying about the Computer Music Center budget, all those faculty-like things. Sometimes when that edgy-awareness intrudes it all seems like a strange game of "pretend", but that isn't necessarily bad. The economy has made nearly everything bizarre, and maybe "pretending" is the best strategy.

And I've been doing stuff! I managed to finish up new versions of my [rtcmix~] and [chuck~] language objects, with a revised [maxlispj] on the way soon. I've been having great fun hacking some iPhone apps with a group of terrific students and colleagues at the CMC. I finished up two new pieces:

and Terry/Gregory/I cranked out a fair amount of snazzy new pieces: at the SPARK 2009 Festival. Thanks for inviting us again, spark-people!

My brother-in-law turned 50 with a GIANT surprise party organized by my sis (happy one, unca john!), my mom has a big day tomorrow, dad's latest medical checkup was good, Jill, Daniel, Lian... this is how the web of life gets woven.

Still, I sometimes look out the window and the sky is so blue, the trees are so green.



Snow.



It was like that one day a few weeks back.



3/29/2009

Almost another month gone by. Here's what is odd: I think about writing in this blog a lot. I even had one of my strange dreams about it not too long ago. I dreamed that my text here was a long musical tone, and it had become fragmented. The fragments were really intriguing, however, the sound of each was uniquely fascinating. My job in the dream was to assemble them into a coherent drone, again. A drone that was good. I don't think I finished the task in the dream (it all gets a little hazy towards the end), but the work itself was enjoyable.

I suppose that means something, and it probably would be easy to construct all kinds of sub/semi/pre-conscious explanatory tales about it. It didn't bother me much, except for a related and deeper worry that everything all will come crashing, or perhaps more properly re-crashing, down again. All my appointments lately with Dr. Pearse have been great: "good to see you! nothing new to report -- all statistics are normal! you seem to be tolerating the drugs with no problem!" How long can this last? And when it ends, will I have succeeded in saying more of what I wanted to say? Shouldn't I be writing more? Doing more?

With 'normalcy', however, comes all the other stuff. Reports to do at Columbia, events promised, classes to teach. Life becomes what it was before. We accommodate quickly to changed circumstances. And this isn't a bad thing, I don't think I can be 'wifty' forever.

I do have things to say, things to write. I just need to make the time to communicate a priority again. I still stop by the little chapel at Weill-Cornell with every visit, and I sit there and attempt to renew my commitment to getting things done. The things I want to get done. The important things. But how do I know them? I probably don't.

I have proof that I do think often of this blog. I don't know that this qualifies as something Truly Important, but we do tend to endow the cycles of nature with an eternal quality (or perhaps at least we hope as much). A week or so ago the crocuses in our yard began to bloom, harbingers of spring. I walked around with my camera, and I took some pictures for this web-log. Then of course I didn't find the time to post them. Here they are now:

     

   



4/10/2009

A terrible thing happened yesterday. Good friends, neighbors who live just a few houses down the street from us, had their 20-year-old daughter ripped from them in one of the most horrible ways imaginable. Our little community of Roosevelt was rocked in disbelief. I don't know how our friends can continue; but I hope they will. I hope we all will.

Just last week I was teaching 'Impressionism' in my music history class ("Music Hum" to those who know Columbia's core curriculum). One of my favorite example pieces to play as an example is the Pavane from Maurice Ravel's Mother Goose Suite:

It always sounds to me like the embodiment of mortality, a tune that signals how fragile life truly is. It teeters, we fall.

On my way to pick up Daniel after learning the awful news, I was playing Evening Song in the car from Philip Glass' opera about Gandhi, Satyagraha:

Sometimes his repetitious music is nothing short of annoying, but the gentle constance of this piece invoked a timeless place, a sense of continuity even in the face of a violent rupture. It helped.

Possibly one of the kindest and gentlest families I know, with a daughter who was sunshine and joy. How can these things happen? How can they?


4/13/2009

It is morning, and here we all are in a beautiful cabin just south of Mt. Rainier. A gentle mix of snow and rain falls outside, and I marvel at the good fortune that has been my life. Yesterday Cynthia Heimberg (a good friend, Jill's past co-worker in Africa) came over from Richland, WA and we hiked through ancient forests, wildlife, and around waterfalls. The day before, Lian, Daniel, Jill and I -- my "nuclear" family -- walked below the cone of Mt. St. Helens. We could see up-close the aftermath of the disaster, but at the same time the wind was in the tall pines. The smell of incipient spring was in the air.

Today in a few hours they will be holding a memorial service for Emily back in Roosevelt. Oh my friends and neighbors, my heart flies across the continent to you! I am so lucky, so very very lucky.


4/14/2009

Today is my 52nd birthday. That seems a long time, but not so long ago it seemed a very short time. Go figure. We drove up from Seattle to visit Jill's Aunt Blanche (her father's sister) in Sedro Woolley, WA. We got to meet several of her cousins, several times removed or something like that, they were really pleasant people. It's nice to discover that your relatives are actually people you like. Cousins Jeff and Dorothy took us to the local Kiwanis Salmon Bar-B-Que, what a meal to have as the salmon are running in northern Washington. It took me back to similar community events I would attend with Dad throughout his political district in Indiana. A nice memory to have on my slightly-past-half-century birthday.

Later I got to hear the traditional "Happy Birthday", and the loudest singer was Bandit, Jeff/Dorothy/Blanche's dog:

Now that was a birthday serenade! I know this sounds impossibly trite and banal, but life does go on. So far, at least.



4/17/2009

It has been a wonderful time with Lian, Daniel and Jill. I sit here on the back porch of the Inn at Barnum Point overlooking Puget Sound, the sun is out, the breeze and waves are gentle, and life is good. We've noticed the rhythm of the tides here, and the smaller tempo of the waves, the pace of life, etc. etc. etc. I start reeling platitudes, and everything I can imagine saying sounds ridiculously insipid to my mind's ear. Perhaps, though, it is through cliches that we can somehow make sense of an often random and chaotic existence. The simple repetition of things said before and actions done before gives the continuity we need in the face of overwhelming tragedy.

How do I communicate the apparently unique happiness I feel right now? Despite the timeworn descriptive aspect, it seems so special, but I hope that it isn't. I want to have this again. I want to be here with my family, Jill smiling, Lian so 'moving-forward', Daniel so thrilled (it's the eve of his 15th birthday!), again and again. I want time to stop, just for a little bit at least. So I write these words, I take lots of pictures. I'll read and look later, hoping to trace in memory what it was like to feel alive like this. And I'll imagine the sound of the wind in the tall pine trees.


4/29-5/2/2009

Memories can come strangely rushing in, sometimes. For the past several days we've had an uncanny spell of hot weather (record-setting temperatures in the 90's; this at the end of April!). The emotions associated with this kind of weather are oddly dislocated as a result. It leaves me feeling as if I'm existing in multiple planes, somehow here-and-also-elsewhere simultaneously.

This morning a breath of air through the window in my New York apartment evoked a strong memory of summertime. I was in 8th or 9th grade and taking a morning class in Spanish at Northside Jr. High school. It all seemed fun, not at all like "education". Before they opened the school each day, a group of us would play tag and other games around the building. I could smell the newly-cut grass, feel the morning dew on my feet. That was the memory the wind brought me. It was good.

I've been doing things this term, life returning to 'normal'. Here are a few on-line links I had meant to post here, but time just slips and slips away:



5/20/2009

It's one of those May nights when it is truly good to be alive. I'm sitting on our upper back porch, temperature in the mid-70's. the setting sun is bathing the green of our back yard in a warm glow. Columbia's commencement was today and I harbor the illusion that I'm temporarily 'caught up' with Things That Are Due. Jill came home and was so darned attractive. Daniel and I had a wonderful talk about epigenetics/history-of-science/philosophy at dinner. Life is good.

It's one of those nights that I wish could stretch forever. Then I realize that a stasis -- even of a perfect time such as this -- is death. Perhaps only in death can we find a changeless existence that allows for an eternal revisiting of this particular night (younger Daniel's "religion" comes to mind again). The fact of the matter is that life continues to move and flow; I've just been too lazy to write it here in the blog.

A few recent events, life going on:

There are more things that have happened, and events coming up in the near-future. Our big "Roosevelt Sound-Installation/Home" tour on May 30 is fast-approaching. And there was something today, but I'm going to write about it tomorrow. Right now I want to pretend that tonight is infinite.



5/21/2009

It is so easy to find stasis, to pretend that things don't change. They do, though, in ways we can't imagine. I've written before in this blog about the "linear nature of reality", the "unfolding linearity of existence", the apparent leaps and disjunctions that occur precisely because we trace a straight but unknown path through time.

One of our best friends, Sharlene -- her mother died this past Tuesday. As with Jill's father, you can try to make it 'fit' in your mind: they both led full and long lives (I think Sharlene's mother was 85), grown families, a reasonably happy time here. Then there are events that make no sense at all, they never will. The death of a daughter.

But what is this "sense" in any case? We all know where our time-lines are heading. How can we make "sense" of the endpoint? I think we don't, I think we can't really believe it. We can't know. Then things happen, and we can't believe them, either. We try to make "sense".

I guess right now I'm particularly aware again of this failure of imagination. Yesterday Dr. Pearse told me that my IgG levels are slightly elevated. This is one of the immunoglobulin proteins they check for evidence of myeloma activity. He emphasized the word slightly, and also reminded me that even if the cancer was active again, we have many options available. There are always options. Well, almost always.

I'm reminded that time continues to flow. Death next year, death in thirty or forty years, it will happen. I don't know if it will make any sense, or what the 'sense' would even be. I do know that there is still a lot I want to do, and I had been lapsing into a false stasis. Time to get to moving again.


8/1/2009

One of my neighbors accosted me a few days ago while I was heading over to swim some morning laps in our local swim-club pool: "why haven't you written anything in your blog lately?" The most accurate and probably least-lamest answer I can give is "I got busy doing stuff." I think this is probably a good thing.

Unfortunately, the answer to the question isn't located in a shifting of life-perspective brought on by an ultimate cure for my disease, like the possible conclusion I described shortly after I first started this blog, "...years from now I'll go back and read it and say 'My goodness! That was certainly an interesting time in my life!'" I wish such were the case. Looking at my last entry, I see that I left things a bit up-in-the-air, and the truth of the matter is that they remain so located. My IgG levels came back down ("not detectable"), but then have danced back up slightly, the real impact being that I am again on a 25 mg regimen of Revlimid. This isn't terrible, but I can feel the drug working much more than I could when taking the 10 mg dose. Not a big problem, and my main hope is that it continues working.

It has been a remarkably productive summer. It all started with an amazing event here in Roosevelt:

involving some of my closest musical friends. Life should be this way! This was followed by an intensive recording session with Darwin Grosse, part of a 'PGT+' series of recordings I plan to do with Terry Pender and Gregory Taylor: After that fun, I did a bit of hacking and managed to find a way to encapsulate the SuperCollider 3 music programming language inside the Max/MSP media-development environment: This is kind of an interesting thing, I think.

Then we were off to Evora, Portugal, for a wonderful set of PGT-performances and family (Jill + Daniel) trip:

Daniel and Jill became fairly adept Portugese-speakers, Daniel even gave a rousing toast to festival organizer-extraordinaire Jose Alberto-Ferreira and his staff at the end of our stay, entirely in Portugese! I am a proud Dad.

The last few weeks I've been having great fun porting our music-language RTcmix to run on the iPhone:

Also, shortly after returning from Portugal, Dr. Pearse was kind enough to show Daniel around his lab at Weill-Cornell: Who knows where these experiences will lead? And Daniel's just returned from 8 days of canoeing the Delaware River/hiking the Appalachian Trail, Jill's been to Washington DC a few times (as always), Lian has moved into a new apartment in Seattle, the Yeshiva controversy is heating up again in Roosevelt...

So life goes on. I do remember one of the main reasons I decided to start this blog: get these things down, things I want to tell, to remember. Even though I haven't written anything here in the past two months, I think of writing a lot. There is much to tell and remember. But I get so lazy! I even missed the 2-year anniversary of going into remission. If ever there was a time to write something Deeply Profound, July 18 should have been the day. I think I fell asleep that night watching the Jon Stewart show.

I still wake up in the morning and look out the window, though. I still get worried heading over for my 3-week appointments at the hospital (one coming up this Wednesday). More and more than ever, I think of how lucky I am, even to be here at this point after my initial diagnosis. I have a new piece I'm finishing. Tonight I sat on the back porch with Daniel and Jill, wood from storm-downed tree branches burning in our outdoor chiminea. It's all so good, I had to write this down. More later, I promise.


8/5/2009

Here I sit in the waiting room at Weill-Cornell again, waiting for my name to be called for my "blood work". This is all so familiar by now, almost mundane. The receptionists and phlebotomists all recognize me by now, all offering a friendly smile or a wave.

Even though this is all routine by now, even though I won't learn anything new from Dr. Pearse or Faiza today (it takes a few days for the lab-work to be done), I still get a nervous thrill on the ride over. I still sit in this waiting room and wonder -- like I did several years ago -- what's going to happen?

We never know what's going to happen, but this place is one where we are forced to ask that question. And I do.


8/6/2009

The checkup yesterday was fine, or about as fine as could be expected. Dr. Pearse is watching a few minorly-fluctuating blood chemistry levels. I'm showing some 'barely perceptible' evidence of possible myeloma activity. He's thinking that the Revlimid is keeping it in check, and that seems fine with me. He wants to keep me on the slightly-higher dosage (25 mg instead of the 10 I had fallen to), and that's also fine with me. I can feel the drug a bit more at 25 mg, but it's not too bad.

That's all for now. It's a rainy day.




8/8/2009 -- next page