Just a guy in Vermont trying to connect all the dots...
Dan York
Author's posts
Aug 29
The Hellacious Purgatory of Waiting
Waiting sucks.
There is no other way to say it. More polite phrasings simply do not convey the correct emphasis. Waiting sucks.
And now... we wait.
Two weeks ago we visited my wife's oncologist to learn what would be the treatment options for her breast cancer now that the mastectomy was done. Naively, we thought based on what we had heard after the operation that all we would really be talking about was whether or not it made sense for her to start taking a hormone drug, Tamoxifen, for the next five years. There are some various medical history issues that raised some questions about that... so we thought our discussion would be about that.
The oncologist at our local hospital sat down with us for what turned out to be most of 2 hours. She walked us through my wife's pathology report and started out talking about all the positive aspects of the report... but with an unspoken "BUT..." hanging out there... until the "but" was spoken... and a word we thought we'd never hear was voiced:
"Chemo"
We figured with the tumor rather drastically removed (since the entire breast is gone) and the sentinel lymph node coming back clear, we were done with any thoughts of chemotherapy.
And we may be... or chemo may be back on the table.
Unfortunately, my wife's tumor turned out to be invasive breast cancer and as such there is a danger that it could spread into other parts of the body and morph into other forms of cancer. The "sentinel" lymph node was clear, meaning that there was no sign that cancer was regularly spreading into the rest of her body... BUT... there is always the chance that a small amount of the cancerous cells could have already spread into her body and not left any sign in the lymph nodes.
The oncologist had an interesting viewpoint:
My wife will never have as little cancer in her body as she does right now.
It took me a moment to wrap my brain around that one. The reality is that with the tumor gone and with the sentinel lymph node clear, odds are that IF any cancer made it out into the rest of the body it is only out there in a tiny amount - and has not yet started to attack other cells.
So now is the time to do everything possible to kill it.
Hence considering chemo as an option.
Of course, the insanely frustrating aspect of all of this is:
There may be ZERO cancer cells in my wife's body!
They may in fact have been completely removed with the tumor. But there is no way to know... and it comes down to what level of risk you want to assume and how comfortable you are playing the odds that the cancer is gone.
Hence the waiting.
They are doing another round of blood tests and actual tests on my wife's tumor, specifically an Oncotype DX test, to help provide more data to determine whether chemo would really help fight the specific cancer my wife had/has. It turns out that for a certain % of women, chemotherapy really isn't that effective, for a certain % it is very helpful, and another % is in the middle of those two sides.
Into which category does my wife fall?
For that we wait... "7-10 business days" is how long the test takes once they get her tumor... and while you are waiting that seems like an agonizingly long time.
And so we wait.
And wait.
Stuck in an unwelcome purgatory... unable to make concrete plans for the next few months... unable to understand what our future holds... paused in a limbo where life seems to be on hold - even while the everyday life around us must continue.
Just waiting for a call that says the test results are in and we can sit down and start to understand what comes next.
Waiting sucks.
And so we wait...
Image credits: mag3737 and 25182350@N03 on Flickr.
Aug 26
Can You Help With Data Collection For Hurricane Irene Crisis Response?
WOULD YOU LIKE TO HELP?
The CrisisCommons group now has a page up at:
http://wiki.crisiscommons.org/wiki/Hurricane_Irene
with information about how you can get more involved - see the "Open Data" block on the right side for current volunteer projects.
One such effort is a map of shelters and incidents that will evolve as shelters are set up - volunteers are needed to help put existing maps of shelters onto the map.
Another effort is media monitoring being done by Humanity Road.
The CrisisWiki is also gathering resources about Hurricane Irene.
If you aren't in one of the affected areas (where you may have much more direct things to worry about), all of these are great ways that you can help out from afar!
If you have some time to spare today or over the weekend, please check out the CrisisCommons page to learn how you can help!
If you found this post interesting or useful, please consider either:
- following me on Twitter;
- adding me to a circle on Google+;
- subscribing to my email newsletter; or
- subscribing to the RSS feed.
Aug 26
Video: How to Communicate at Burning Man using OpenBTS and Tropo
Heading to Burning Man this coming week? Would you like to use your mobile phone to connect up with others on the playa in Black Rock City?
If so, check out this video from Chris Pirillo about the work being done by a team of folks to supply local cell phone coverage... the vans with satellite and cell hookups are already enroute... it uses software from OpenBTS and Tropo.com to let burners leave each other voice messages, exchange SMS messages and more. Here's the video:
And here are some blog posts that provide more information:
- The Long and Winding Road to Burning Man
- Tropo + OpenBTS + Burning man = Awesome
- Voice Board and Group SMS for Burning Man
- Papa Legba FAQ (about the deployment at Burning Man and what you need to do to participate)
I'm not personally going to be at Burning Man, but this does sound very cool!
If you found this post interesting or useful, please consider either:
- following me on Twitter;
- adding me to a circle on Google+;
- subscribing to my email newsletter; or
- subscribing to the RSS feed
Aug 25
Running Over 400 Miles And Counting…
Not bad considering that my first full run was about a year ago, September 7, 2010, for a whopping total of 1.6 miles. Prior to that I'd mixed running and walking.
And I'm still incredibly amused by it all given that as I've mentioned before, I NEVER expected to be a "runner"!
Not in a million years.
Yet here I am. Not only enjoying running... but actually craving running and starting to get twitchy if I don't get a run in at least every other day.
Strange world.
I'd note, too, that this app didn't track all the running I did indoors on a treadmill over the winter. And there have been a couple of runs where the app malfunctioned... or where my iPhone ran out of battery power.
So my actual mileage is substantially higher.
But, hey, this is a good measure of my outdoor runs... and given that I'm running 15-20 miles a week now, I should be cruising through 500 miles fairly soon.
Fun stuff to track!
P.S. And if you don't believe that I wasn't a runner, read this post about how 40-year-old fat men can get up and run. :-)
Aug 25
Adhearsion (and AdhearsionConf) On Tomorrow’s VUC Call – Telephony Via Ruby
I've written about Adhearsion before and while I don't do much with Ruby myself, the power of Adhearsion to create powerful telephony apps in a few lines of code is pretty amazing.
If you'd like to join the VUC call live tomorrow, the info is:
- SIP: 200901@login.zipdx.com (works with wideband!)
- Skype: vuc.me
- Regular old PSTN phone: +15672522286
There's also a very active IRC backchannel (#vuc on free node) that provides another way to communicate during the call.
Aug 25
Thank you, Steve Jobs.
Go on, check it out... scroll down the Techmeme page... I've not honestly seen another day quite like this.
A zillion posts lionizing the man who, love him or hate him, has so disrupted multiple industries through his leadership of Apple. As Walt Mossberg wrote, Steve Jobs is very much still alive, but his resignation as CEO of Apple does indeed mark the end of an era. Tim Cook may have effectively been the CEO of Apple since January... and he may indeed be an excellent CEO to lead the company forward...
But he's not Steve Jobs.
No one truly can be.
I've been impressed by the many personal stories being written this morning. Among them:
- Om's "Steve Jobs and the sound of silence" is a moving and powerful tribute to the man.
- Robert Scoble's "A front row seat to Steve Jobs’ career" speaks of the power Jobs had to make us "believe" and of Jobs' almost-maniacal pursuit of perfection.
- John Gruber's simply titled "Resigned" speaks of Apple as Steve Jobs' greatest creation.
I'm sure many more will be written today and in the days ahead. Including this post, of course.
The Original Hacker Machine
I can credit Steve Jobs for my start in computers. In 1977, my friend Dave's father bought one of the first Apple II computers. There we were... two 10-year-old boys playing with this amazing machine. People may not remember that the first Apple II was a true "hacker" machine. In a box somewhere, I still have the original Apple II manual, because it was truly a thing of beauty... you could find out everything about every single memory location and everything else you wanted to know about the computer. It was a wonderful way to learn.
In retrospect I suspect that that first manual was probably much more of the Steve Wozniak influence, as the next version of the computer, the Apple IIe, had the much simplified manuals that came to be part and parcel of "the Steve Jobs view" of the simplified user experience.
But that first Apple II set me on a path of learning about these things known as personal computers.
Teaching Teachers
Entering high school in 1981, the school had just received its first Apple II computer. I can remember it sitting there on a lone desk in a room that had all the other components of a DEC PDP-8 and other devices in it. The teacher responsible for the computer lab, Dan Ryan, let a group of us "play" with that one computer... and as the lab grew to include more Apple computers, our "computer club" learned more and more. They were amazing times.
In fact, my first job with computers was helping out two summers at the high school - as a high school student - helping teachers learn about these computers. I remember some who were very enthusiastic ... and one in particular who was so frightened of the machine (although I've long since forgotten that teacher's name.)
NOT Going To Antarctica
Apple also is responsible for a career choice that really led to where I am today. In the summer of 1990, I was working as field technician at a remote research station on top of the Greenland ice sheet. It was a six-week gig that I had literally stumbled into by walking into an office at UNH while unemployed and having a friend say "hey, the guys upstairs are looking for people to go to Greenland". And there I was.
While there, though, I had met this whole corp of people who spent their summers supporting field experiments in Greenland and our "winters" supporting field experiments in Antarctica (where it's summer). Competition to get into this group was fierce, but there was someone there who was willing to help me get connected... and as a single early-20-something, there was a great amount of appeal!
And then I received word that Apple had funded a grant proposal I'd submitted a few months back to start up a non-profit in New Hampshire that would help other nonprofit organizations learn how to use computer technology. Apple was donating several computers, printers and other devices to help me start this organization up.
So I put aside that Antarctic idea, returned to New Hampshire, started up the nonprofit... which ultimately led to other positions that brought me 20 years later to where I am today.
Fast Forward To Today
In fact, I write this post this morning on a MacBook Pro, the corporate laptop Voxeo distributes to all its employees. While my household had a mixture of Windows, Linux and Macs, it's evolved to where it's all just Macs... and a Linux server. My iPad2 is right next to me with my list of things I planned to do today. My iPhone is in its holster on my belt... having just moved from my armband where an app helped track my 4.5 mile run this morning.
Yes, I've helped fund Steve Jobs success. :-)
Systems That "Just Work"
But there's a reason for that... and it goes back to that vaunted perfectionism of Steve Jobs. For the most part, Apple's devices "just work".
When I moved from a Dell laptop to a MacBook Pro back in 2007, I had a very simple demonstration I would do for my Windows friends:
I closed the laptop. I opened it back up. In moments, I started typing.I closed the laptop again. I opened it back up - and started typing.
I repeated this several times.
Certainly at the time this was not something that worked well on most Windows-based laptops. (May still not work well... don't know.) It was a little thing, but a HUGE timesaver!
Sure, there are reasons for things that "just work"... a closed system with proprietary hardware that is more expensive than other options. A fanatical obsession with CONTROL over every aspect of the system.
But in the end... it just works. Not all the time... and not every device... but for the most part.
One of Steve Jobs' greatest gifts to the industry was showing that:
user experience matters!
And the industry as a whole has seen the demonstration by Apple of what can be accomplished when you focus on the user experience.
Thank you, Steve!
I could go on... about how the iPod and the rise of podcasting has enriched my life... I could talk of the excellence of Jobs as a presenter (I loved Om's reference to him as a thespian)...
... but I will close by simply saying:
Thank you, Steve.
You've led Apple through an era of disrupting several industries... helped many of us in so many ways with your products... and taught us so much.
Thank you... and best wishes for what is next.
If you found this post interesting or useful, please consider either:
- following me on Twitter;
- adding me to a circle on Google+;
- subscribing to my email newsletter; or
- subscribing to the RSS feed.
Aug 23
oXygen’s Excellent Example of a Release Timeline / ChangeLog Page
As I was recently downloading a new version of the excellent oXygen XML editor (which I used to write my “Migrating Apps to IPv6” book for O’Reilly), I was struck by how great their “Release Timeline” page is. It’s truly a thing of beauty. You can easily see release dates for every major release going back to the beginning of the product (well, okay, they’ve collapsed some of the early 1.x, 2.x, 3.x, etc. releases) and with a single click on the release number can see the release notes for that particular version.
Kudos to the oXygen team for making it so easy to get to this kind of information!
Aug 22
Canada’s Jack Layton Succumbs To Cancer – And Leaves An Awesome "Final Letter" to Canadians
I never had the privilege of meeting Jack Layton, but certainly knew of him and read about him / saw him on TV all the time. When we lived in Ottawa, Ontario, from 2000-2005, the NDP was first led by Alexa McDonough with Layton taking over the leadership reins in 2003. Given that as Americans living in Canada we couldn't vote, we didn't have any direct connections to the political activities going on... but as a hardcore political junkie[1], I was fascinated by the Canadian political system and how very different it is from ours.
After moving back to the US in 2005, I've tried to keep up with what is going on north of the border. It's actually quite hard given that our mainstream media here in the US pays almost no attention to what's going on up north. My main news conduit actually has been through the Canadian friends I follow on Twitter and Facebook... their links have kept me up-to-date with what's going on in Canadian politics.
And so it was that I followed the rise of the NDP and their amazing success in the 2011 election with the NDP becoming the official opposition party for the first time in history.
And while it was known for some time that Layton was ill, the finality of his passing certainly has shocked a nation.
Layton's final letter to Canadians, though, is what is also getting a great amount of distribution today. The 2-page letter is available online for all to read and continues the positive tone he always seemed to promote. I was naturally drawn to his language relating to people fighting cancer:
To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don’t be discouraged that my own journey hasn’t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer
The letter goes on to talk of Canadian politics, of the youth of the country, and a great final section to all Canadians.
He ends with what I'm sure will become a widely quoted/tweeted/retweeted/posted text:
My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.
Indeed!
R.I.P., Jack Layton. Thank you for all you did for Canada and through that for the larger world.
P.S. And as a long-time sci-fi fan, I admittedly have to respect a politician that can be found (circa 1991) wearing a Star Trek uniform! ;-)
[1] Hey, I live in New Hampshire... it's hard NOT to be into politics!
Image credit: mattjiggins on Flickr. It turns out that this was also chosen as the official portrait used on Layton's Wikipedia page.
Aug 22
Facebook Now Reminds Us Of What We Posted One Year Ago?
When did Facebook start showing you "On This Day in 2010"? Is this new? Or something I've just not noticed?
While in Facebook today, I noticed this box appear on the right side above the sponsored ads:
Now, I've subsequently not seen that box anywhere when I've been in Facebook, and I can't for the life of me remember precisely what page I was on when I saw that box.
It's curious that Facebook would do this... just randomly show me one of the status updates I posted a year ago. I say "curious" only in that it's not clear how I would really interact with that post. I mean... would I be so overwhelmed by nostalgia that I would click on the comments or likes to see what comments were left on that post? Maybe... but that seems a bit of a stretch.
I didn't dislike having that box appear in my sidebar. It was actually more interesting than seeing the ads that I usually ignore (and obviously interesting enough to write a blog post about ;-). It was just strange... since I'd never seen this before.
Have others of you noticed this kind of box appearing inside of Facebook?
If you found this post interesting or useful, please consider either:
- following me on Twitter;
- adding me to a circle on Google+;
- subscribing to my email newsletter; or
- subscribing to the RSS feed.
Aug 22
A Monday Morning Reminder About Those Best Laid Plans…
It's Monday morning. For me, summer is effectively over. My vacation week ended yesterday. It's time to get back into the flow of work and life and get out there and kick some serious _____. I was up early and went for a 5K run this morning focused on speed and came in just over 8:30/mile even while pushing the jogger stroller the whole way.
I had all sorts of blog posts planned... I knew I had to run out to Staples to get a printer cartridge so that my fax/printer/scanner could fax out a document (a rant for another day!)... but I expected to be up in my home office around 8:20am pounding away on those blog posts.
Then... I made a critical mistake.
I handed my used-and-theoretically-dead inkjet printer cartridge to my 2-year-old to carry into Staples because she wanted to "help".
Other parents or those interacting with toddlers reading this undoubtedly know what is about to happen...
HOW MANY WAYS CAN YOU SPELL "FAIL"???
Leave it to the 2-yr-old to discover that yes, indeed, the cartridge did have some ink in it... and to get that ink ALL over her hands... and on her clothes... and subsequently on my hands....
Oops.
So there I was at the checkout counter using some Purelle and paper towels they had to attempt to clean up the major parts of the mess. The cute little hands you see in the picture here are after most of the ink was scrubbed off... but back at home where I could use some more aggressive soap.
As it was all unfolding, I felt myself starting to get agitated and anxious because I had all these plans! I had things to do, articles to write, messages to send... I could feel my blood pressure rising even as I externally was calm and patient.
And then I breathed deeply.
And reflected that this is the reality we all live in...
life happens.
You can plan all you want... you can make incredible plans, in fact... only to have them derailed by some little action, perhaps by your own action as it was in this case, or perhaps by circumstances outside your control.
The measure of ourselves as people is how we choose to react to those changes to our plans and what we learn from those changes.
In my case, I just sighed and went about the actions of trying to clean up all the ink... (and I made a note to myself that it's probably better NOT to let the wee one hold "dead" ink cartridges ;-)
