previous months: 8/9/2010 -- 12/27/2010 

1/1/2011   1/4/2011   1/5/2011   1/11/2011   1/12/2011   1/20/2011   1/28/2011  
2/6/2011   2/20/2011   2/24/2011   3/2/2011   3/11/2011   3/12/2011   3/14/2011  
3/24/2011   3/27/2011   3/31/2011   4/3/2011   4/5/2011   4/12/2011   4/14/2011  
4/16/2011   4/17/2011   4/18/2011   4/23/2011   5/1/2011   5/11/2011   5/17/2011  
5/24/2011   6/7/2011   6/15/2011   6/18/2011   6/21/2011   6/28/2011   7/7/2011  
7/14/2011   7/24/2011   7/31/2011  
8/17/2011 -- next page  

beginning   latest entry

1/1/2011

Happy New Year!

I woke up this morning and actually felt half-way decent. For some reason, my mind and body have been drifting and floating a lot the past week. I also always seem to forget that sometimes the chemicals just make me feel sort of bad.

Now it is a new year, at least using the arbitrary metrics we adopt. They have meaning, because we say they do! Nice life-lesson in that, I suppose.

Jeez I'm rambling. Still just a little "wifty". This has been a wonderful holiday. 2011! Yikes! 1-11-11! I could not have imagined this. Extrapolate from that... 2012? 2014? 2020? Unimaginable.

Lian and Daniel are battling evil on their computers. Jill's reading, I'm taking a break from reading and computering. I like this life. I was the first one awake this morning, very unusual. I took this picture out our back window:


I was there. I saw the sun rise. The days will now start to get longer. Happy New Year, again!



1/4/2011

I had an interesting 'anthropological' experience today. After a frustrating wait for our bed-from-Godot (more about this in a future post), it's finally all here -- after a month, and four days of sitting in our new apartment awaiting the Delivery That Never Came -- EXCEPT for the side rails and the hardware (i.e. screws) to finally assemble it. That package appears to be gone. Somewhere. Not here. So no bed for now.

I've been scoping out restaurants in our apartment area. Tonight I went to a place called 181 Cabrini. The food was quite nice, I had a seared tuna with wasibi and a really tasty arugula salad. As I was eating, a bunch of people showed up and all sat around a group of tables next to me. More people came, and I offered to move over to let them use mine. One of them noticed I was reading my Kindle, and asked how I liked it. It turns out they had a vested interest, because the group that was meeting was a Book Club. They were discussing Paul Harding's book Tinker (Pulitzer prize winner this year). They invited me to join in the discussion, even though I hadn't read the book(!).

Needless to say, I didn't have much to contribute to the conversation, but it was fascinating to sit back and observe. I was in an interesting location, at the 'head' of the table group, but separated by a bit so not really an included part of the gathering. It was a perfect place to watch the interplay of personalities and the unfolding of the discussion. I was a book-club ethnographer. Kind of like going to a really strange movie (maybe My Dinner with Andre from 1981). What a New York thing! I asked a few questions now and then, and they all invited me back. Unfortunately it's on Tuesday evenings, and once classes start I'll be grad-seminaring at that time.

One of the things that struck me was the level of engagement with the book, which was clearly not a fast-read/potboiler kind of text. How does contemporary art-literature able to do this? Why aren't there "music clubs" with a similar intellectual and personal relationship with new music shared by the members? Yikes, maybe I should start one!

It also got me thinking about the situation of my own music in the world. When I returned to the apartment, I decide to take a slight detour and head up to the roof to take in the panorama. It wasn't as cold as recent nights, so I was able to hang out a little and view the world. The scale of it all! It is immense. So many people, so many lives, the scope of consciousness, existence. Where does my music fit in? It doesn't. My audience is one: me. Pretty much that makes me happy.


1/5/2011

A good way to start 2011: appointment with Dr. Pearse today, and the new drug combination appears to be working. Stats are down (and those were from my last visit), the myeloma seems to be in retreat again. Yay!

I don't know how long this will last. Hopefully for awhile. This of course means I need to continue with my current chemicals. It's going to be an interesting semester coming up.


1/11/2011

The day before yesterday I woke up and played my little "look out the window" game. For some reason, the subtle interplay of colors hit me just right, I watched for awhile as the brightness spread across the sky. It seemed... good, somehow. Here's a detail from a photo I snapped: Today, however, the sky was gray. But it was also "right". Another snowstorm (snow!) is bearing down on us, the flakes began to fall just a few hours ago.

A few random bloggish items: Dave Sulzer/Soldier and I did our happy little "brainwave" show this past Sunday at the Cornelia Street Cafe:

The show was way sold-out. Art Kaye, John Davidson and a few other friends showed up but were unable to get in. My oh my! We had very little setup time because of the crowd, and a large part of my tech-stuff didn't work properly, but all-in-all it went fairly well. I put up a web-page with links to work we've done in the past: The other random item: I wanted to write a blog entry today because I like the date 1-11-11. Here we are.



1/12/2011

Today this was the morning scene out our bedroom window (details from a photo again): Snow! Again! Like before, I watched it all lighten for awhile, marveling at the world we inhabit.

That feeling of peace and wonderment was at odds with the recent events here in our country. Probably fueled by the poisonous rhetoric that passes for "political commentary" these days, an unstable maniac shot at an Arizona Congresswoman, injuring her critically, wounding fourteen other people and killing six. Among those shot dead were a nine-year-old girl and seventy-nine-year-old grandmother.

I don't want to get into my personal 'take' on the politics of fear or the insanity of selling 30-round Glock pistols to disturbed individuals (or in general, for that matter...). I did want to post, however, a speech my father wrote back in 1999. It was published in Vital Speeches of the Day, and the message has an unfortunate relevance today:

Too bad you can't hear Dad deliver the speech. He's an incredible orator, winning the Toastmaster's International Speech Contest in the early 1960's (I vaguely remember it happening). Getting lectures from my father was not something to look forward to. But they sure were powerful!

I wish the peace I find in a simple place like our back yard could envelope the earth...

   



1/20/2011

I have a "dashboard app" that is a combined thesaurus/dictionary on my MacBook. (for those who don't know what a "dashboard" is, it's a set of small applications that you can overlay onto your screen for quick-and-dirty tasks, like looking up a word in a dictionary. I even made one myself: dlooch. It generates ambient music, as all those happy looching apps do.) Just for fun, I periodically type in a word to the thesaurus, usually it represents my hopes for the future, current state-of-mind (if good!), etc. Words like "hopes", "future" and "good", for example.

The word for this morning is "home". It really is good to be home. I've spent the last few days in Columbia-Presbyterian Hospital, where I landed after a very strange thing happened on Monday morning. Jill wrote a 'timeline' that describes it best:

As best I can construct the timeline:

You woke up and answered emails until about 8:30 when we ate breakfast.  You
ate well, took your meds, and after breakfast made yourself another espresso
while I loaded the dishwasher.  That was maybe 9 or 9:15.  I had loaded
everything, and then looked over and you had a glass of orange juice and
your cup of espresso and I asked you to finish up so I could start the
dishwasher.  You didn't respond.  

I got closer and you were "asleep" in your chair.  I said "Brad" a lot of
times, with increasing loudness.  I shook your shoulder.  Nothing.

Daniel came to see what was wrong.  You were "asleep" - chin to chest, but
sitting up on the chair.  

At some point I was able to rouse you and you said "bits of things, spinning"
and went back to sleep.

Daniel looked up Dr. Pearse's number.  I called and got an answering service.
They had the Dr. on call call me back.  Timeline - maybe 9:30 by now?

The doctor on call said to call 911.  I did.  They took the info and made
a big deal that we didn't live on Cabrini Avenue, but Cabrini Boulevard.  They
put me on with the EMT dispatch, who had me try to rouse you again, and you
opened your eyes, looked around.  But you were not awake.  

So they said you were not unconscious, but you were unresponsive.  

Yup, that's right.  

They said someone would come.  I sent Daniel to get dressed, and tell the
doorman.  I got things ready for us to go to the hospital.

Maybe 10am the EMTs came?

They talked to you - and you made little sense.  You did give your correct
social security number, but you didn't know what day it was or who was
president.  I forget who you said that time - there were so many times you
answered variously, Nixon, Reagan, Kennedy, and Lincoln.  A lot of questions
about what drugs you take, and whether you had been drinking.  They had you
drink some water - you could swallow OK.  You had trouble holding the glass.  

They tried to get you to stay awake.  

Maybe 10:30 by the time they got all the information - strapped you in the
chair and brought you to the ambulance.  Ambulance had trouble getting through
the streets with all of the double parking.

Gave you oxygen in the ambulance.  Daniel and I rode with you.

The EMT tested you to see if you had a stroke - that squeeze my hands thing
to see if you had one hand stronger than the other.  All OK.  

In the ambulance, you talked about football - the quarterback moving the
ball down the field for the first down. You were slurring.

Maybe 11am by the time we were at triage in the hospital?  They checked for
blood sugar.  

Lots more questions.  No answers that made sense.  We finally let you sleep.
You were able to obey commands, but your speech was very quiet, and we had to
get you to repeat things.  Couldn't really understand from the context.  You
told people you felt like a bag of rocks, rubbing together.  You said my age
was 74.  Etc.  

Around noonish we were at the Area D, bed 14 area.  Your blood pressure was
fine.  Over the course of the afternoon, they did a EKG, hooked you to monitors,
took blood, took x-ray, did CT, gave you IV fluids, etc.  Daniel went back to
the apartment to pack up, and he got something to eat.

I read my book. 

You only started to become more lucid around 4pm.
How bizarre! I have no recollection of any of this. I do have a vague memory of feeling like something was a big game, and I had to answer questions in an indirect or joking manner, or I would lose the game. I also have half-formed memories of things like the "bag of rocks", but they may be prompted by Jill's narrative.

The good news is that after many many tests (MRI, CAT-scan, EEG, blood-work of all kinds, X-rays, etc.) there is nothing apparently wrong with me. I was fearing a secondary cancer had formed as a brain tumor. The weird news is that they can't find anything wrong with me! All the tests were negative. Except for the fact of my multiple myeloma I have a clean bill of health.

Their best guess is that the episode was somehow triggered by my steroids. The timing is suspicious, I had taken my weekly dose about 45 minutes before I 'fell asleep'. As I have mentioned before in this blog, I'm feeling the effects of the decadron much more strongly than I did in my induction therapy use, even though the dose is much smaller. It is the potentiative effects of the biaxin that is a part of this therapy. Again, good news here: Dr. Pearse had sent over my latest measurements to the oncologist (Dr. Andrew Eisenberg) at Columbia-Presbyterian, and my myeloma stats have dropped dramatically. So at least the drugs are doing their job. In fact. Dr Eisenberg was amazed at how well I seemed to be managing the myeloma, going so far is to call me a 'poster child' for contemporary drug therapies. Sign me up for those posters.

I'm back home now, feeling about as 'normal' as I do anymore, although really tired. A hospital is no place to get actual rest. I'll repeat: It really is good to be home.


1/28/2011

It is gently snowing outside now on this grey-cold January afternoon. The flakes are floating slowly, not the cascade of white that occurred last night. We received another foot-and-a-half, on track to (already) the snowiest January in history and the snowiest month ever recorded for this part of the world. The altered world seems appropriate. Ever since the myeloma has come back and I've been on the new therapy, I've felt really, really odd. My 'self' is being stretched again. What are we that these chemicals can change us so much? I've wondered this before (here and here, for example), but is this now my "normal"?

The little episode last week seemed perhaps a turning-point. I do believe we have the cancer on-the-run again, the stats are continuing to come down. At my appointment earlier this week, Dr. Pearse and Faiza have said it's ok for me to cut back on the Biaxin (this is what makes the steroids more powerful), so I'm now only taking half the dose I was. We also discussed changing away from the Ambien I take with my weekly Decadron dose, but that probably won't happen until after my neurological consult in a month. Dr. Pearse is reluctant to make too many drastic changes that may interfere with the way things are progressing right now. I completely agree.

Life continues, then, although my existence is a vibrating/lethargic, slightly-nauseous and shifting experience. And it is snowing outside. This is winter.




2/6/2011

I haven't written much here lately because I really haven't felt like writing much here lately. We're in the throat of January-February, and the snow and cold are no longer much fun. Our precipitation the last week or so has taken the form of ice/sleet/freezing-rain; the kind that just sort of hangs in the air and permeates whatever passes through it with cold dampness.

I could have written: "Another grey day. Feel kind of depressed. Grey." Or I could have written about the hour-plus it took to chip away the ice holding my car fast to the street parking (and the nice two-foot solid ice divider thrown up by the NYC street snowplows). Or I could have written about how my body just feels weird a lot, even with the new drug-dosages. It is better than it was, but I still feel either tired or oddly 'jangly' whenever I'm awake. No repeat of the zombie-state, though. I hope this passes.

What a self-serving blog this is! Whine whine whine, complain complain complain. As I sit and try to exist, at least I've been remarkably productive. The semester is underway -- probably part of the initial overwhelmingness depression I've been feeling -- and I've also released a large batch of software for use:

Damon Holzborn, my TA this term for my graduate class, and I gave a presentation at the New York "dorkbot" meeting. The weather was really awful that night, but still we had at least a hundred people show up.

Things continue. I still feel weird. Dr. Pearse suggested that I consider changing therapies if it got too bad. I'd prefer to stick with this "BiRD" therapy for now, since it seems to be working. I'd like to see if we can put my myeloma into remission again, at least for awhile. Then time to consider alternatives. At least there are alternatives.



My dad has been having a rough time of it, too. They're withdrawing his pain medication in anticipation of back-surgery to eliminate (hopefully!) the back problems he's been having. Pain is not good, so I see this as a positive step. In the meantime, he's also feeling really low. Grey. Today it was slightly warmer than the past month, however, with just the barest hints of spring in the air. The sun was out. Grasp what we can, more snow/sleet/rain in the forecast for the coming week.



2/20/2011

No postings here for awhile, but I've been meaning to! To be sure, I started several last week and never finished. I'll finish them off and put them here now.

I meant this one to be up on 2/15/2011:


And I meant this one for 2/16/2011:
So that's that. Part of the reason I think last week was so intense is because it actually was intense. We had our grad-admissions meeting, I had my 6-month infusion of Zometa after my appointment with Roger, we had meetings with the external reviewers of the Department, blah blah blah. At least the snow has almost all melted. It was in the mid-60s on Friday. Springtime.



2/24/2011

I have another scene I remember from last week, one that I recall thinking "I should write about this, too." It was during my infusion at Weill-Cornell. The sun was streaming through the windows (rare this winter). As I lay back in the reclining chair, I plugged in my iPhone and put on some music by the Armenian musician Djivan Garparyan. I was drifting in and out of consciousness, and this piece came through my headphones: I looked up, the sun mixed with the fluorescent lights in the ceiling, and in this case my body and my mind fused... well, not really fused, more like dissolved. I was adrift, I felt nearly non-existent; but it was a dissolution rooted in a strong sense of "being", somehow. Does this even make sense?

I looked up with my eyes barely open, and I saw the IV drip, the clear plastic tube down into my arm. There was a bag with very expensive drugs in it, and it had my name on it. That's where I was, then. I wish I knew the words that Gasparyan was singing.




3/2/2011

One of the hidden benefits for me about keeping this blog is the reminder of how life can be. Because I've now reduced my drug load, I'm not feeling as down-and-out bad as I was, but I'm still just dr-i-i-i-fting along. It seems that everything is happening at a distance, the air is somehow thicker and light travels more slowly. Some of this may be incipient 'spring fever' as we've actually enjoyed a few semi-warm (up into the mid-50's) days lately. After the intense winter we've had it is almost a dramatic environmental shift.

But back to the blog, I had forgotten how long these chemo-feelings can last. My initial chemical roller-coaster went on for months and months. Reading through my early entries, I can remember a time like now, and the good news is that I know there will be an endpoint. Of course it may be a very different endpoint than previously, but we tend to think that life will continue as it is, that it will unfold in a predictable way from our present circumstances. This is not true!

In addition to the bodily awareness of my myeloma-situation forced upon me by the drugs, I've also been thinking about cancer a lot lately because I'm reading a remarkable book: The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. Dr. Mukherjee is an oncologist at Columbia/Presbyterian (hey! I know that place!), and his book is part history, part critique, part information about contemporary therapies, and a lot of compassion. It was one of those books that was recommended to me, but -- probably because of the title -- I really didn't want to pick up and read all that badly. I'm glad I did, it's absolutely fascinating.

Plus the feeling of the drugs, the drugs. Here I am, wifting away again. I'm heading over to Weill-Cornell shortly for my treatment with Pentamadine to prevent a rare pneumonia. Then home to relax, read, work on a new piece, Damon Holzborn and I are finishing up the iRTcmix software for release, life.

My dad's back surgery last week looks like it is a tremendous success! Lian was able to visit mom and dad last weekend; she was helping to recruit for Amazon at a 'job fair' at Purdue University. Mom's birthday yesterday, HAPPY ONE mom!


3/11/2011

Oh my, Japan! Massive earthquake, but fortunately it seems all our friends (and their families) are ok. Don't ever underestimate the fundamental randomness of life.


3/12/2011

This morning the cat was meowing outside our bedroom window at about 5:30 AM. While trudging to the back door to let it in, I noticed that one of Allan and Robin's (our next-door neighbors) lights were on, warm and yellow against the blue/grey predawn light. It looked so comforting, but at the same time the early hour suggested something going on. Or they forgot to turn it off the night before. In any case, I stopped to wonder about Allan and Robin's lives, and extrapolating outwards from them -- like a slow lift-off from earth -- to the multiplicity of lives in our town, our state, our planet; the hopes and fears everyone has, the dreams, the personal histories, the plans and reasons for being awake at 5:30 AM on a Saturday morning. My mind cannot contain this.

Here is something I meant to post here about a week or so ago. It's from that book I finished earlier in the month by Siddhartha Mukherjee, The Emperor of All Maladies. Towards the end of the book, he writes about multiple myeloma:

My own hopes and dreams.

Now imagine waking at 5:30 AM, the light again a pearly predawn blue/grey. Today you awake in Japan, however. The world has changed. The earth has literally shifted beneath your feet, and the aftershocks keep coming. News reports describe the Japanese populace as "numb and shell-shocked". The photos appearing on web sites seem to get worse and worse. Just as my mind can't contain the mass of individual lives, I cannot imagine the scale of devastation that is being shown.

Thank goodness none of our friends (that we know of) in Japan were injured! Sadly there are too many other people who can't say this.

Springtime does come, despite cancer, despite earthquakes, despite personal or public pain. Our crocuses opened today for the first time this year. Here are some flowers for Akira, Christianne, Johannes, Johnathan, Cathy, Yuriko, Myuki, Hiroya, Naotoshi, families, friends, so many others:


     



3/14/2011

Some personal news to report:

At my appointment with Dr. Pearse last week, it seems that my stats are still going down/holding steady. Roger said he'd like to get me completely off the steroids (yay!), because he isn't a fan of long-term steroid use at all. He said he'd like to drive me into remission again. To do this, he wants to start adding Thalidomide to my drug regimen. Thalidomide is the drug from which Revlimid was derived, and it is also at the center of one of the worst pharmacy industry disasters in modern times. We even studied it in Pharmacy school as an object lesson of what badness can happen. Interestingly, it was its mutagenic properties that led to its investigation into use as a drug against diseases like multiple myeloma. It has been remarkably effective battling myeloma, too. Hey, Revlimid has certainly worked for me!

Dr. Pearse believes that adding Thalidomide to my therapy may lead to the complete remission, especially given the way I have responded to Revlimid + Decadron. They (the team at Weill-Cornell) have been exploring this combination of drugs -- they call it "T-Bird" (Thalidomide/Biaxin/Revilimid/Decadron) after the "BiRD" (Biaxin/Revilimid/Decadron) protocol I have been using. Those fun names!

The only thing he warned me about had to do with the fact that Thalidomide was originally used as a sleeping pill. He said "try it out on a Friday night when you don't have much planned to do Saturday, see how it goes...". Hmmm. Then he looked at me pointedly and said "Some of my patients have reported that it makes them feel more stupid." Yikes! Maybe it will bring out my inner 'Michelle Bachman'! My sense of this is that it will add to my 'wiftiness'; I can handle that. More long, droney ambient music from me in the future I guess.

Speaking of music from me, I finished a new piece last Friday. It's not at all droney or ambient:




3/24/2011

Sometimes I'm just not very happy with myself. Yesterday, at long last, I finally answered e-mails from my friend Dave Sulzer. I've owed Dave some information for at least a month, and I kept putting it off, putting it off. In fact, there are many people I have "let slide" to whom I need to respond. What an idiot I am! Why can't I be a better person?

Although I don't ever want to use my disease as an excuse, I have commented before (here and more recently here) that my memory had glossed-over, or selectively forgotten, how much being back on battle-the-myeloma chemotherapy can knock me down. Or maybe it's even the myeloma itself trying to commandeer my immune system. Whatever it is, I get really tired. There is so much I want to do, though; so much I need to do! Yesterday, for example, was an excellent day. Interesting discussions with students, some decent work on our new software, worked on a new piece, nice presentation in one of our grad seminars, but by the end of the day I was totally wiped out. Today I'm working from home, and my brain is filled with sand. Heck, there was even a wet snow falling when I woke this morning. It's grey outside. I'm depleted inside. I'm whining. Sheesh. Snap out of it, Brad! Be better! Now!


3/27/2011

I'm now in my second week adding Thalidomide to my anti-myeloma chemo-cocktail. It definitely feels a little heavier than the Revlimid, which is derived from Thalidomide. I'm feeling some peripheral neuropathy, numbness in my toes mainly, and I'm feeling more 'wifty' than before. I don't think it's as intense as my induction therapy, though, probably because my steroid dose is much lower. But I'm still getting pretty tired and "floaty" throughout the day.

There is a paradoxical set of perceptions I'm experiencing. My 'wiftiness' tends to make the world seem distant, drifting along with a slight disconnect from my consciousness. However, certain events seem larger-than-life. Unexpected sounds or surprising occurrences are big and loud. It reminds me of times when waking up from a dream and the external sounds seem greatly magnified. So my mind floats slowly through the day, with BIG SURPRISES every once in awhile that almost literally cause me to jump.

Riding as a passenger in a car is a real adventure.


3/31/2011

I am very tired. Our good friend (and my former student, one of the first!) Mara Helmuth was out visiting this week. It was terrific to see her, but my oh my I'm feeling drained now. The rhythm of the week and the drugs.

Good news, however. I had my three-week checkup with Dr. Pearse yesterday, and my myeloma stats continue to come down. If the results of the blood-work come back this week showing that the cancer is still down, I get to stop the steroids! yay! I will still be taking the Revimid and now Thalidomide, so I'll just be 'wifty' without being so crazy. I guess. Right now I'm very tired.


4/3/2011

Mara took this photo (hand held/flipped iPhone camera) up on the roof of our apartment-building while she was here last week: and she also took one of me inside the apartment: Kind of egotistical to post that one, I guess, but I like it for some reason.

I look at it, and I wonder what I'm doing with my life. I've been so wrapped up in the big mortality play that I feel I'm losing site of some bigger picture, some activity that I could be doing to make a difference. The drugs cause me to focus inward, and not always in a good zen-like way. More like a selfish "oh me/oh my" way.

I was already thinking along these lines last week -- Mara's on her way to Uganda, Jill's dealing with some difficult environmental and radiation issues, my students and colleagues at Columbia are doing great work. Then Jill, Daniel and I went to this amazing dance performance last night at one of the mainstays of avant-garde theater in New York, La MaMa E.T.C.. Jill and I used to go there fairly often when we were younger, and she noticed an intriguing dance performance was being presented: Fall and Recover. Most of the choreography was done by the dancers in the piece, survivors of torture who had sought political asylum in Ireland. I wasn't sure what to expect. Maybe all these refugees from Uganda, Iran, Nigeria, Cameroon had developed a strong affinity for Irish clogging? Not hardly. What we saw was a really stunning performance, original in a way not "original" for contemporary dance (all dancers were obviously amateurs, they don't teach modern dance techniques in third-world prisons), but original in how movement, group-movement especially, intersected with understated but profoundly powerful human stories. It wasn't an overtly political exhibition. Instead it was really moving.

I could go into nitty-gritty details of the work, how the African communal folks songs they used (why do they always sound so happy?) wove around a disconnect in movement, how the multiplicity of different languages used created an impression of commonality and thus horror at the fact of torture, how the lone musician Rossa O Snodaigh used simple delay techniques to build a remarkable sound world. But I won't (ha ha!). If you get a chance to see these people, you should. Stay for the discussion afterwards, too.

I found a video digest of the piece on the web:

Of course it doesn't do justice to the live performance, but still. I see this and I think: what have I been doing lately? Whining about my drugs, wondering at life. I have things I want to do, I need to do them. I'm such a lazy bum sometimes.

This morning Jill and Daniel and I walked down to the "Little Red Lighthouse" underneath the George Washington Bridge. The Lighthouse was the subject of a well-known children's story (no links here, look it up!). I took a few pictures just for fun:

It was a beautiful day. Think about life. What to do. Maybe this is it.



4/5/2011

A follow-up to my previous post. This one will start with some self-serving prose and then a bit of whiney-ness, but I hope to end on a more positive note. Or at least positive in the sense of giving me a little self-justification for existing.

Despite my assertions above, I am doing things. In fact, tomorrow I'm heading down to Virginia Tech University for several concerts featuring some of my music and lectures about my work set up by Ico Bukvic, good friend and former student of Mara Helmuth's. It's a part of a spring festival he does in Blacksburg VA, the main link is here and a Facebook page about it here. I've also gotten confirmation from friend and collaborator Luis Jure that I'm to be one of the keynote speakers for the 2011 Latin American Audio Engineering Society Conference to be held in Montevideo, Uruguay this coming August.

Good things to do, but here's what I wish I could do:

I am looking into a few sources of funding (there's a Fulbright program, for example) that may help with my on-going collaboration with Luis, but I don't know that I have the clout to move these things. As far as the "inspiring music" aspect at VA Tech, I've more-or-less reconciled myself to the fact that my music really doesn't fit that kind of mold. I don't think I can name any student who has come to Columbia to really study composition with me based on what they've heard of my music. Sometimes this makes me sad. Most of our students do wind up hitting me up for computer-music expertise, but there are certainly people who can do that much better than I. How did I get here? A part of the 'study composition' thing is that my view of composition is radically different than that of the crowd I tend to hang around these days. I realize that the word "radically" is overused and too strong in this context, but I do feel that how I approach music-making is really different than my colleagues and our students. Yeah, just a little isolating at times.

Enough wallowing in self-pity! To turn things around, I've encountered a few examples of how things can work that slide under the greatness-inspiring model that is prevalent in our contemporary market-driven culture. Oh yeah, just a touch of self-rationalization here! The first came from a book I'm currently reading by essayist and author Mark Slouka, titled Essays from the Nick of Time. In one of the essays, Slouka writes about our sonic environment and the lack of any sense of 'silence' in the world we inhabit, especially the data-driven cell-phone, iPod, commercial-push audio activity that surrounds us. Partway through, though, he describes how he has never really encountered "perfect silence" and has this brief aside:

In a review of the recently (and sadly posthumously) published book The Pale King by David Foster Wallace, Michio Kakutani in the New York Times quotes this description of scenes in the Midwest: Both Slouka and Wallace are well-known and respected authors, but these isolated moments of prose struck me in a way that had little to do with their stature in the world. The Wallace book isn't even published yet. Instead, reading these detached lines, they somehow resonated with me, filling me with a sense of remembrance and connection to the state of being alive, seeing these things, experiencing these things. I know them, I know what they are like. There are others outside myself who have had these feelings. They have also occupied these physical and figurative places.

Perhaps someone will run across my music in this way and find a small spark of intersection that will reverberate with their own lived experience. A human connection across time or space. If that happens, then a small amount of meaning might be invested in my musical efforts. I hope so. Isn't that about the best we can achieve?

Anyhow, enough self-this and self-that for now. Yikes, maybe this is a symptom of my new drug regimen. I doubt I'm much fun to live with in this state! Time to get back to work, I have some lectures and concerts to get set.


4/12/2011

The arrival of spring is kind of like a minor slow torture this year. I was down at Virginia Tech University over this past weekend and got a really nice taste of what warmer weather and flowering trees are like. There was rain and a bit of coolness for two days, but the first and last day of my trip it was glorious. I put up a web page with an improv piece I did on the main concert here: The visit was great, good people, good times.

Upon returning we had an insanely warm day yesterday. I think we even set a record -- I checked the temperature report in mid-afternoon and it was about 87 degrees F! Spring, summer, they are becoming more tangible. The vagaries of the weather are also reflected in my myeloma. I was looking forward to dropping the steroids from my drug regimen, but the lab results from my last visit came back just slightly elevated instead of the nice slow decline or plateau. So I continue to take my decadron. Oh my brain, oh my body. Keep working, drugs!


4/14/2011



Today I am 54 years old. It was a nice day here.



4/16/2011

[note: I wrote the entries for the next three days (4/16-4/18) while in San Francisco, but I didn't post them at the time because of the exorbitant internet-access fee charged by our hotel.]


We're out in San Francisco for a few days. There are many friends and colleagues here I probably should have contacted, but this trip is mainly for Daniel. He's interested in looking at Stanford as a potential college choice, plus we've also arranged a tour at UC-Berkeley (although the current financial problems in the UC system are somewhat daunting). It's also a family-trip for us, as Lian has flown down from Seattle to join the fun. I get really jealous of family-time anymore.

My one nod to being a decent faculty member is that I have arranged to meet a good friend of our VP for Planning at Columbia. Her friend happens to be highly-placed in the audio group at Pixar, and my hope is that we can build a strong relationship with them in conjunction with the new sound/arts program we're establishing at Columbia. Pixar is fun! I'm really looking forward to seeing the place, and who knows? Some good may come of all this.

I've always found San Francisco to be kind of scary city, though, and this is coming from a now-jaded New Yorker. This visit was no different, and in fact things seem to be a little worse. The downturn in the economy seems much more apparent here. All the stories we have heard back east about how bad things are in California seem true. Today we went down to the Fisherman's Wharf area. It was a nice day, and although there were a goodly number of San Franciscans and tourists like us about, the place seemed much less vibrant than it had in our past visits. Noticeable vacancies and boarded-up storefronts were around. Even in the famed Ghirardelli Square we saw three separate stores completely gone, leaving only empty shells. We went to a crepe restaurant that was one of Lian's favorites when she visits here to find a notice posted that it was closing "due to the bad economy" in the next week. An excellent sushi place recommended by my friend Gregory Taylor had closed. It was really depressing. It takes a lot to wreck a thriving place like this once was. Thanks, Dubya!

Probably the scariest thing (for me) was the homeless problem. I saw a vision of what New York might become again if we can't turn our economy around, and if we continue to move along the track of increasing wealth disparity. San Francisco has always seemed very much enamored of material gain, or at least the blatant display of such gain. Odd given the counter-cultural past of the city. But in any case, the flip side of the coin is that the panhandlers are very aggressive here, in a way that just doesn't happen back east. To me this is sad, and I've often wondered how to address the underlying problem that creates the context for this social scene. This time the most dismaying thing was how many homeless there were. Virtually every street corner, both in the "touristy" areas and elsewhere, had at least one sorry individual demanding money as we walked by.

I'm afraid that the current maniacal tea-party-dominated budget zeitgeist in Congress will compound this problem. I ask myself: what would I suggest to solve this human tragedy? I don't know, but cutting essential services, de-funding research necessary to find new solutions to our social ills, and increasing the differences between the haves and have-nots obviously all seem completely misguided. I can catch a wretched glimpse of a possible future here, and I am appalled at what we have allowed to happen.


4/17/2011

Wow, I didn't mean for the last post to reflect the general tenor of our trip her! To be honest, it's been really great. Despite closed restaurants and aggressive human wrecks, we've been having a terrific time. Today we spent a delightful day at Golden Gate park. Initially we had planned to wander through the California Academy of Sciences at the park, but the entry fee was $30/person! Yikes! I guess another sign of our enlightened budgetary and support priorities these days...

Instead we wandered across the park to the de Young Art Museum. Entry was only $10/person, and the visit was a truly wonderful surprise. Because it was our first visit to the museum, we elected not to go to any of the special exhibitions (additional $$$, too) and instead wandered through their permanent collection on display. I was impressed by the curating -- some of the pieces were truly unique, especially in the African and Papua/New Guinea sections. I always suffer from a bit of "colonial vertigo" when I encounter museum displays of functional and culturally-meaningful objects from non-western societies, but the de Young collection was interesting in that they placed works by contemporary artists from these same societies along with the traditional pieces being shown. It was a kind of globalization rooted properly, somehow. Or maybe I'm just kidding myself to justify my cultural/imperialistic voyeurism.

There were three works on display, contemporary works, that weren't subject to my knee-jerk political correctness, because these were western artworks intended for display. All three were deeply moving.

The first was a piece by the artist Cornelia Parker. It was titled Anti-Mass, and upon walking into the gallery the work appeared simply as an abstract suspension of black pieces of wood in a roughly cubical shape:

Kind of a nice sculpture, the three-dimensional filling of the space was interesting, but not really compelling. Then we read the text on the plaque describing the sculpture. I figured it would be some silly post-post-structuralist rhetoric about negative form creating a sense of weightless isolation or similar nonsense. No, instead it was a direct description of where the black -- upon closer examination, charred -- pieces of wood used in the sculpture came from: they were pieces from one of the African American Baptist Churches blown up by Ku Klux Klan extremists in the 1990's.

"Anti-Mass" indeed. What a powerful statement! The knowledge of this work completely changed my relation to it, how it affected me, what it meant. Yeah, I'll be using this as an example in my classes.

The next piece that really grabbed me was in the same gallery. From a distance, it seemed a remarkable model of a gothic cathedral:

It was constructed by the artist Al Farrow, and the full title of the work is Religious Trifecta: A Synagogue, a Cathedral, and a Mosque. The "oh...!" moment like the one accompanying the reading of the plaque for Anti-Mass came when you got close enough to the model to see how it was made. The entire work was built from shell casings, shot pellets, and sawed-off gun barrels. I don't think I even need to describe that particular moment of realization.

The final piece was a surprise. We can't escape Roosevelt! In one of the last galleries of contemporary art we visited hung a really interesting work by (former Rooseveltian) Ben Shahn. It was very different from a lot of the 'poster art' for which he is best known. This one was done using tempura, very colorful and detailed in a way his poster-pieces aren't. It depicted a very pathetic parade, some drooping American flags, and in a window of one of the buildings overlooking the parade route sat an obviously sad and disconnected young boy. I forgot the title of the work, but the date of realization says it: 1945. Perhaps war can be "just", perhaps war can be fought for the best humanitarian intentions (Shahn took his Jewish heritage seriously), but war is just terrible. There is no "winning" here. What is there to celebrate?

After the museum visit we found some peace in the famous Japanese Tea Garden:

Jill and I went back to the hotel while Lian and Daniel ran 11 miles around the park: Oh our kids! Later at dinner we had an engaging discussion about the purpose of art. This was my kind of day.



4/18/2011

Today is Daniel's birthday! 17 years! Here he is, now on a college tour contemplating how his adult life might unfold. Lian now supervises five software engineers at Amazon (not sure if I can write here what they are developing). I am so proud of what they can do, what they are doing. I don't know what I did to deserve this, the best part of life. There was a great quote in an article by David Rakoff in the New York Times magazine this past weekend, something like: Watching Lian and Daniel grow, knowing the deep love I feel towards Jill... I may have a dread cancer but I feel profoundly lucky AND fortunate.


4/23/2011

A few random items: I owe some e-mails and phone calls to a number of friends. I feel pretty lousy right now, a combination of the continued chemotherapy and an incipient spring cold, I'm afraid. I feel so weird from the drugs I can't even say how or where I feel lousy, just that I do. I have an appointment scheduled with Dr. Pearse this week, so hopefully it will yield some good news.


5/1/2011

What a week this past has been. Picking up from the "I feel pretty lousy right now" of my above post, I pretty much fell off the end of things for nearly all of last week. I'm still feeling really weird right now, but the fact that I can even sit here to type this blog is a vast improvement. I still have upper-respiratory stuff going on (cough, congestion), but it's somewhat better AND my mind is a little less fogged today than the past several days.

When my head-cold hadn't improved over last weekend, I was worried about the possibility of pneumonia, especially given that I was several weeks overdue with my pentamadine-inhalation. Monday I made an appointment to see my primary-care physician, Dr. Richter, and he had me do a chest x-ray. No pneumonia, just a good old chest-cold.

I went back home to rest and try to recover. Over the next few days everything just got really strange. Tuesday I drove up to Columbia for my grad seminar. Fortunately Damon was set to do the class, because I was really feeling disconnected. My cough and congestion had slightly deteriorated, but my ability to think had almost vanished. Perhaps it was because of the over-the-counter medication I was taking (nyquil- and dayquil-like cough/cold pills), but I felt like I was moving through molasses. I had to break every task down into constituent steps. I wanted a glass of milk: 1. walk into the kitchen. 2. try to remember why I was in the kitchen. 3. Open refrigerator door. 4. Identify milk container... etc. I had taken my dose of steroids on Monday, and this along with the Revlimid/Thalidomide may have muddled my thought-processes. More to come on this, though.

Fortunately I had my regularly-scheduled visit with Dr. Pearse on Wednesday morning. I managed to get through Tuesday -- thanks Damon! -- and met with him and Faiza at Weill-Cornell. My myeloma stats were still low, but they hadn't really decreased much more. Dr. Pearse said that he didn't believe we were really getting additional effects from the steroids, and he really doesn't like the long-term use of decadron. I didn't argue! He said to stop all my drugs for now until I get over my cold. When I recover, he wants me to try Velcade with Revilimid. Velcade isn't really a 'new' drug, but I haven't used it yet. It will require a once-a-week injection that can be done in Princeton, so once I'm back to "normal" I'll get things set up.

In the meantime, I had scheduled my pentamadine inhalation for Friday morning, and somehow I muddled through the rest of Wednesday and Thursday and got back to Weill-Cornell Friday morning. I was feeling so low that I had to cancel a performance-event we had set up with the Lower Manhattan Cultural Council (an event called "Sound Off" -- Luke DuBois had helped to organize it). Damon and Daniel Iglesia were the CMC-reps instead. I felt sorry letting people down, but the fact of the matter is that by Thursday night I was really feeling miserable.

I got home and have been vegetating ever since. The bizarre thing about all this is my miserable-ness isn't from a physical badness; I don't even have a fever to speak of. Instead it is like something has disconnected my brain. I would login to try to answer e-mails during the past week and it was almost as though the words made no sense. I could barely call my parents and sister to say "hello". I would drift in and out of sleep, but it didn't seem to make any real cognitive difference. The world around me was going, going, and I couldn't move. Sometimes this would make me depressed, but that required some ability to think about why I should be sad. Nothing seemed to matter. Jeez, I was just pathetic.

Still am, but I think I'm coming out of it a little now. Jill thinks that maybe it was the combo of drugs AND then no-drugs PLUS the inhalation therapy PLUS the cold-medication. Whatever it was, I feel like the last week has been almost completely lost. The past two days have been beautiful outside, or so it seems. I need to recover now so I can be a living person again. For awhile, at least.



Here's something good from today, though:
Lian ran a half-marathon in Vancouver! What a Lian!


5/11/2011

Yesterday and today I'm feeling almost back to normal. Still a lingering cough, though. Grump grump grump!

The past few days have been absolutely gorgeous. Stark blue skies, sunshine. I went to visit Terry Pender today, he now lives about an hour north of New York. Terry had his hip replaced a few weeks back. His recovery appears to be going very well.

On the way back, I came around a corner close to home, and the sun slanted from behind in a way that made everything a luminous yellow. And there was a smell coming in through the windows as I drove, a combination wood-smoke-like and earthy spring. I was listening to some slow slide-guitar music by Ken Ramm (his band Euphoria). It all seemed hyper-real for just an instant. Too few of these moments anymore. I miss them. But I don't miss the drugs.


5/17/2011

I haven't written much here lately. The recovery from that stupid head-cold really took awhile. Even now I still have a very slight cough and some congestion. However, I feel much, much better. Partly this is because I'm off nearly all the drugs that have accompanied me through the spring semester. Dr. Pearse told me to stop all of them until I got over my cold, and then only resume with the Revlimid. No steroids! Although my stats are indeed quite low -- so low I don't even qualify for a clinical trial of a new drug, Pomalidomide (I'm not sick enough!) -- Dr. Pearse would like to see me go into complete remission again. He thinks that the steroids and Revlimid have worked about as much as they will work for now.

Soon, then, I will start on Velcade, another effective anti-myeloma drug. In many cases Velcade is the 'induction therapy' used. Typically it is given with a short infusion, but Dr. Pearse would like me to try a new method of administration, a subcutaneous injection. These have to be done once a week, so I've made arrangements to have it done in Princeton at Dr. Yi's office. Dr. Yi was the first oncologist I saw after getting my myeloma diagnosis. He was also the one who recommended that I go to Weill-Cornell for treatment. He's a good guy!

Right now we're awaiting approval from my insurance company for the sub-Q approach. It's nicer because it is a single injection instead of an infusion through an IV, and it apparently has reduced side-effects. I would think the insurance company would approve, because it's also cheaper. We'll see.

Part of why I haven't written here is that I have once again fallen into the trap of thinking I should be writing Deep Thoughts. I haven't had any lately, and probably when I think I do have them they are silly. I figured I should just start writing things down again.


5/24/2011

No "deep thoughts" to relate now, although I did spend some time up on the roof of our apartment building looking over Manhattan, the Palisades. I found out from the building architect that this is the highest point on Manhattan Island.

I do have some fun music to link here, though. Last Saturday night was my Roosevelt Arts Project presentation for the year. I use it as a chance to get the CMC staff down for a nice dinner, enjoyable sound-making. Here it is:

The web page explains what we did. What an amazing job I have! What terrific people I get to work with!



6/7/2011

Life and death. Here I am, sitting in Dr. Yi's office, waiting to start my new chemo regimen of Velcade. Dr. Pearse wants to try it along with the Revlimid. The good news is that I've been off the Decadron and the Thalidomide for over a month now. My last check-up with Dr. Pearse still had good and stable stats, so with luck the addition of Velcade may put me back into remission again. Our insurance company did approve the administration of Velcade with a subcutaneous injection. Supposedly the side-effects are much less pronounced. Plus I don't have to sit for an infusion every week.

But I started this post with "life and death" because of events this past weekend. Friday we travelled to my sister's house in Longmeadow, MA to celebrate the high-school graduation of Stefan, my oldest nephew (photos on-line here). The dinner and following party for family and friends were spectacular -- Uncle John and (sister) Auntie Brenda never do things half-way! So much great food, and a very talented live band to promote the festivities. And my nephew Stefan, all set for college. All of the "cousins" -- Lian, Daniel, Stefan and younger brother Bo, and also JT, Katrina and Erika from John's side of their family -- they were young adults now. Erika has three lovely children, JT is a tennis pro, Lian and Daniel, oh my.

We returned on Saturday, and Sunday I attended a memorial concert for Milton Babbitt. Milton was one of my professors at Princeton. I was fortunate that his last two years before his retirement were my first two years of graduate school. I didn't really buy the view of music that Milton was selling (Paul Lansky and Jim Randall were my primary mentors at Princeton), but he was a fascinating and provocative teacher nonetheless. He died last January.

As we age, memory really does serve to telescope time. This process was unimaginable to me when younger. It has to be experienced. In my mind, the cousins are all still in elementary school, and they're preparing one of the little 'shows' they loved to put on for us at family gatherings. In my mind, I can still hear Milton's voice and see him walking up the stairs in the old Woolworth building on Princeton's campus. In my mind, my first visit here to Dr. Yi's office was just a few weeks ago. I still recall Dr. Yi saying on that late-December afternoon: "you a young guy -- live long time!" I wonder how long is long. For all of us.

Listening to one of Milton's pieces at the concert, his More Melismata (for solo cello), I worked to parse the dense musical materials, noticing particular notes that rose above the musical texture. I assume that Milton designed his music to draw attention to these specific pitch-classes; at least that's the way I can best follow how his music unfolds. After awhile I lost my musical focus and thought back upon the earlier weekend events. Why such a big party? Why bring all the family from far and wide? We stage these events to mark the occurrences in our lives, like the 'important' notes in Milton's music. We do these things to highlight the good times, the things we want to remember. In our ever-telescoping memories, they will hopefully rise above the texture of daily living and remind us of the best we can be.

I wonder if we can design our lives like music. Beyond the obvious family/personal and professional milestones, what would I point to in my life as "the best I can be"? I'm not sure.



Later today, the Velcade hasn't been too bad. Dr. Yi gave me a prescription for an anti-nausea medication, "just in case", but so far I haven't had any need for it. The other potential side-effects probably won't manifest (if they do at all) immediately. I hope not!



6/15/2011

Back visiting in Indiana, more on the reason why later. Sis Brenda and I flew out together, she coming from Hartford this morning, and us meeting in Newark for the flight to Indianapolis. The weather we left behind was gorgeous. Thunderstorms here, but they are moving away. And when I say "gorgeous", it's in an odd way. It felt like Fall. I had my start-of-term nagging feeling that things were being left undone. This is just the latest in a month of strange weather oscillations. A few days ago we had to run our furnace (it's June!), and just a few days before that temperatures were topping out near 100 degrees F. Feelings of time and place got wrenched around as each new weather 'burst' brought with it a memory-sense of when that set of temperatures and humidities should be located. What time is it? What day is it? Yikes!

All that aside, summertime is definitely here. I'm working well on some projects. I just finished three pieces I've been wrestling with for the past several months:

and while I'm putting up some links, here's a few more recent ones: The review by Dave was a real surprise. I really enjoyed talking with him. What was interesting is that our political views were very different in many ways, but we were still able to discuss things, listen to each others' viewpoints, all the stuff that should happen in a free democracy. My sense is that people all across our country can do this, and in fact they probably do. Unfortunately what passes for political discussion at the 'higher' levels of our mediated society is anything but a reasoned exchange of ideas. Darn. Was it ever? I think it was, and hopefully after the political pendulum is done careening crazily around it may settle into something resembling a civil society again. What a silly optimist I am.

I am feeling optimistic, because I'm actually feeling good again. I had forgotten how nice it is simply to feel nice when I wake up. I've done two cycles of the Velcade sub-Q injections now, and no evil side-effects have shown up. I hope it is working.


6/18/2011

In my previous post, I said "more on the reason why later", referring to my presence in Indiana. Thursday night my Mom and Dad received honorary awards from Ivy Tech, the state-wide community college system in Indiana. The occasion for the awards were the retirement of both of them at the end of this month; Mom from the Regional Board and Dad as Director of their Leadership programs. A pretty significant life-change. Although my dad was downplaying the event, as he usually does, my sister and I decided to come out anyhow.

I'm really glad we did! It was a wonderful time, and I think both Mom and Dad were deeply touched by the good friends who attended the reception, the dinner afterwards, and all the genuine words that were said about their service to Columbus and Indiana. I know Brenda and I both were.

We also had a chance to see friends of our parents' that we hadn't seen for years. I was surprised by how many had been reading -- and were still reading -- this silly blog. I think I'm running out of things to say! Where did all that "perspective" stuff go? My cancer is just another facet of life, no more staring-death-in-the-face insights are springing forth. All I probably have left are the platitudes we all find ourselves living with: "Life is what you make it!" "Each moment is precious!" "Carpe the diem!" You get the picture. I guess there is some truth imbedded in these now-dessicated sayings, but you probably do need to stare at death awhile to gain it. In the meantime, be sure to "Live each day to the fullest!" Yeah.

It is tempting to pull the "perspective" card when you learn of people facing cancer difficulties themselves. In the past month or so, I've unfortunately learned of several friends who have been diagnosed with various cancers, two of them receiving terrible news of bad brain tumors. Can I say to them, "I know what you're going through", because at one point in my life I thought I was going to die quickly? No, I can't. We can't know what anyone else thinks when confronting our mortal truth. How we live our lives, what we believe, what we value -- these are unique and private things, I mean the real, truthfully private things we don't share. We're all dying, and we each decide the measure of existence that will inform our death. Maybe that's what the repeated life-platitudes are intended to do, provide us with a template for determining that measurement. If so, choose them carefully.

I'll end this overblown entry with a 'perspective' story, one where getting older does indeed give a slightly broader view of life. On the way to the reception, my dad was grumbling about the event, how no one would probably show up, how silly it was to have these receptions, etc. Then my mom started saying how it would be the best retirement reception ever, how everyone would be utterly delighted to be present. My sister and I started laughing out loud. This was our childhood! Between the sometime-poles of our parents, we've managed to find our way. And we're both happy about what we've found. We then wondered how our kids would be. So far, so good!


6/21/2011

Summer solstice today. I'm up in New York this evening, my appointment with Dr. Pearse is tomorrow. I went up on the roof of our building to watch the sunset, but clouds had moved in. The sun did make a brief appearance: but mostly the sky looked like this: Another way to measure time. I think I can now easily count the remaining number of summer solstices I will see.

Retirements are big time-measuring events, of course. As I mentioned above, being at Mom and Dad's reception was also an excellent opportunity for reconnecting with good family friends, people we have known for years. The unpredictable nature of life was very much in evidence, both good and bad. Unforeseen things intersect, life goes one way or another, and you look around and wonder (to paraphrase David Byrne) 'well, how did I get here?' My sister and I were so young once! We had such plans for our lives, our friend's lives!

The trick is to take where you are as it is, and then try to work from there. Quite a trick, too. The light then waxes and wanes, summer and winter solstices continue to mark our time.

There was a nice tribute to my Mom and Dad written by Harry McCawley in the Columbus paper:




6/28/2011

I'm in the apartment, listening to Dancing with the Moonlit Knight from the early 1970's by the band Genesis. Listening, I remember high-school summer days with Pat Kennedy and Geoff Pacheco. Music is a time-travel machine. It's summer now, here, and I never could have imagined back then how life has gone. I've spent the afternoon hacking iPhone/iPad music software with Damon Holzborn, also dealing with some of the small disappointments that happen. But I'm in an apartment in New York, I worked on digital music software most of the day. When I listen to these old Genesis pieces, I can catch a memory of what I dreamed my future might hold. It wasn't this. This is better. The music time-travel only works in reverse, apparently.


7/7/2011

Memory is a tricky thing. I'm almost finished reading Geoff Dyer's book of essays Otherwise Known as the Human Condition. I've enjoyed quite a bit of it, and several times through the reading I recall having really good ideas bouncing off his observations. I forgot to write them down, no notes or anything. Now I can't remember the ideas at all. For one of them I can even remember the page in Dyer's book. There was a quote from Nietzsche, it was somehow central to whatever I was imagining at the time. I go back to that page and I'm befuddled. Whatever it was, it seemed at the time like it was a terrific thing to think. Honest!

Through all this, I've been thinking even more about memories, how slippery they are, how they define who we are, how we see ourselves. Maybe because they are so mutable we can live with our "past" and map an acceptable future. I've begun to sketch work for a new book-thing, based on recollections. Oh I am definitely old: "Listen ya dang young-uns, when I was young I remember..." But these days I do think much about how life has gone, how we all got here, Music helps to run the show (see my above post about the band Genesis). It's really difficult to write these things though, because the memories have a tangible nature that's almost impossible to distill into plain text. Especially difficult when you're not really a well-texted person like me. Perhaps I should stick to the music, but I want to impart a concreteness to some of the memories that music alone is too abstract to do (unless you happen to be me for these particular memories...).

Anyhow, I'll try a few things, see if any of them work. I hope so, I'm kind of at a low point work-wise. June didn't go so well -- more on this later.


Oh, by "June didn't go so well", I don't mean with my health. I continue to tolerate both the Velcade and the Revlimid well, and my stats seem to be staying low. I'm even feeling semi-good now!



7/14/2011

As I get older, I notice that I become more and more resistant to change. I enjoy days that are similar in most ways to the previous day, or days that are predictable (based on past experience) in their overall shape. I like it when I logon and I don't have "interesting" new e-mails. I'm happy when the phone answering-machine light is not blinking. I want life to remain the same. Good. Pleasant. "Normal".

I'm not sure this is a good thing, but at least I am aware of it. And to be honest, when something new does happen and I start in a new direction, it's great. I feel alive. But overcoming the inertia to to get to that point seems to be getting more difficult each year.

Here's an example: We had to take down a large pine tree at the front of our house. Back in the Good Ole Days, when Roosevelt was first built, the designers were convinced that oil heat was the Way of the Future. It wasn't, and our house was converted to gas heat long before we bought it. The oil tank was filled with sand, but a small amount remained in the tank and has since leaked into the ground. We are required to clean it, and the bulk of the oil percolated underneath the pine tree. Also, the tree was approaching 60 years old, and it had developed a decided lean towards our house. Maybe this wasn't a good situation.

I didn't want the tree to go! Oh my! I used to gaze at the branches against the sky while lying chemo'd-out on the couch. Never mind that we can now put in a new tree, a re-imagined landscaping. Never mind that the branches I used to watch had to be trimmed because of snow-damage in the past two years. I didn't want things to change. I want Lian and Daniel to be young forever, I want Jill to be un-jaded by the recent NJ governor horrors, I want... well, heck. Lian has grown into a beautiful young woman, Daniel is doing wonderful things in school, Jill is still the most amazing woman I know. Change. I've been cleaning my upstairs closet, going through past papers and photos. A litany of change, not bad, and here we are.

The only thing that really didn't change that I was hoping would is my myeloma stats. I had my appointment with Dr. Pearse yesterday, and things are unchanged. Not good, not bad. This was based on blood-work done three weeks ago, that was only with one cycle of the Velcade. I guess I wanted a single molecule to destroy all my cancerous cells. Change!

before and after pine tree pictures:

   

   


For more pictures of the before/after tree-removal, click here. I went a little berserk with the digital camera.



7/24/2011

There was a terrible tragedy in Norway two days ago. Jill's been dealing with raw sewage polluting the Hudson. The small-minded but far-reaching budget atrocity being delivered upon our country in the name of 'fiscal responsibility' (no link even necessary here), holding the USA's ability to pay its debts hostage in the name of a radical right-wing political ideology, is simply awful.

Here I sit, making sounds that pretty much only I will enjoy, will hear. I write words that it seems only I am interested in reading (or perhaps a handful of others). I used to believe that what I did -- or perhaps more importantly how I did things -- would matter, would help effect some 'good' change. I think the mass of badness is far greater than I ever imagined. And I know I am far less significant than I thought I might be, back when I was in my late 20's.

Arg. Mope mope mope. It's also really hot and humid outside. I need to perhaps write more here, but what to say? What do to?


7/31/2011

Here it is, the end of July. Summer is now 'officially' about two-thirds over, and August is a bit jammed with traveling. I need to get my butt in gear to finish up some summer projects! It's been very hot and humid the past two weeks, very much a summertime. I have my appointment with Dr. Yi tomorrow for my Velcade injection, and then my three-week checkup with Dr. Pearse on Wednesday. It's also time for my six-month Zometa infusion, so I'll probably feel a little lousy later in the week. Not too bad a price to pay, though. I needed to have it done sometime this month, and the only other possibility was the day before I am to fly to Uruguay. I figured that wouldn't be a really terrific idea.

It's funny how quickly we accommodate to changes in our lives. The last time I was over to get my injection at Dr. Yi's office, it was a hot July summer day, and it seemed like I had always been doing this activity. So "normal". I could see myself doing this same trip, this same sign-in, waiting, blood test, consult with Dr. Yi, then infusion-center injection for the next however-many years. This is now my way of being.

With a disease like cancer, it's tempting to compile a litany of 'things I won't do ever again' as part of this "new normal" -- I won't be playing tennis, I won't be skiing black-diamond trails (Dr. Pearse warns that high-impact activities are not good for brittle bones), I won't be doing this or that (often thankfully so!). It's so easy to formulate your existence in the negative, and I do it often. What can I do? What will I do? These questions that now litter this blog. I need to think of answers. Or maybe not.




8/17/2011 -- next page