Visual arts have always been a personal interest, and even as a musician I have always associated images with music. When Lennie Moore brought to his SFCM class a member of the Scary Cow film collaborative in 2016, it gave me an opportunity to connect my musical composition skills to filmmakers. This resulted in my developing opportunities to score and record music for a half dozen films. (Some are viewable online.)

In 2022 I began filming my own story — what I call “Coming Home to Music” — after 50 years in Computer Science. As a teen, I was a pretty good pianist, and when I went to college I had made a choice between studying engineering (and then computer science) or enrolling in the American Conservatory of Music to study piano performance. I chose computers. Then in 2015 I came back to music full time at the San Francisco Conservatory of Music. In 2022 I decided to commit this story to film, and as luck would have it, found three other SFCM alumni who had stories of a similar trajectory — and were really perceptive and willing to tell their stories. The four stories are now woven into one single feature film Play It Again — Coming Home to Music and How It Changed My Life. (online) It’s great how the stories dovetail and how each of my co-stars is able to tell their story in ways that are clear and deeply insightful.

Both film and music businesses are so completely disrupted that it’s a constantly changing landscape. Streamed music pays almost nothing at all (roughly a sixth of a cent per play) and only the megastars make an income on streaming. And mostly the money is in performance, not recording. In film, blockbusters are the big news and tiny independent films pretty much never get seen. So the trick here is to break the mold and find other ways of paying for a film, not just ticket sales. Workin’ on that.

If you’d like a peek behind the scenes at a music recording session, take a look at this 2023 short I produced. Making the Music of Happy Goat (online). We filmed this in 2022 and much of it is included in Play It Again.

Now for a preview of 2024, we will be spending much of our time at Ensō Village in Healdsburg, where a community based on Zen and Quaker values is being formed. Over 200 living units and many interesting people with fascinating stories. Next year’s report will certainly cover a lot of that ground. (Current online sources of information are limited, and I recommend you wait for my future report.) The people are the attraction.

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From frost on rooftops out our windows (San Francisco – frost?) to the vivid red maple blooming in front of our home, we continue to appreciate life and beauty!

Kathryn: I am still leading the Feldenkrais program for adults with severe neuro-motor challenges at Bay Area Ability Now and also co-leading a weekly meditation practice group for Tergar International on Sunday mornings, with my colleague Cristian Lotito—something I’ve done weekly since April 2020, and monthly in person before that. The photo shows me with Cristian and Mingyur Rinpoche, Tergar’s Founding Teacher.

I was drawn to the work of Roshi Joan Halifax (photo left) several years ago, and I am delighted to be able to study with her “in person” on zoom. (You can see my small face on the zoom insert above her head.)

Jim/Sky: It’s been mostly-sunny days this week on the ski slopes near Lake Tahoe, and we’re happy that we’re both skiing — at least on the fair-weather days. (Temp 36°F day and 18°F night)

Despite a ski injury last January, Kathryn has continued skiing and loves it — as she has for many years. These photos of us were taken yesterday!

 

Jim/Sky: Kathryn also got to visit with her sister Susan Amber Gordon on the East Coast, despite our lessened eagerness to travel since the start of the pandemic.

 

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Play It Again

Jim/Sky: In 2022 I started producing my feature-length film Play It Again about “Coming home to music.” I’m personally an extreme example of this. For me the coming back started in 2014, then accelerated to full tilt in 2015-2016 at The San Francisco Conservatory of Music, where I completed a full-time post-graduate year in Technology and Applied Composition. At that time, I had already been thinking about making a film about the experience, but there just wasn’t time to complete the coursework and do a film at the same time. So in February, 2022 I finally started filming. An intermediate full-length cut of the film is completed now (December, 2022) and with the filming of one more scene in January, we will have it all “in the can.”

When I went back to music in 2015 I said that “software had caught up with us” and was finally enabling a new breed of composer and compositional process — with sampled instruments it had become possible to compose and play back in real time at good quality — a new cyclical compositional process much like software development. Well by 2022 it was obvious that iPhone hardware and software were advanced enough that “filming” could be similarly streamlined and available to far more would-be producers. So I became one of those. The film is almost entirely shot on iPhone with wireless sound recording right into the camera as well. Sign up for more film info!

Play It Again — Coming home to music and how it changed my life; filmed in 2022, and scheduled for release in February, 2023. New audio albums are in the works for Q1:2023 augmenting the existing albums. Amateur Music Network; I’m on the board of directors of this org that promotes “the love of music” including upcoming workshops and a library of video of many past workshops. Joined the board of the Ross McKee Foundation, which promotes piano performance. We had a private showing and panel discussion of The Third Harmony, a film I scored in 2020. CDs of my albums are available now via special order. Just ask me.

My film will be available in February, 2023, and if you visit the Play It Again web site, you can sign up there for email notification.

(The space above is where the intro video should appear. It may be empty if you have opted out of ‘statistics’ cookies. You may play the introductory video on Vimeo)

 

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My first two films were Indulgence (Leo Maselli) and The Third Harmony (Michael Nagler).

For those of you not familiar with how a composer creates music for a film, I thought I’d go thru how Kip and I collaborated to put music to this story.

Scoring the Film — How we Started

Kip and I had a chat about music for her film months before anything was shot. Late in 2020, the shots were all “in the can“ (with COVID protocols on the set) and Kip gave me an early rough cut of the then 24-minute film. The editor, Charles Anderson, had done an excellent job cutting and assembling the scenes, and honestly there was very little that changed in terms of scene lengths between then and the final version. At this early stage the final colors weren’t set — the film looked somewhat grayish — and the dialog was basically unedited, requiring selection from among multiple microphones, and sometimes a bit of sonic cleaning up. But the sequence of shots was close to final in this case, and the story line was clear. (Not every filmmaker works this way.)

At any given time I have dozens of songs or musical ideas just waiting to be used in films. So I pointed Kip at my online music bin and said “Listen to everything — at least the first 20 seconds of each — and then let me know what pieces of music you feel might work in the film. Based on her suggestions, I then refined (and added) what I thought might work, but mostly we worked from her selections.

Interestingly, a large percentage of what she liked had already been used in films. This is actually no problem, because it helps me understand what she was reacting to.

I then took a set of about eight of these and positioned them within the rough-cut film, so we could review the film with dialog and with my suggested music.

Making the Music Fit the Film

My digital audio workstation [DAW] is the Logic Pro X app (from Apple), which allows me to view the film second by second, and directly position the music against each cue in the film.

In the screen shot above, the film runs left to right on the timeline, and below it are the various pieces of music looking like a colorful waterfall. Each is positioned where it’s going to go time wise in the film. The goldenrod colored bars are the sound effects and the dialog of the film, which run its entire length.

Wherever music needed to be stretched, I just wrote more music — basically I had all of the instruments available to me there in real time and I just write and tailored the music to each scene. A couple of pieces of music I adapted to be shorter. As composer, of course, I have complete flexibility to do anything I want to the music, and I do not have to worry about whether Beethoven or Mozart would complain. I just make whatever changes I wish to make.

The 25-minute film ended up having 10 music cues by the time we finished. Very little silence, and honestly almost wall-to-wall music. In some films I add “designed sound” to scenes, but in this one we remained melodic and instrumental instead.

The “Alexa” Segments

Most of the music in the film is “movie music” — the kind you’re used to from many films. But, also for this film we needed three very short (10-second) pieces of diegetic music. Diegetic means it’s part of the action in the scene. In this case our heroine asks Alexa to play some music. We needed 80’s pop, classical, and jazz. Rather than license from someone, I wrote the jazz, asked another SFCM composer (David Tippie) to write an 80’s pop soundalike, and paraphrased Erik Satie for the classical (out of copyright) segments.

So What’s New?

This is the first time any of this music has appeared in any film or album.

Only one piece of music was written specifically for this film. Everything else was waiting for the right time and the right film. All of them were written in the last 3 years.

Once the entire arc of the music for the film was completed, and after a small number of revision rounds, we were set to go. For this film, I provided the sound mixer with three “stems.” These are audio files that run the entire length of the film; in parallel; and the volume of each can be adjusted based on what’s needed at any instant. In this case, I provided a finished “mix” with all of the instruments at the volumes I felt were best at every second in the film; but I also provided a full-length file consisting of the music without any drums; and finally a full-length file with only the drums. It’s the job of the film’s sound mixer to use these along with dialog and sound effects to make the finished audio for the film. I get to listen to it and comment, but I don’t play a direct role in its construction once I’ve turned over the stems.

The Trailer

The one original “song” was the most emotive and wrought-up of the group, and it fit the mood of the trailer perfectly. (Charles Anderson, the film’s editor, did a terrific job piecing together that trailer) The music was actually significantly longer than the trailer, so much as I did for the film, I placed the trailer visual in my DAW and then stripped and recomposed to get the effect I wanted for the trailer. I could literally work down to the precise frame in the video. The drummer in the trailer actually is a different drummer than was used in the film…for emphasis…I love those huge taiko drums and so that’s what I wanted at the end of the trailer. In the film itself there’s some quasi-taiko drumming, but not quite that much.

The Album

After the film was fully locked and music was mixed, I took the music itself, which spanned the 25 minutes of the film, and created a new project in my DAW just for the audio. The film had scenes with no music, so I expanded the music to be end-to-end 25 minutes, by adding and extending some of the selections. I also created a broader sonic spectrum and changed some of the instruments. Music sounds different when standing on its own (that is, when “supporting” action and dialog). This somewhat richer version of the soundtrack then becomes the Original Motion Picture Soundtrack album. This goes into the queue at CDBaby for distribution to all of the streaming services. Once it’s distributed, it can be played or downloaded online. SkyHi Digital has a page with links to the album on the various streams.

The interaction with the film’s producer, and the film and sound editors, was very good. Feedback usually makes huge improvements. It’s good to have many ears listening to the music when it’s being refined. Collaboration works wonders.

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It has taken all those years for me to get around to not only making video but setting things to my own music. And here are the results.

(To play all four videos, use this playlist. Otherwise play individual videos below.)

For the May 2019 TAC concert I had developed a four-part suite entitled Magic into a piece for piano, violin, oboe, clarinet and cello. Then I remembered my good friend Jeff Goldsmith had a few years ago been creating nature video loops — video of forest, water, fields, flowers, that just kind of plays peacefully on the screen. Like a virtual fireplace or virtual fishbowl. And thought “Why not repurpose some of those as backgrounds for this music?” So I did.

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The team completed the shooting of Indulgence early in 2019 (after postponement due to too much smoke in the air late in 2018). This week I saw the first rough cut of the film. I already wrote most of the music for Indulgence, and the next task is to cut-to-fit and add incidental music for this segment.

As part of the promotion and documentation of how we made the film, Erik Parker interviewed me about the creation of the music for Indulgence. Without comment, here’s that interview that he and cameraman Jason Fassler captured.

A Sonic Indulgence from Erik C. Parker on Vimeo.

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“Inspiration is for amateurs. The rest of us just show up and get to work.” — Chuck Close

I refer to (music) composition as “design and engineering” which reflects my experience that ideas are the easy part, but the hard part is then designing and building the product. I say “product” here quite intentionally. As an engineer, I spent many years building software products. In software, the idea may be subtle and tricky, but it’s still the easy part compared to the design and then the hard work of building — which is where the real time is spent.

And to a great extent, if you’ve studied and trained and understand how to use the tools available to you, and if you just show up and start working on your product, you usually (already) have what you need to accomplish your goal.

So for years I did this in software. And then in 2015 I started doing it in music.

Yeah, yeah, sometimes I get inspired and I write and write furiously late into the night. The endorphins tell me it was a great work. And frequently I then put aside my product, take a rest, then pick it up later on and yeegads(!) it sounds terrible to me. (Inspiration can be delusional.) And then there’s just lots more work to do. But that work is required to achieve the payoff. And if I do the work, the piece becomes so much better!

In my days in software I’d have people pitch me software ideas many times a year. My reaction was frequently, “Well, that’s a nice idea, but have you written the program?” I guess I was a bit brash, but many times I’d continue “Your idea is nice, but it probably represents less than 10% of a product, which requires hundreds if not thousands of hours of engineering.”

Another thing I’m fond of saying is “When you have a novel idea, you can bet that 8,000 people got up this morning and had that same idea; then 80 of them did something about it, like pulling together a team; then 8 of them will bring your product to market within the same two weeks.” That’s kind of hard for an inspired ideas person to hear, but it represents the harsh truth of the world of commercial software. Ideas come from lots of experience, and from creative responses, but they’re seldom completely unique.

Chuck Close is quoted in Inside the Painter’s Studio, a book by Joe Fig. A review of this book goes on to say “Inside an art gallery, it is easy to forget that the paintings there are the end products of a process involving not only creative inspiration, but also plenty of physical and logistical details.”

Those of us who do this kind of design and engineering, understand and appreciate the fundamental truth of this statement.

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The next step after that is to hear someone humming your melody while walking down the street.

And extending that, the ultimate compliment  might be when it becomes someone’s ringtone?

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Turns out that “The Orchard Music” which is owned by Sony, claims that the very last note and the applause from our performance is stolen from a recording they represent. And it’s not even the same note. Mine ends on an F and theirs ends on an A-flat. Ah, but they are both notes on a piano. Just joking.

Well obviously this is a match made by some kind of automated process, but it’s grossly weird 1. that applause would even match; and 2. that it depends on The Orchard Music now to release their claim. Meanwhile it is assumed that they do in fact own that section of my recording, and they can monetize (put ads on) my original recording.

You know what’s even funnier. I just listened to their recording on YouTube. And now it shows that in its entire history it has had one single play. Meaning that I am the only person who has ever played their YouTube segment. In the full year that it’s been on YouTube.

(Outcome: “The Orchard Music” released their claim on July 18th, just over two weeks after it was made.)

Here’s the performance I’m talking about, In case you want to hear my entire recording…

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I’m hearing some improvement. Particularly learning where the notes are on the fingerboard. And learning to press all those fingers down and keep them down. Learning legato playing. Able to get the bow positioned better, but not perfect yet.

The most important thing from my third lesson was learning that I really have to press that bow against the strings as if I meant it. This gives a much better tone. (I keep forgetting.) Much better tone. And you’ll see those little silver strips across the fingerboard up near my hand — they’re there to remind me exactly where to put the fingers down to get the right pitches. (And there’s a little felt piece on the back of the cello neck where my thumb has to go.) It’s easy to forget, but when I do remember, I can actually sometimes his the right note the first time.

Ummm, did I say that the reason I’m learning cello is to understand what the string players have to do in order to play my compositions? Gaining empathy for sure.

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One is this idea that I have to change hand position to a new string to play more notes. I’m used to being able to slide my hands left or right on the keyboard with the notes just kind of laid out one after another. The idea that they might be side-by-side — more like “overlapping” — is challenging. Not phased too much by having to do different things with left hand and right hand — that’s something we also learn in piano 101. Though I’ve never played a guitar, I can imagine that it would be way easier to “hit the right note” if there were frets on the fingerboard. The cello is truly a challenge in terms of intonation. There’s nothing telling me in advance I’m going to put my fingers in exactly the right spot to hit that desired note. I hear it “after” I make my selection of position. Yikes!

I made a short recording improvising on the cello, in Logic Pro (think GarageBand) and then threw it away. I’ll document that kind of thing later on. It was truly terrible.

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I find that taking a stab at new things that are really complex, is sometimes fun for me. Gives me enough experience that I understand the basics about some new activity or subject. Does not get me into a rut, so I can still think in creative ways about using a half-baked skill I’ve acquired.

In composition this sometimes becomes for me a fascination with chromaticism (as opposed to tonicity), which may leave a piece of music sounding less “finished” to the classical ear.

So what’s new now? I decided a few weeks ago that I want to understand better what the musicians are thinking when they read and play my music. And since I worked on string parts so much during 2016, I decided to learn to play the cello. Jason O’Connell, who is quite accomplished on viola, convinced me that it would require fewer wrist contortions than violin or viola. Convinced me. And it sounds so good!

I went to some concerts. I listened to some recordings. I sat through (in the audience) a master class. Daunting, because clearly it’s not the easiest instrument to master.

Jason suggested I take lessons from Eugenio Solinas, who just completed a PSD at SFCM this year. I was able to convince him to add me as an “older” student while I work really hard to learn the basics. I’m committed to doing this long enough to really value the experience, not necessarily to become a great player. On the other hand, it would be a real kick to be able to record some of my own compositions. And as the composer, I can make the compositions as simple or complex as I want to.

The week after SFCM classes ended, I took my first lesson. Woo hoo! Off we go.

My video (above) was made the day I obtained my rented cello and before I was taught any technique at all, and I had been playing around for a few minutes first. My first actual lesson was the next day. I’ll report on how it goes.

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“Experience is not what happens to you; it’s what you do with what happens to you.” – Aldous Huxley

Another year will soon start. Lucky to have made it through this one. Huxley’s thought (above) is certainly what I feel tonight. This past week I’ve gone through a fascinating medical procedure (where the sedative didn’t do as I had expected…and so I had some experiences I had not forecast), and I’ve written more music (extended both Beings of Light and Darkness and my Dakini Dances). I want to focus on more music every day. So for the last day of this year I’m going to commit to focusing on writing new music that whole day. And on into whatever my future is.

And in addition to that, I intend to keep my eyes open and work with those who would support the preservation of our freedoms and rights. I have a new appreciation of the US Constitution and its protections—and the underlying fact that power is given to government by the people—power is vested in the people, not the government. And also how fragile this relationship can be.

So we have our road rising up ahead of us. We can kind of see it through the haze. We have glimpses of what’s coming. But we have to take each turn in the road as it arises. Let’s go!

° ° ° ° °

(If you’ve already listened to the playlists below, the new music is at the end of each playlist. You can mouseover each list, scroll downward, and click to play the more recent additions. The last movement of Beings is new. The last two Dakini Dances segments are new.)

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Light, as you know, is energy. Photons flying through space. Our sun, like most stars, emits photons, which rush outward from its surface, and many of them strike the Earth, where they warm our clouds, oceans and surface. But without humans, those photons are just energy transfer mechanisms. They have no inherent meaning.

Humans often attribute meaning to light. Daytime is light and pleasant. Warm, sunny days are wonderful. Cloudy dark winter days can even lead to seasonal affective disorder [SAD]. Colors affect how we feel. We also use light to transmit information—fiber-optic cables for instance. are high-capacity channels transmitting information from one continent to another under the oceans. You’re reading this article because light-emitting-diodes are lighting up your screen, and photons are hitting your eyes, which you then interpret as words and images. There’s meaning there, and it’s all in your head.

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Well, the summer of 2016 was pretty remarkable. The day before SFCM graduation, May 19th, I had a minor surgical procedure to investigate and treat some red spots in my bladder. They had been there for a couple of months, but didn’t seem to be a problem. A day or so later, we knew these were not just innocent red spots, but were accompanied by a rare invasive and aggressive bladder cancer.

It’s About Time

We sometimes think of time as a commodity, speaking of it as if it were something concrete. “We’re spending all our time together.” “You could invest some time in learning Spanish.” “You’re killing time playing games.” “Don’t waste my time.”

When you get a cancer diagnosis, the sense of time as a commodity can weigh on you. What if I only have a few months left? What would I want to do with this time? Yeah, sure I’ve always been conscious of limited time, but on this day it became way more important. I did decide to stay focused on things I thought would outlast my body, and yet still found time to watch a couple of funny movies. I was able to create a few karmic eddies during the treatment process.

Creative Work Continues

Immediately following the diagnosis I  started composing a suite for string orchestra. You can listen to the work-in-progress on SoundCloud, or in the player below while you read this long article.  I also improved some pieces that I had written last year. Listening to some parts of this new suite moved me to tears repeatedly. Writing and listening were both hugely cathartic. And it reminds me that although composition is an intensely intellectual activity, I frequently cannot identify the origin or inspiration of the music I write. It just seems to happen. (Though it needs a lot of work to bring it along.)

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Support Networks

Dealing with bladder cancer, and especially a meanie type like the one I got, has been a trip. My personal support network is the best, and includes wife (Kathryn) and sons, and extended family, and health care professionals, and friends I’ve known many years. Everyone was “there for me.” Would I even be able to come through for them if the tables were turned?

Kathryn was able to find a lot of information, and many people who are either on the cancer journey now, or are cancer survivors at the BCAN network. There’s also a BCAN online forum at inspire.com and you could spend days there reading stories, so if you want to explore it, do it later on. Forum participants range from newcomers to extremely knowledgeable, and are immensely articulate and supportive.

The Team

My urologist here in San Francisco not only spotted this subtle cancer in the bladder, but he had an email acquaintance with the head of the urological oncology department at Stanford, and she agreed to see me right away. The wonders of quick email turnaround. The pathologist’s report cited some features in the cancer cells that were rare, and my urologist knew that my case should be handled by someone who specializes in these rare cases and knows the procedures that will mitigate the problems. It took some time to get that first appointment at Stanford. (“If you have any cancellations, let me know, I’ll come in at any time.”) Keep in mind that I’m self employed which means that for the most part I control my own schedule. So I can make myself available almost any time. It still required effort to get those appointments set up.

Mind Training; Mind Taming

Waiting is the mind killer. Tibetan Buddhist teachers sometimes refer to monkey mind—letting the mind run on in endless chatter. If you let your mind get going on calculating a prognosis, or figuring out the many possibilities, you can get sucked into worry and obsession. I did not. My mind training is moderate, having practiced Transcendental Meditation back in the 1970s, and having done a lot of silent meditation in Quaker meetings. For the last 13 years I’ve been exposed to Tibetan Buddhist mind training practices, and I’ve absorbed a lot of the silent practices—though none of the mantra-based or chanting practices—and everything was useful. Day after day, hour after hour, minute upon minute, I’d find myself clearing my mind and relaxing into non-judgmental, mind-clearing meditation. It may even be a natural tendency for me, and it was indeed my constant practice during those several months.

From Diagnosis to First Treatment

I will refer to the San Francisco May 19th procedure as the TURBT. It is a trans-urethral procedure using a fiberoptic scope and tools to biopsy the bladder walls. In my case, my doc, Dr. Stuart Rosenberg knew there were two patches of cancer in the bladder (carcinoma in situ), and while he was in there with the scope, he investigated a third, very small, red patch which turned out to be the more threatening and very rare cancer. If he had not had the experience to spot this, my outcomes would have been far different.

Following diagnosis, the first task is to plan a course of treatment, and in my case select a surgeon. In my case this was Dr. Eila Skinner of Stanford, who explained to me the several options in terms of dealing with so much cancer in a bladder. There were options, but all involved completely removing the bladder. It was just too messed up to salvage, and the aggressive cancer was going to spread if given a chance. So I was booked for radical cystectomy with neobladder, in which the urinary bladder is removed and a section of intestine is repurposed to serve as a small bladder, replacing the cancerous organ.

Then more waiting, to get an appointment with the oncologist, Dr. Sandya Srinivas, who would discuss and help choose the chemo (or other) therapies that might be used before or after the surgery.

Many Steps, Lots of Waiting

The planning meeting with my oncologist was a most memorable hour for me. Dr. Srinivas came into the examining room with the pathology reports from the TURBT biopsy. Completely professional, she clearly was concerned about what she was seeing. This is something they see at Stanford only a few times a year. And a particularly difficult type of cancer. The treatment options were unclear because they didn’t have enough real data to know what was most likely to work. (Reading about my condition online, people say “this is the one you don’t want to get.”) Dr. Skinner joined us in the room, and they discussed the options. At this point I had not really appreciated the rarity of this cancer variant, so although I was tracking the options as they were discussed, I didn’t know that the lack of data was so profound that intuition and personal experience, not data, would play a central role in the decisions. If you’re ever in a situation like this, having world-class experts is so critical! I could see the mental wheels turning, the quick parlay back and forth between the experts, leading to the suggestion that I get two rounds of aggressive chemotherapy followed by surgery. But even then, there was the possibility of going directly to surgery rather than spending time on chemo, which had not been shown to be directly effective at stopping this type of cancer. Amazing how much the decision seemed to also rest with me, not just with the experts. And there we have it again—the idea of “spending time” on one therapy or another, with the aggressive cancer possibly blazing away devouring my bladder and possibly other parts of my body while we pursue a useless therapy. Best practices imposed a limit of about 90 days between discovery and surgery, and anything more could be dangerous.

I said “I want to be aggressive in treating this disease.” So the team chose to put me into two 14-day rounds of dose-dense MVAC chemotherapy. This was to be administered at the new UCSF Cancer Center in San Francisco by oncologist Dr. Terry Friedlander, to reduce my travel time, which could be important if I suffered nasty side-effects from the chemo. Two rounds is relatively few for chemo, and in fact it’s kind of a compromise between two views, one of which would rush to surgery immediately, and the other of which would complete more rounds of chemo to try to reduce the chance of metastatic disease. The middle road, two rounds, was chosen because my type of cancer just didn’t provide enough data points for the team to know what would work best.

Chemotherapy

The ddMVAC chemo includes a platinum compound, which can cause hearing loss or tinnitus as a side-effect. As a (new) composer, I was concerned about hearing loss. (I already have considerable high-frequency loss.) So I considered a PD-L1 immunotherapy trial, which was in place at UCSF, which doesn’t have this potential side effect. However, the response rate to immunotherapy is only between 20% and 40% of participants, which I thought was low. So I avoided the immuno trial in favor of the chemo, which I thought had a better chance of working. Turns out that this cancer’s response to chemo is probably low, perhaps even lower than 20% but I didn’t know that. In fact, there is so little data on this specific cancer that nobody really claimed to know. (Ultimately I do feel there were signs that the chemotherapy did work in my case, so this was the right choice for me.)

Chemo therapy began. Somewhat apprehensive because of all of the potential side-effects, but also upbeat because I wanted to get down to business and start trying to kill the cancer cells. Impatience. Waiting. Meditating. Waiting. Wondering if chemo was doing anything.

A round of chemo consisted of a short day during which two hours were spent infusing chemicals, then a second day of about six hours of infusion, and an injection of growth factor on the third day. Then wait out an additional 11 days for a total of 14. For the first few days there weren’t even any odd feelings. Then about day 5 some fatigue and a little nausea. Food was OK. No significant weight loss. Had to stay away from folks with colds during the second week because of suppressed immune system. In the second identical cycle I experienced more nausea, though the active side-effect itself was confined to one day. I must say that I was so jazzed to be taking action against the cancer that even the most potent side-effects still would have had an uphill fight. 90% of my hair fell out near the end of the second cycle. That was trippy, in terms of seeing myself as a different person. A cool baseball cap helped me conquer this and keep my head warm. Now I know why my shaved-head friends all wear caps!

Following the second round of chemo, there was a CT scan to determine the status of the cancer. It pretty much indicated “no change.” Now that’s actually not bad! The thing we feared was that the cancer would continue advancing even with those chemicals in my bloodstream. It apparently did not.

The journey was a real rollercoaster ride. Initially, I thought there was only a small chance I had carcinoma in situ, which can be treated right in place. Then after the TURBT it was clear I had something worse, that might require major surgery. Then waiting for appointments. Then chemotherapy, during which I felt pretty good and frequently wondered why I was doing that rather than rush to surgery. Then waiting after the chemo. Then the surgery and five-day hospital stay. At that point I still felt like there had been nothing wrong with me. Then the pathologist’s report showed serious cancer, and that it had been successfully removed. And now three weeks after surgery, learning to urinate from my new neobladder and honestly feeling pretty well.

The Non-Medical Side

What about imaging and prayer and healing practices? Well, I did a fair amount of what I would call imaging work, where I entered a meditative state (calm mind), but bringing to mind an image of holding the cancer cells cradled in my abdomen so they could not escape to the rest of my body. Did this actively a few times a day. All around the world there were folks praying for me and holding me in their thoughts. Whenever I sit silently and with a spacious mind, I can feel this broad community of people holding me up. I did also have three conversations that were in the category of angelic healing, which I felt were instrumental in helping me open my awareness to aspects of my way of being in the world. These opened to me several new thoughts. One of these is that as an adopted child, I didn’t feel “held” and loved by adults in my early years. I can imagine what it’s like to have this warm feeling of safety, but honestly searching my awareness I couldn’t find it in my own memory. Understanding this helped me become more accepting of help and concern.

On the Bus

From the time of the diagnosis, I formed an image of this cancer “traveling the road” with me for a while, but I knew I’d try to ditch it as soon as I could. Perhaps it had gotten on my bus with me, and started up a conversation, but I felt no obligation to continue hosting it. As if I were saying “Nice to meet you, and I hope I learn some lessons, but you’re getting off the next time this bus stops for passengers.” I continued to treat it this way throughout my experience. Understanding that I didn’t have to be permanent host—that it didn’t have to stay on my bus—was critical.

Between Chemo and Surgery

Waiting for surgery is tough for many people. Overall I had a couple of months to prepare, and surgery didn’t really become a checkmark on the calendar until the second round of chemo was completed, at which point the only thing I had in front of me was surgery, so there we go. At that point the waiting game began again for three weeks. Silent meditation. Relaxation tapes. Clearing the mind. The central principle continued to be “not to worry.” Howard Rheingold (who also runs a cancer blog based on his own experience) says, “Don’t pre-worry things.” There’s a waiting period following chemo before you can get into surgery — to let the body recover, because the chemotherapy is designed to disrupt fast-multiplying cells (cancers), but it also disrupts a lot of normal body functions (hair growth, digestion, taste, maybe hearing). So you have to wait for these systems to recover before you go into surgery—because surgery is going to tax your body greatly. I focused on my bus imagery quite a bit during this time. I also felt that the chemo had put down the cancer, which made me optimistic about surgery.

After Radical Cystectomy (Surgery)

Comin’ out of the operating room. What an interesting experience in the recovery room. Like a movie with unexpected cuts. Someone would stand at the foot of the bed asking me a question, which I’d answer and in an instant there would be a “cut” and they’d be up by my head. Anesthesia playing tricks on perception and memory. I enjoyed this period and how it played with my perceptions.

This reminds me that following my TURBT (in May) I had 24 hours under observation in the hospital, during which I slept not a moment. My perception in the recovery room that time was similar—there were “cuts” in consciousness and dropouts of memory. The sleeplessness continued for me for more than two days in that case. It permitted me many hours of silent meditative practice.
I’m writing this at S+20 (surgery plus 20 days). Drain plugs and tubes were removed last week, and the catheter was removed today. I’ve been quite surprised at how little pain there is associated with the surgery itself. I had lots of gas and bowel pain initially as the gut restarted the digestive process, but no pain I could associate with the removal of the bladder. Neobladder as a procedure takes a portion of the intestine and repurposes it as a container, feeding urine into one end and draining it from the other end to exit the body “normally” through the urethra. The surgical incision was glued, not sutured or stapled. There was a drain tube for 14 days. A catheter remains for three weeks. (Um, really only read this if you can handle it… Gore and surgical details. )

The pathologists’s report was all good. The cancer had not spread beyond the muscle of the bladder. None of the lymph nodes stripped during the surgery (59 of them) had any cancer. The cancerous lesion was only half a cm in size, which is smaller than CT scans had been leading us to think. These are the best possible outcomes after this surgery. It seems to me the chemo and other treatment worked. The surgery was successful.

My surgeon came into the examining room this morning saying “How’s my star patient?” What a laugh, and I loved it. She told me that I’ll have follow up visits, and a CT scan periodically, and that cancer could return, but for the time being there is no evidence of disease.

Having gone through all of this, I have experienced and learned a lot. I now have a neobladder, and starting this week I am training it to handle a normal load. There’s no easy user manual in six languages. These are one of a kind. Though the surgery was successful, and the pathologist’s report would suggest no cancer remains, there still could be a recurrence in the future, so it’ll require constant watching. A new chapter begins.

[Read more about the cancer journey]

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• Became well-acquainted with fellow-travelers in the PSD program. They are all good composers, and going on this journey with them was an honor for me, as I came in the least prepared of them all.
• “Held my own” in terms of being able to write tolerable music for the assignments. Well maybe with the exception of one or two pieces where I started out pretty well and went downhill.
• Learned that I have a lot more to learn about “music theory” — which isn’t really a theory at all.
• Learned a boatload about using instruments I had never written for, even in my dreams. Strings, brass, and even a little about percussion.
• Learned I can’t hear high frequencies well enough to be a mixerman. (The Mixerman story is a blast—read it.)

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