Very techie here… For a few months I’ve been operating a packet radio station on a 2-meter radio frequency here in the San Francisco Bay Area. I explored what it would take to make this a full “BBS” (like an online “forum”), and then backed off and let it just hang around n this frequency listening to the other (mostly BBS) stations. A few days ago, I got interested in graphing the data to better understand what stations were using the frequency and when.

The chart is made by this process:

• JNOS (the software that runs the packet radio station) logs all data it hears on the radio;
• A Python script analyzes this log file, keeping track of what stations were heard in each hour;
• The Python creates javascript data in a form acceptable to Google Charts;
• The javascript is transferred to a web server;
• PHP code reads the javascript and inserts it in an HTML page;
• Google Charts javascript fashions the data into the interactive chart.

A “cron” job carries out this process once each hour to keep the chart data current. Because each data bucket spans a whole hour, there’s no need to update more than once an hour.

The post Visualizing packet traffic appeared first on Sky's Blog.

Does that sound odd? First of all, what’s a phone for if you don’t answer it? But second, who answers the phone any more, given the overwhelming volume of spam calls we receive every day?

You’re probably thinking “Why is he even asking this? When was the last time I answered a phone call?”

Why do I say I had to answer my phone? Well, I had called a US government agency in order to set up an appointment at that government office. First, I waited on hold for 50 minutes trying to reach them. They have no “local” phone number here in San Francisco, only a big national call center. So to make a local appointment, you have to reach the call center, which means waiting 50 minutes. Then talking with them, they agreed it made the best sense to go to the local office. “We’ll give you a callback to schedule that appointment.” Huh? I wait for 50 minutes and then they can’t make an appointment, they have to call me back?

“So what’s the best time to reach you?” “Well,” I answer, “Daytime. Nighttime. Anytime. I don’t care.” And they respond “We can’t do that. We need a one-hour window. We will attempt to call you during that one hour window some time during the next five days.” In other words, they pick a single hour during which I have to answer my phone for possibly five days in a row. Well how hard would it be for them to just call me whenever they have an agent available? Like maybe on Tuesday. Nope. Instead they have to use one single hour of the day, but any time in the next five days.

(This is worse than waiting for the cable company to fix my equipment. At least they tell me what day they’ll be here.)

OK, I thought that was bade enough, but… they won’t tell me what number they will call from. They’ll just call from some random phone number. Meaning that during my availability times I have to answer every call that comes in — something I never do because of the volume of spam calls.

So I tried it because I had no alternative. During my first day of availability, during my “best time to call me hour,” I got a call in the first 4 minutes. Spam. Of course. Then after 20 minutes, another. Spam again. And so forth. During the four hours I answered calls that day, I got a dozen calls. All spam. Yes 12 spam calls. No real people at all.

It occurred to me that actually I hardly ever answer my phone any more unless the caller is in my address book. And that in trying to schedule things, I actually never call people on my phone. Instead I email them or “text message” them. And, in fact, email is increasingly going unanswered by my friends. The only way to really reach someone is to message them. I know this has happened with the younger generation, but now I find it extending up into people in their 70s.

So my question is — and you can just think about this if you want to — no need to really answer: 1. Do you still answer your phone (if the caller isn’t in your address book); 2. When did you stop?

If you do answer, I probably won’t answer your call. Hahahah. Just think about how your own behavior has changed.

The post When did you stop answering your phone? appeared first on Sky's Blog.

There’s a T.I. Speak-&-Spell device from 1980. And among the buried treasure — actual physical copies of many of our DesignWare products for personal computers in the 1980s. I also found a box of goodies from a company I helped form that went bust in 1997. And another box of desk goodies from Knowledge Universe Interactive Studio, 1999. And two boxes of Leapfrog toys from year 2000. Most of these still function.

But also, in cleaning that space today, I found this on the floor. From historical documents it appears to be vintage 1980-1985. I remember the old punched-out tokens, but this one doesn’t have the “Y” punchout. I don’t know it’s provenance, although I was in New York many times in the early 1980s, working with publishers and media companies. So it may have been in my pocket upon return to San Francisco from one of those trips. But, of course, it never made it into a final turnstyle, and never will again, as the MetroCard entirely took over as the currency for transit fares in 2003.

I’ll add this token to my storehouse of RFID cards (which includes a paper MetroCard from 2018).

And this token is still “GOOD FOR ONE FARE” on the memory train!

The post Clean out your Basement appeared first on Sky's Blog.

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…

The post Copyright Dispute Humor appeared first on Sky's Blog.

Why am I bothering to write about this? Well, I’d like to encourage you to walk, or run, or whatever, until you also wear out your shoes. I put in about 10k (mostly in the city) every Saturday and the same on Sunday. It keeps me energetic. Clears the head. Musses up the hair. Makes me thirsty. Is actually relaxing. Feels really great.

Red7 home page

The post Wear ’em Down appeared first on Sky's Blog.

The Federal Communications Commission [FCC] in the United States has voted to nullify the common carrier status of ISPs, and thus to kill net neutrality, but of course other nations may not do so and I think there are customer actions that could make it difficult for carriers to run roughshod over this principle. The FCC calls their own action “Restoring Internet Freedom” and I, along with millions of others, contend that it’s only restoring the freedom for carriers to differentiate and prioritize, and charge as they see fit, making it more difficult for us common folks in the long run.

On the positive side, improved and more timely data service seems really attractive. People want it. Faster and stutter-free movies. Voice-over-IP calls without interruptions. Gaming and hugely-fast downloads. So there is actually some consumer pressure to prioritize.

Personally I think most of this is “entertainment motivated” in that the customers who care will be mostly the “consumers” — not businesses and not nonprofits. That’s because even if ISPs charge businesses more for these premium prioritized services, the big businesses will pony up and pay for it. Small businesses and individuals will be less able to do this, and that’s a big part of the problem.

So here’s how I think things will play out:

Advertising — The first thing that’ll happen, and it will be soon, though it’s not specifically limited by net neutrality, is that ISPs will look at your web usage and keep track of the sites you visit. They’ll make money by selling this data to third parties. Are you visiting Amazon.com a lot? You’re probably shopping. Are you visiting REI.com a lot? You’re shopping for outdoor gear. Visting Toyota.com a lot? Shopping for a new car. This kind of information is of great use and worth money to retailers, advertisers, car manufacturers. This kind of data is already commercially shared from web sites to advertising networks, but when ISPs can gather and sell this information, they’ll make money from it. And what’s more, ISPs can collect the data without your knowledge, and without leaving any evidence that they are doing so. Other web sites and advertisers do not have that advantage.

An ISP can also sniff the content of your (unencrypted) email, or your file downloads, which is something a web site cannot do. In other words, the ISP can create an open book full of information it can sell, because it is capable of monitoring every unencrypted communication you make through its connection. You may know that Google’s gmail can sniff your gmail traffic and will present advertising based on the contents of your mail — the ISPs would be able to do this regardless of where your email is held, if the connections are unencrypted.

The Let’s Encrypt project, which has ramped up mightily in the past year, aims to make it easier to protect traffic between you and the web sites you use, by making web site content unreadable by ISPs. The ISPs can still see which sites you use and how long you’re using each site, but when a web site is encrypted (HTTPS) the ISP can’t see which pages you’re viewing, nor what content you’ve viewed or submitted. (And you can also protect all of your network traffic from your ISP using a VPN, which I’ll discuss later.)

So here’s how I think this is all going to play out over a time period of one to three years (2018 to 2020):

The Inspection Scenario — To shape and prioritize your traffic, the ISP wants to understand (and prioritize) the type of data packets you’re sending. In theory and as far as the technology is concerned, all packets are just binary data, but in practice an ISP can look inside those packets (see deep packet inspection) and make conjectures about which ones are video, or audio, or gaming, or file transfers, and could treat them differently. Such as giving them higher or lower priority. Or charging more for some kinds of data. And because the carrier knows where your packets are going (meaning Disney, or YouTube or Netflix), it can differentiate and then prioritize based on financial agreements it may have (or interests) in those endpoints. So I predict that ISPs, who already have the capability to examine content, will be differentiating in some way based on your content as early as 2018.

Premium Services Plan — If the network manager has the capacity to examine your data, it could charge more for certain types of data — for the data that has more value to you. In other words, the carrier might “take a cut” of the economic value of the packets. This would be a lot like your phone company charging you more money to call a bank than to call a barbershop. Doesn’t happen to phone calls because the phone company (in the US) is a common carrier and regulated thus by the FCC. But that’s what Net Neutrality did for data carriers — and that’s now been rescinded by the FCC. I predict that ISPs will announce premium pricing for some types of content by 2019 — starting with voice-over-IP or video — and will promise to prioritize such types of traffic, for that price.

Transfer of costs to the supplier — Using a process we call zero-rating, an ISP may make certain types of content effectively free to its customers. They could make web access free, but inject advertising. They could make music “free” as T-Mobile has (meaning certain sites are free). Or throttle the delivery of (low-quality) video as Verizon has. Zero-rating has the effect of making other content more expensive, and of excluding content or providers based on criteria invisible to the customer. I predict that during 2018 more ISPs will first offer to accelerate certain content (such as video) for a price to the customer, then begin soliciting suppliers themselves to underwrite this, and eventually contend that this saves the end user from having to bear this cost.

Premium Sites Plan — The network manager could also charge customers more, or give more reliable or faster service, for traffic from specific providers. “Get your Disney movies faster and without glitches – $19.95 a month” is what I’d expect to hear within a few years. This would be done by prioritizing all traffic from Disney to you. Or any set of providers. Web sites. Email. And so forth. Any service the ISP thinks it can charge extra for, it will. I predict that by 2019 we will see Top-100 Premium Sites Plans from ISPs. Something that would have been illegal under the Obama-era FCC rules of net neutrality.

HTTPS (web) encryption — We’ve already reached the point where around half of web sites use HTTPS encryption to keep pages and submitted forms private. This will increase to 90% by 2020 and will frustrate the ISPs ability to look inside your interaction with these web sites.

Encrypted email — Here I’m pessimistic. People using standalone email, such as Apple Mail or Entourage, Outlook, Thunderbird apps on computers, have had encryption available for 20 years, though it hasn’t been easy to use until the last year or two. I predict email encryption will only slightly increase by 2020. However, more and more customers use outlook.com and gmail.com and services that use HTTPS encryption on their webmail interfaces, which renders email contents opaque to ISPs. This is a mitigating factor that will continue to improve the privacy of email, except that the email hosting company can, of course, still read your mail.

The Resistance — How could you prevent this kind of predatory behavior? Well even today, you could use a Virtual Private Network [VPN] to encrypt everything between your computer and the net. The encrypted packets are tunneled to another location (beyond your ISP), where they emerge onto the public Internet. For example, if you’re in San Francisco using “BigBad ISP” as your ISP, your computer might encrypt everything and send it to New York City, where it might emerge on a “GoodGuy ISP” network. BigBadISP would lose the ability to examine your data, and consequently could only charge you one rate for all traffic. That wouldn’t prohibit GoodGuy from doing something on its end, of course, but presumably you’d choose to emerge in friendly territory. I predict that by 2018 VPNs will be used by 20% of individuals and that ISPs will discourage their use by limiting VPN traffic. I predict that by 2019 ISPs will differentially charge more for VPN traffic from non-business customers or will require that customers upgrade to more expensive business or “Pro” plans in order to use a VPN. And I think that by 2020 ISPs will block VPN traffic from consumer accounts.

Higher Priced Privacy — And with VPNs blocked, ISPs will offer “Privacy services” for an additional price. In other words, if your ISP can’t see and make money off your traffic, they’ll charge you more to pay for the difference.

So the bottom line here is that businesses are in the business of making money by offering services. ISPs have offered connectivity for many years. That connectivity was priced initially based on bandwidth, then on data volume (particularly for mobile data), and now ISPs want to price their service on the value of the data. They’ll attempt to charge both their customers and the businesses who want to interact with their customers. They’ll offer “prioritized” services for an extra fee where there was no fee before. They’ll throttle services that don’t comply.

Because they can inspect customer behavior and data, they’ll profit by monetizing the value of the information about their own consumer customers. If that becomes difficult because of encryption, they’ll charge the customer an extra fee to protect his own data, under the guise that this is an improvement.

Net neutrality, and its interpretation under law, has largely protected consumers from this scenario for years. Now you have my predictions about how it could all unravel in just a few years.

The post After Net Neutrality appeared first on Sky's Blog.

The Role of the ISP — Individuals and companies who have their own networks interconnect those nets by plugging in through Internet Service Providers [ISPs]. And in turn, each ISP is linked to “upstream” network providers, and through those to a group of very large carriers who form what’s called the Internet backbone. It’s not just a two-dimensional backbone, but itself is a distributed network of very-high-speed carriers with real-world physical interconnection points. There are many possible routes from an end user to another end user through this backbone. The big providers do what is called peering at these interchange points, where they are all peers, handing off traffic from one to the other with the flow based, of course, on how much traffic is going in any given direction, but otherwise “equally” in terms of priority.

There is, of course, nothing to prevent companies from creating their own private networks to route their traffic faster or more directly than the Internet can route it, but the flexibility and particularly the ubiquity of the Internet makes it ferociously attractive even for private data exchanges.

Each ISP collects fees from its customers, and it then purchases its upstream connections (meaning connections “closer to the backbone”), paying more or less based on the bandwidth of those connections. That’s how upstream ISPs make their money. And they pay the backbone providers for connections. And so forth.

Bandwidth — From the earliest days of the Internet, ISPs have provided service based primarily on the bandwidth (bits per seconds) provided to customers.

In the 1980s, a regular guy like me might buy dial-up service, which could run at maybe 1,200 bits per second [bps]. My blue graph illustrates relative speeds from dial-up on the bottom to T1 dedicated service on the top. Dial-up services (which includes ISDN)  reached higher speeds with better equipment (called modems – which connected a computer to a phone line). Even higher speeds could be achieved with dedicated lines rather than dial-up. ISDN reached 64,000 bps, but required two dedicated pairs of copper wires. The “T1” line, spoken of in hushed reverent tones in the 1990s, was a repurposing of the phone company’s internal T1 lines, which bundled 24 basic lines together into a single channel at about 1.5 million bits per second [mbps].

As digital services proliferated, the T1 became less useful, with DSL and ADSL speeds several times faster, and consumer cable Internet going up to nearly 80 mbps at the fast end of that spectrum. My red graph shows the T1 at the bottom end of the data services at 1.5mbps, and cable Internet at the top with around 80mbps. There are also fibre services where the speed of cable is kind of the low starting point, and service may reach 1,000 mbps (1gbps) at the top end.

Ah, but my point is that ISPs used to really sell bandwidth and your monthly price would be linked to the speed of your connection to your ISP.

• If you multiply out the bandwidth times the number of seconds a month, it would give you a theoretical maximum amount of data your ISP might be carrying in a time period. A phone line running at 1,200 bps would carry a max of about 30 billion bits (about 3 gigabytes) in a month, for example, though typically you’d be using only a fraction of that.
• As data services developed, businesses bought “T1” and higher-speed lines from their ISPs. Today’s DSL services at 6 mbps theoretically could carry about 15 terabytes [TB] in a month (15,000 gigabytes). And consumer cable data services could carry more than 10 times that amount of data, or more than 200 TB in a month.

Bandwidth and Capacity — As with any network that carries traffic — think interstate roadways, for example — a network is built with enough capacity to handle only a small percentage of the total possible traffic. Otherwise, the vast majority of routes would remain almost empty most of the time.

Engineering a Network’s Capacity — So there’s an “engineering” problem that always has to be solved — deciding how much capacity to actually build or turn on (to “provision”). (But look up the term dark fibre sometime if you want to know more.) Carriers need to be able to handle realistic peak traffic, but not maintain excess and therefore unused capacity.

Managing Network Traffic — And when a network gets close to capacity, the network manager wants to manage traffic in some way to avoid complete gridlock. In fact, large network managers claim that this is the primary reason to eliminate net neutrality – because they claim it hampers their ability to shape traffic when it peaks.

Why Limited Bandwidth and Net Neutrality are enemies — So carriers want to be able to prioritize (”shape”) traffic (and presumably charge someone more for priority traffic). Makes sense, huh? If the network is clogged, wouldn’t you as customer want your real-time video or audio calls to get through. And wouldn’t you agree to postpone delivery of spam, or delivery of traffic that’s not time-critical? That’s the genesis of the term Quality of Service [QoS], which deals with finding ways to ensure the delivery of high-value communications. But the question is who sets the priorities. Certainly one user would like to prioritize his video or audio. And another might prioritize her online real-time gaming. So here is the one crucial sentence in my argument:

In other words, to belabor my point, if there were no principle of net neutrality the carrier could prioritize and give more timely delivery to the prioritized traffic.

And to belabor my further point, if prioritization is allowed, carriers can and will charge more for it, will make special rules that benefit themselves (and their associated companies and services), and will begin restricting other traffic. This is the origin of today’s whole hullabaloo about net neutrality. (And with which I am in agreement, as you can see.)

So in a nutshell, this is why carriers don’t like net neutrality:

1. ISPs and other carriers already build out (or “provision”) less capacity than they sell to their users. For statistical reasons, this generally works out just fine.
2. They have to carefully engineer their capacity, and when it fills up, net neutrality (all bits being the same) leads to all traffic, including videos, audio, and real-time communications, get gummed up.
3. They would prefer to be able to de-prioritize some traffic so the special traffic could get through the jams, but net neutrality prevents this. (They’d also like to charge more for this special traffic.)
4. They could build out more capacity, or could “light up” unused lines, to relieve the problem, but that costs them more.
5. Therefore carriers in general will argue against net neutrality.

This leads me to predict some pretty clear scenarios for the future — some Post- Net Neutrality scenarios. You can envision your own, then read on in my next article.

The post Net Neutrality — The Issue is Bandwidth appeared first on Sky's Blog.

Net Neutrality — Its core is that 1. all bits/packets on the Internet have equal priority; and 2. all endpoints on the Internet are interconnected and traffic is accepted and delivered without prejudice to and from each and all of these endpoints.

The network operators (as data carriers) find better and better ways to carry traffic faster and cheaper (and perhaps more profitably overall), but to date it has been Internet pioneers, entrepreneurs, commerce, media, news and online services who have created new uses of this Internet platform, not the traffic carriers themselves.

The opponents of net neutrality want to eliminate the neutrality principles.

They tell us this is so the carriers can innovate and develop new services, and better manage their own networks. I’d say there’s some value in the management issue, but since the 1990s, carriers have been developing new capabilities, higher speeds, and the ability to handle more traffic even with net neutrality in place. What the elimination of net neutrality would allow them to do is charge based on type or origin of traffic — in other words, the carriers would presumably charge more for traffic that’s more valuable to the user, participating more directly in the profitability of every new service innovated by any entrepreneur. And also “calling the shots” on which services may have to pay the carriers more to prioritize, or even handle their type of traffic in the first place.

How do I know this? From conversations and news reports in the mid-1990s.

Net Neutrality has, so far, prohibited this kind of behavior and left the networks as essentially common carriers carrying all data without discrimination.

Legislation and the Internet — Legislation passed in the US, or China, or Iran or Brazil has localized effect for the most part. But legislation in the US, in the case of neutrality at least, will affect vast amounts of global Internet traffic, and the elimination of Net Neutrality in US law, followed by its elimination in practice by network managers, will have global effects.

Political Questions — This is not a “political” question. It is an economic question. Carriers would like to benefit more from the data they carry — currently they carry all traffic uniformly regardless of its content or economic value. Every bit costs the same as the next bit to carry, though some services use more bits. But financial data doesn’t cost any more to carry bit-for-bit than a Disney movie. Although Dems and GOP in Congress are coming down on pro- and con- sides of Net Neutrality, in real life it affects all of us equally. Seeing that Dems are more pro-neutrality, they are attempting to save neutrality which will benefit Republicans every bit as much. The political arguments are really based on taking sides for or against the large network operators, and for or against live citizens.

Why it’s Important — Neutrality permits netizens to build platforms (software, hardware) without regard for whether their traffic will be speeded, blocked or slowed by communication providers. That’s just it in a nutshell. It has been an essential part of net life for many years.

It also permits “anyone” to connect to the net. There are no special fees based on type of business or type of content. Instead they’re based on volume or speed. Fairly and equally. Some content may be blocked legally, but this is rather narrow in scope, and is determined in law, not by network carriers.

As a fundamental principle of the Internet, Net Neutrality is essential to openness and innovation.

The post Net Neutrality — Introduction and overview appeared first on Sky's Blog.

The post The Time-Machine Queen appeared first on Sky's Blog.

I’ve already remarked on some predictions I made in 1973, including working from home, email, co-working spaces and online community access to information and learning. There were a lot of people working on these concepts in the 1970s. Many people had these and similar ideas, and much of the work presaged today’s online educational and social media. My personal focus was on communication in education, and my work involved using a supercomputer (and later a minicomputer) as a hub for education and distance-independent group communication.

Notable among those I interacted with

Community computing—People’s Computing Company (Bob Albrecht) in Menlo Park. Resource One (Lee Felsenstein) on Howard in San Francisco. Whole Earth Store (Rich Green) in Evanston (and Berkeley).

Computer conferencing—Murray Turoff (New Jersey Institute of Technology and formerly the Office of Emergency Preparedness). NSF project managers.

Networks—Doug Engelbart and team (Stanford Research Institute, SRI). I was at Doug’s lab he day they connected to the “Arpanet.”

(There’s a whole additional thread of people who worked in computer-based-education, which I’ll write up later.)

Resource One

The post Community Computing in the 1970s appeared first on Sky's Blog.

295 is just over 183mph, for those who don’t work in metric. I have hit 185mph/300kph on previous trips. Some small airplanes fly slower than this.

The post 295 appeared first on Sky's Blog.

“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.)

[soundcloud url=”https://api.soundcloud.com/playlists/234883930″ params=”auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false&visual=true” width=”100%” height=”450″ iframe=”true” /]

[soundcloud url=”https://api.soundcloud.com/playlists/132507989″ params=”auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false&visual=true” width=”100%” height=”450″ iframe=”true” /]

The post Happy New Year appeared first on Sky's Blog.

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.

[soundcloud url=”https://api.soundcloud.com/playlists/234883930″ params=”auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false&visual=true” width=”100%” height=”450″ iframe=”true” /]

The post Bringing Meaning to Light appeared first on Sky's Blog.

First, my head was cold. San Francisco summer weather is cold anyway, but wow was my head cold! So I got out Kathryn’s Angel Island baseball hat and it has been my constant companion for several months. About a week ago I noticed it was feeling too hot—perhaps a sign that hair was growing back.

Second, people didn’t recognize me. Doesn’t surprise me that many people would recognize my mop of stark-white hair as synonymous with me. Walking down the street, folks might glance at me and then walk on without a glimmer of recognition. This was particularly true when I had the baseball hat on.

Now to the debate. I think this look is kind of a Bruce Willis look before he was shaving it. Think 1990s. I do not think it’s current. Current would imply that I need a 3-day growth of beard.

What do you think?

[More about the cancer journey]

The post The Brutalist Sky Look appeared first on Sky's Blog.

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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