September 2011 archive

The Frustration of Breast Cancer: Dealing With Hypotheticals And Going On Faith

Lori perkinscove sept2011 300

No question perhaps highlights the frustration of breast cancer than the one I am frequently asked:

So how is Lori doing?

You see... physically she is doing perfectly fine.

At least... she has been doing perfectly fine up until today when they will inject her with various noxious, toxic chemicals to make her worse so that in the end she will theoretically be better.

This is the conundrum of early stage breast cancer.

There are no physical signs.

You are not "sick" in any noticeable way.

You feel perfectly fine.

In fact, my wife is probably in the best physical shape she's ever been in. She's walking 5-6 miles a day and just in great shape all around.

Physically.

You would have no clue that inside her MAY lurk a few random cells that can morph and evolve in such a way that they can cause other problems and even death.

It would be much easier in so many ways if she was sick in some way. With some other forms of cancer, the pain and sickness are very apparent.

You are sick... therefore you need drugs and other treatments to make you better.
Simple. Easy.

But with early stage breast cancer you have no signs.

You are dealing entirely with hypothetical situations.

The studies say that you have a 60% chance of not having cancer after 10 years if you do this.

The studies say that you have a 70% chance of not having cancer after 10 years if you do this.

The studies say that you have a 90% chance of not having cancer after 10 years if you do this.

With again the reality that

you might not have any cancer in you today...

... if only we had some way to know.

But we don't.

And so, as a friend said to me this morning, we are "going on faith".

Faith in the medical system. Faith in the doctors and nurses who have been treating her - and all the research and analysis they have done. Faith in the scientists who have performed all these studies and spent the long hours in their research. Faith in the accuracy of the very human people who have been administering all these fancy tests - and in the designers behind all the software and systems.

Faith in the fact that this course of treatment that will make her very sick in the short term will give her better chances in the long-term.

Going on faith.

It's insanely frustrating, but in the end it's all we have...

And So The Waiting Ends – With Chemo…

Purgatory

Well, at least we have an answer. We are no longer stuck in limbo.

The results of the testing I mentioned in my last post on my wife's tumor came back... and unfortunately not with the results we'd hoped for. It turned out that her tumor was slightly more on the aggressive side... and that they best they could estimate was that if she did nothing more there is only a 60% chance she'll be cancer-free in 10 years.

She's only 43 years old... 10 years is not a long time.

... and 60% is not really a great percentage.

So after much discussion and research she begins a four-month round of chemotherapy tomorrow, which will then be followed by five years of a hormone therapy once the chemo is done in December.

In theory, the hell we are about to endure for the next few months plus the five years of daily Tamoxifen will together raise the chance of her remaining cancer-free to over 90% at the end of ten years.

90% vs 60% ... not hard to argue with those stats.

But of course the irony continues to be that she could be cancer-free right now... and won't need the hellacious drugs, fatigue, sickness, hair loss and other horrible side effects.

But we have no way of knowing...

And so it begins...

Image credit: M.Markus on Flickr

The Uncomfortable Awkwardness of Mark Zuckerberg’s Keynote

F8 zuckerbergI cringed a lot yesterday. It was a bit painful at times to watch Mark Zuckerberg's keynote presentation at Facebook's F8 conference yesterday.

Regarding the keynote, much is being written now about Facebook's new (and very cool) Timeline feature and about how the OpenGraph API encourages further sharing.

All that is very cool... but for me I found Zuckerberg's keynote interesting more in the human side.

In how it didn't work.

Zuckerberg made attempts at jokes... and at least on the live stream there was often no response - or at best a small smattering of applause.

More attempts. More crickets.

Awkward pauses at times when perhaps he thought there might be some reaction.

Over-repetition of key phrases perhaps because someone had coached him that he needed to say those phrases again.

It was all very... human.

Mark Zuckerberg has never pretended to be an amazing public speaker. He's an engineer... a techie... a geek. MUCH more comfortable talking about the details of some of the features than in making the jokes and surrounding contextual conversation ... or trying to connect with the audience.

And he's 27 years old.

And he was speaking to an audience of over 100,000 viewers of the live stream, X-thousand people at the F8 conference and through news and replays out to the millions of people who care about Facebook.

Just a wee bit of pressure. :-)

As a public speaker, I unfortunately can't usually sit back and just listen to a presentation... it's an inherent part of what I do that I'm always watching other speakers - listening to how they speak, watching how they move, listening to the words they use, looking at how they interact with the audience... just watching with a critical eye because that is how you become a better speaker.

And so I watched... and cringed when things didn't go the way he perhaps hoped.

We've all been there... sometimes presentations don't work the way you think they will. Jokes fall flat. Pictures don't resonate. Audiences don't interact. And it's all very well for me to sit here and comment... but I wasn't on the stage where he was... under the pressure he was...

In the end, the people watching were there to hear how Facebook was going to dramatically change the way people can interact with the site... and they got that info. Zuckerberg gave the demos, introduced the new features... all went well on that front.

And if Zuckerberg's stage presence seemed strained or awkward at times, it is perhaps a sign of his newness to this global stage upon which he finds himself. I respect him for getting out there and being that very public face of his company (as if he really had any choice). We're obviously only seeing the beginning of what Mark Zuckerberg will do in our communications industry... it will continue to be interesting to see where he goes - and indeed how he grows into presenting over the years ahead.


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Why Klout Gets a FAIL For Their Notification Emails

These email notifications from Klout get a big, fat FAIL in my book:

Kloutnotifications

I should NEVER be REQUIRED to go back to your website to get notifications about your service.

You have already interrupted my life by sending me an email. Now you want me to further interrupt my life to go to your website to see whatever brilliant piece of information you want to share with me?

FAIL

This is a classic mistake by new services. They want to get people to come back to their website. Once users go to their website, the service can then track the users' usage and also try to entice them to go into other areas of the service.

It may work for some services... but for many others it just services to piss off users. They may just ignore your email messages and your services... they may mark your email as "spam"... or they may write cranky blog posts like this one.

Here is a request to all the zillion new social services out there:

RESPECT MY TIME!

If you want me to use your service... and more importantly, if you want me to be a happy user of your service and promote it to other people, then follow this one simple step:

RESPECT MY TIME!

Send me a notification email WITH THE MESSAGE INCLUDED.

Facebook does this.

Twitter does this.

Google+ does this.

LinkedIn does this. (although I seem to recall they didn't at first, but that was years ago)

Every service should do this.

Don't make me go back to your website.

Respect my time.

Maybe I'll use your service more.... maybe I'll click back to your web site and respond or take other action. And yes, it might be a little less trackable... but you'll have happier users. (And people like me won't write cranky blog posts like this one. :-) )

How Meta Can You Get? A Blog Spam Comment About Spam

/doh
Loved checking my email this morning and seeing this comment submitted to one of my posts on this blog:
Can you recommend a blog comment anti-span service? I've basically abandoned my blog because of all the comment spam.

The comment was, of course, spam!

The "name" of the commentor was "buy _____" (I'm not going to give them the dignity of saying what the product was), and the URL was a completely spammy URL.

You wonder if the person/people behind it understand the irony and are just out there somewhere chuckling wondering how many sites will actually post their comment as a legitimate comment...

P.S. And unfortunately TypePad did go ahead and publish this comment despite the spammy name and URL and so I had to remove the comment...


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Skype for iOS/iPhone Vulnerable to Cross-Site-Scripting (XSS) Attack

News from the SUPEREVR security blog is that Skype for iOS is vulnerable to a cross-site scripting (XSS) attack that allows an attacker to send someone a message and, for instance, capture that user’s address book from their iPhone.

The author of the article posted a video that demonstrates the attack:

He further states in a tweet that he notified Skype of the vulnerability on August 24th:

In case anyone is wondering, I disclosed the vulnerability to Skype on 8/24. I was told an update would be released early this month.

Skype has issued a statement through their PR firm:

We are working hard to fix this reported issue in our next planned release which we hope to roll out imminently. In the meantime, we always recommend people exercise caution in only accepting friend requests from people they know and practice common sense Internet security as always.

Skype’s mitigation recommendation is a good one as the default privacy setting is typically that you can only receive chat messages from people on your Contact list. Therefore, the attacker would have to be someone who you have authorized and added to your contact list.

Meanwhile, hopefully Skype will be out with their update soon.

P.S. Hat tip to Tom Keating for writing about this exploit as that was where I first learned of it.

Final Day of the 2011 FIR Listener Survey – Help Us Guide The Show!

Do you listen to the For Immediate Release Podcast? If so, do you have a few minutes to take the FIR listener survey if you haven't already done so?

The survey is a very important tool to help Shel and Neville (and by extension, we who are correspondents) shape the future of the FIR podcast. The feedback IS highly valued and much appreciated.

THE 2011 FIR LISTENER SURVEY CLOSES AT MIDNIGHT GMT ON SEPTEMBER 20!

So please, if you have a few minutes, help us out and complete the survey!

P.S. And if you are not an FIR listener but are interested in social media, why not give it a try now? Each week there is an hour-long show plus sometimes other interviews and book reviews. I'm always learning something new from all the great content!

Starting Work Today at the Internet Society

ISOC logo After some of my tweets today I had friends contacting me in great surprise asking if I had really left Voxeo.

Yes, to a certain degree of my own great surprise, I actually did.  

I started today (Sept 19, 2011) in a brand new role on a brand new project at the Internet Society, based in Reston, VA.  I'm still working remotely from my home office in Keene, NH, so that didn't (and won't) change.

The full story of my job change can be found over on my Disruptive Telephony blog.

And yes, with all the other chaos going on in my life, it probably wasn't the ideal time to make a job change... but is there ever really such a time?  And in fact I can say that to a certain degree my change is because of some of the perspective gained from that ongoing experience...

My FIR Report – Sept 19, 2011 – An Update on My Job Change And Content Strategy

My report into today's FIR episode #617 was a little different than my usual reports. Instead of an update on the latest technology and trends in social media, I gave a more personal update about my job change to work as Senior Content Strategist over at the Internet Society. Those who want the details can read the full blog post, but suffice it to say that I've moved from my role at Voxeo over to a more education-focused role at the Internet Society, a global nonprofit organization focused on the missing of promoting the "open Internet". My role will focus on the creation, curation, distribution and promotion of content related to that mission. While I'm definitely going to miss all the great folks and great work at Voxeo, I'm excited for this next chapter... I gave some more info in my report into today's FIR episode.

Next week, I'll return to my usual commentary on the intersection of social media and technology... :-)

Ch-changes – Taking A New Job At The Internet Society To Join The Fight For The Open Internet

In the end, my impending job change is perhaps best explained by two quotes: this prescient quote from the 1992 film Sneakers:

“There’s a war out there, old friend. A world war. And it’s not about who’s got the most bullets. It’s about who controls the information. What we see and hear, how we work, what we think… it’s all about the information!”

and this quote from poet Mary Oliver:

“Tell me, what is it you plan to do with your one wild and precious life?”

For a longer explanation, read on... but perhaps not on a mobile phone... this one's a bit on the lengthy side...

Bleeding "Voxeo Blue"

voxeologohoriz.pngJust shy of four years ago, I wrote here about joining this incredibly remarkable company, Voxeo, that probably none of you had ever heard of.

I hope I changed that a wee bit. :-)

Around a thousand blog posts later, a hundred videos, too many speaking engagements and webinars to count, many articles, a ton of analyst briefings and media interviews ... and countless tweets, Facebook posts and other updates later... it has been truly an amazing journey.

Along the way I have come to truly love the company - and I don't use that term lightly - and the incredible people who are gathered together focused on making Voxeo THE platform for developing and deploying communications applications. As I mentioned in a recent post, Voxeo is a rocketship, firing into the skies and leaving its competitors behind.

Over these four years, I have been living, breathing, eating, sleeping all things Voxeo... I have been proud to be a "Voxeon"... slice open my skin and it bleeds "Voxeo blue"...

The Larger Battle

And yet... I have never been able to escape the siren call of the larger battle going on all around us. It did not surprise me to find that the Voxeo blog in which I published the most posts is "Speaking of Standards". Listeners to my weekly reports into the FIR podcast have perhaps grown weary of my rants about "single points of failure" and the need for services that are "distributed and decentralized" that allow you to retain control over your information and content. Readers of my blogs have seen my many posts on the theme of "the open Internet".

We have before us a choice of futures.

One choice leads to a future where innovative companies like Voxeo can emerge, thrive, disrupt and succeed.

Another choice leads to a future where what little "innovation" there is exists only at the will of the gatekeepers to the network after appropriate requirements and/or payments are met. Other choices lead to outcomes somewhere in between those polarities.

How will we choose?

Walled Gardens, Redux

The Walled Garden (1)
I began my time online some 30 years ago in the 1980's era of the big "information services". CompuServe, AOL, Prodigy, Delphi, The Source, GENIE... and many other names that have long since faded into history.

People accustomed to the ubiquity of the Web today might find it hard to believe that once upon a time you could only get certain news, technical, financial, movie or sports info on the service to which you subscribed... that you could only communicate with people who had accounts on the same system as you.

It was the era of the proverbial "walled gardens"... where each service tried to keep the walls high enough and the content pretty enough that you would never leave.

The forces of "openness" were around, too. Academic networks like BITNET and JANET on the one end and home-grown networks of BBS's like FidoNet on the other, with other networks and things like UUCP and Usenet floating around as well.

And then came this "Internet", the one network to interconnect them all.

And out of that interconnection and interoperability came the world we live in today... out of that chaotic world of engineers and open standards came this network that is now no longer simply a research network but instead has become critical communication infrastructure... and a critical component of commerce.

And with that rise to prominence come all those who would seek to change the nature of the network... for perceived safety... for convenience... for profit... for control... for "security"...

So now we see services like Facebook, Google+, Twitter and more that seek to provide a nice pretty space in which you can exchange messages, photos and more... without ever leaving the confines of the service... they are a walled garden with just many ways to access the garden and to look over the walls.

Everyone wants to own your eyeballs... to host your content... to provide your identity...

And we see companies like Apple, Google and Microsoft seeking to control a large degree of how we connect to and use the mobile Internet...

And we see a change from "permissionless innovation" where anyone can set up a new service... to a model where you have ask permission or agree to certain "terms of service" in order to connect your new service to other services or to have your app available on some platforms...

And we see countries that want to throw up a wall around their citizens... sometimes to keep information from coming in... and sometimes to keep information from going out... and sometimes to be able to shut down all access...

And we see players who did control our communications systems always looking for opportunities where they could maybe, just maybe, stuff the proverbial genie back in the bottle and regain that control they lost...

It's a crazy time...

As one who has lived through our online evolution, and who in fact has been able to do what I do and to live where I live because of the "open Internet", I don't want to see us return into a fractured world of walled gardens.

We can make a different choice.

And So, A Choice

IsoclogoIn the midst of all this craziness exists a global nonprofit organization that many of you may not have heard of. It has a very simple mission:

to promote the open development, evolution, and use of the Internet for the benefit of all people throughout the world.

The Internet Society, or "ISOC" for short, exists to promote the idea that "the Internet is for everyone", where "everyone" includes people all around the world... and yes, it includes the corporations, service providers, governments and other organizations, too. To support that mission, ISOC undertakes a wide variety of education and policy initiatives around the world, all with the aim of fostering the growth of the open Internet. Local "chapters" of ISOC have sprouted up around the globe pursuing these initiatives at a local/regional level. Perhaps more relevant to many readers, ISOC is the organizational home of the Internet Engineering Task Force (IETF), the group that creates the RFCs and the open standards that describe how the Internet operates today. A significant amount of ISOC's focus is on facilitating the creation and promotion of these open standards. (For those curious to learn more, ISOC's 2010 Annual Report is available online.)

I was actually a dues-paying member of ISOC back in the early '90s, when each month I would read through their print magazine (very ironically, but this was pre-Web) "On The Internet" to learn more about how the Internet was evolving throughout the world. I rejoined again a year or two ago to help in some small way support this very important work. (You can join, too.)

And on this coming Monday, September 19th, I will join the Internet Society as a staff member.

The Missing Link

Missing Link
The particular project I will join within ISOC is a brand new initiative targeted at helping bridge the gap between the standards created within the IETF and the network operators and enterprises who are actually deploying networks and technologies based on those standards. To help translate those standards into operational guidance... to help people understand how to deploy those standards and why they should, what benefit they will see, etc

The initiative is currently called the "Deployment and Operationalization Hub", or "DO Hub", and while that may or may not be its final name, the idea is to find/curate content that is already out there created by others, create content where there are gaps, make it easy to distribute information about these resources... and promote the heck out of it so that people get connected to the resources that they need. The initial focus will be, somewhat predictably, on IPv6, but also DNSSEC and possibly another technology. It is a new project and the focus is being very deliberately kept tight to see how effective this can be,

My title will be Senior Content Strategist and my role will very much be about the creation, curation and distribution of information. Writing articles, reviewing resources, blogging, creating videos, screencasts, etc, Once we have the initial repository built out, there will be a phase next year where we will be out on the conference circuit talking about these technologies and helping people understand how they can get started... and continually adding even more content.

For a guy who loves teaching, writing and "demystifying emerging technology", it's kind of tailor-made. In fact, when ISOC approached me a few months ago with the job description, my wife and I both looked at each other and said "wow, that's me!"

In the end, the goal is to help make it as easy as possible to deploy and use open standards... so that we might wind up collectively making the choices that can lead to an open Internet where innovation can thrive.

I'll still be living in Keene, NH. (Many ISOC employees are remote.) I'll still be blogging in my various blogs. I'll still be speaking at conferences from time to time. I'll be back at IETF meetings again (which I'm VERY much looking forward to). None of that really changes with this move.

Every New Beginning Comes From...

..some other beginning's end. ("Closing Time", by Semisonic)

Leaving Voxeo was decidedly NOT an easy choice. I agonized over the decision for an insanely long time. I work with awesome people who I know I will miss, have been thoroughly enjoying what we are doing and have been looking forward to where the company is going... it has some amazing plans that will even further disrupt the industry!

Some will tell me that I am crazy... that Voxeo is the closest they've seen to a "sure thing"... that leaving is a dumb move.

They may be right.

And yet... recent events in my personal life have highlighted the fragility of our lives and the limited time we have - and the need to pursue one's passion.

And so it is that I end one beginning and start a new one... with the hope that in some small way the new work I do will help companies like Voxeo thrive - and indeed to help continue and expand the conditions that create companies like Voxeo.

We have a choice of futures before us...


Image credits: Gerry Balding, Thomas Gehrke on Flickr.