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September 2005

Taking Advantage of Some Hospitality

Amy started running a fever this afternoon, and it was close enough to the end of regular office hours that we went to the emergency room to have her examined.  Her fever reached a level of 103.5 (F) before it started coming down (Tylenol to the rescue).  A blood test revealed that she was suffering from severe neutropenia, where the number of neutrophils (one type of white blood cell) is too low to mount an effective defense against infection, a not uncommon complication from chemotherapy.  She was admitted as an in-patient, and the ER doctor said we could expect a stay of a few days.

Everyone at the hospital was very, well, hospitable.  Amy is not one to take things lying down (at least not figuratively speaking), especially when it comes to health issues, and the nurses and doctors were all patient in explaining what they were thinking and doing, and why (and when).  That said, I will admit to feeling an emotional surge of relief, hope and gratitude when our chemical oncologist walked into the treatment room -- akin to a western movie when the marshall rides back into town (and not just because his name is Matt) -- and helped us better understand what was happening ... and why.

We were told she'd be there "a few days", but we have frequently encountered optimistic projections from the various medical practitioners we have interacted with over the past several months (perhaps oncology naturally draws optimistic people).  Meanwhile, she has a nice, single, spacious room to herself, and can enjoy some truly professional hospitality for a while.


The Darkest Hour

There are a set of songs that always provoke a visceral reaction in me, with symptoms including tingling, goosebumps, teary eyes and, on some occasions, even sobs.  One such song is Long Time Gone, by Crosby, Stills and Nash, which I just played, and which had the intended cathartic effect.

Amy has been in more pain today than I have ever witnessed (in her or anyone else).  I have been with her through two childbirths (including one exactly 14 years ago today), several multiple sclerosis exacerbations, and a variety of other challenges over the 25 years we've been together.  She is one of the toughest, most resilient, women I have ever known (and I will admit that there have been times where I have not viewed that toughness and tenacity quite so admiringly, at least not without reservation).  When she cries out in pain, I know it must be intense.

In my recent reading of Field Notes on the Compassionate Life, I came to know that the meaning of compassion is literally "to suffer with".  I have been increasingly opening up to compassion in a number of dimensions, perhaps because there is so much suffering so close to home.  And I have been feeling increasingly ill in my relative helplessness to do much to soothe Amy's suffering.  I want to achieve more equanimity, in this and all situations, doing my best while detaching from outcomes, as it doesn't do her (or anyone else) any good for me to physically suffer on account of what she is going through.  There are moments when I can take deep, long breaths, and practice acceptance of what is ... but, alas, there are far more moments where my breaths are short and I feel consumed by grief.

Amy's radiation "graduation" was scheduled for today.  Unfortunately, due to her extreme discomfort, we had to postpone, and will try again tomorrow.  Regardless of whether/when we proceed with the last radiotherapy treatment, the chemotherapy is over, and the side effects will diminish ... and so the dawn will come.

It's been a long time comin',
It's going to be a long time gone.
But you know, the darkest hour,
Is always, always just before the dawn.
And it appears to be a long,
Appears to be a long,
Appears to be a long time,
Such a long, long, long, long time before the dawn

[Update, 2005-09-29: I neglected to mention that while the cumulative radiation burn is painful, the primary pain Amy is suffering from now is severe abdominal cramping, which she compares to labor -- and the analogy can be extended, as the pain of moving her bowels is quite intense as well ... but I won't go there.  This morning, her chemical oncologist recommended she has increase her use of pain and muscle relaxant medications, and this has made life a little more bearable.]


Major Combat Operations have Ended ... Not (Week 5 update)

Last week, I thought -- and wrote -- that Amy would be done with chemotherapy and radiotherapy yesterday (Friday).  I was half right, in that the chemotherapy is over; however, her radiation oncologist wants her to undergo three more radiation sessions -- with a narrower field -- to help ensure that the anal cancer is eradicated. So, the battle continues for a bit longer ... and I hope that my allusion to a more famous pronouncement of an end to major combat operations does not portend any further coincidence with the course of that theater of operations.

As I mentioned last week, Amy received another injection of mytomycin on Monday and was outfitted with another Fluorouracil (5FU) pump.  The pump was removed yesterday.  She was feeling pretty good -- all things considered -- for the early part of the week, until the side effects started kicking in (primarily diarrhea -- yesterday was a 5 Immodium day -- and fatigue).  The last few days have been pretty rough, especially with the radiation burns increasing (and increasingly painful).  She has a hard time finding a comfortable position: sitting or laying on her back would be most comfortable, except for the growing pain in her butt.  We're not out of the woods yet.

It was nice having Amy's mom here this past week to help out in a variety of ways (with Amy, the kids, the cooking, the cleaning, etc.).  Other family and friends have been in touch recently, and Amy said that some who have read my posts on the cancer counterinsurgency have not understood that her cancer, or rather, its treatment, has a very high cure rate (95%, up from the 90% I initially reported).   So the long-term prognosis is very good ... and keeping our eyes on this prize helps us meet the short term challenges.


Christopher Paolini on Multiculturalism, Synchronicity and Dwarven Operas

I took Evan and two friends to see Christopher Paolini, author of Eragon and Eldest, speak at Mercer Island High School at an event sponsored by Island Books on Tuesday night. 

Paolini1 Paolini2 Paolini3 Paolini4Paolini5


Paolini gave an engaging presentation on a number of themes related to his books and his writing process.  He said that second books of any trilogy are typically dark and foreboding, as they have to set the stage for the final triumph contained in a trilogy's third book.  First books introduce the characters and context, and second books allow for more in-depth exploration of those characters and their context and even culture; Paolini said he was particularly keen to elaborate on the different races and cultures (Elves, Dwarfs and the Varden) of Alagaesia -- the fictious world his characters inhabit -- in his second book (Eldest). 

[Aside: ever since Hurricane Katrina, I have been more attuned to race, class and culture issues myself ... and I noticed that of the 700+ people who were at the talk and booksigning event, there was only one black family present.  I don't know what proportion of Mercer Island residents are black, but I was surprised by this 0.5% representation at the event ... and got to wonder whether there was a significant racial skew in the readership of Eragon and Eldest ... and what this may say about the racial differences in where children look for heroic figures (Eragon is clearly a hero in my son's view).   I saw a number of Asian families in line, so I don't think Alagaesia and its inhabitants are of interest solely to people of European descent.  Anyhow, back to the event...]

Paolini shared several instances of synchronicity [my term] he has experienced.  The day before his first Island Books book talk, he received an offer from Random House to publish Eragon (which had, up until then, been a self-published book ... and Island Books was instrumental in spreading the word about the book at that early stage).  The day before his second Island Books talk, he received a message from 20th Century Fox that they were going to make an Eragon movie.   While he was writing Eldest, he struggled for months to solve a puzzle ring someone had given him, and incorporated a puzzle ring into the story ... and the day he wrote the section where the puzzle ring was solved in the book, he solved his real world puzzle ring.

In another example of "crossover" from the fictional to non-fictional world, the author read some passages written in the languages he created for the characters in his world: one passage in "the ancient language" of the Elves, another in the Dwarven language.  I have to admit that I stumble through these passages myself, when reading with Evan, so it was a treat to hear them read so clearly (and with such feeling!).  There were a number of other fun and interesting tidbits that Paolini shared during his 30-minute talk -- which helped compensate for our subsequent 90-minute wait to get his signature inscribed in the books the boys brought -- but I'll finish with his idea of a "dream job": writing Dwarven Operas.


Howard Schultz on Human Needs: Community and Health Care

I keep coming across inspiring references to Howard Schultz, the CEO of Starbucks.  Last week, I discovered a recent interview in KNOW Magazine entitled The Art of Creating Passionate Consumers, which included the following quotes:

  • ... consumers are demanding more. They want products or services that create a powerful and enduring emotional connection.
  • The fracturing of our humanity, fracturing of trust in public institutions and corporations has created significant cynicism. However, people want to be a part of something that they can believe in. They want to be associated with a product or service that they can rely on. Companies that are serving these emotional and human needs of the customers will really stand out amidst this cynical backdrop.
  • ... we are not in the coffee business serving people, but in the people business serving coffee. The equity of the Starbucks brand is the humanity and intimacy of what goes on in the communities that exist in each and every location. We continually are reminded of the powerful need and desire for human contact and for community, which is a new, powerful force in determining consumer choices.

And today, I saw a reference in the Worthwhile Magazine blog to a Business week article about Schultz' recent testimony before the U.S. Senate on health care costs:

Starbucks Corp. will spend more on health insurance for its employees this year than on raw materials needed to brew its coffee, the company's chairman said Wednesday.

Howard Schultz, whose Seattle-based company provides health care coverage to employees who work at least 20 hours a week, said Starbucks has faced double-digit increases in insurance costs each of the last four years.

"It's completely non-sustainable," he said.

...

Schultz said Starbucks' benefits policy is a key reason it has low employee turnover and high productivity.

He declined to endorse any specific legislation, saying his goal was to raise awareness of the problem. But whatever solution is adopted, he said, "Every single American needs to have access to health insurance -- full-stop."

I like the reference to comprehensiveness, but what I think we really need is universally guaranteed access to a basic level of health care, not simply access to [private] health insurance, which can be declined or withdrawn based on business policies rather than the commonwealth -- or, perhaps, commonhealth -- of our citizens.  Riffing off one of his quotes in the KNOW Magazine interview:  Governments that are serving these emotional and human needs of the citizens will really stand out amidst this cynical backdrop.


Blogging as Therapy

A recently published Blog Trends Survey, sponsored by AOL / Time Warner, provides some evidence that people often seek therapeutic effects from blogging.  The press release reports that

  • Nearly 50% of respondents say they write a blog because it serves as a form of self-therapy.
  • One-third of bloggers write about self-help and self-esteem topics.
  • Fifty-four percent like to share their thoughts and feelings with others, and 43% like to chronicle their life and interests.
  • In times of need or high anxiety, one-out-of-three people (31%) say they turn to either writing in their blog or reading the blogs of other people who are experiencing similar issues; that's six times as many people who prefer to seek help and counseling from a professional (5%). The No. 1 answer was seeking advice from family and friends: 32% vs. 31% who turn to blogs.

The report also claims that bloggers tend to blog "for themselves", which I interpret as meaning that they are blogging for their own benefit without regard to whether others are reading their blogs, or what kind of impact that might have.  However, I don't see much evidence to support this claim, and I suppose it is a difficult claim to support.  I claim that I blog primarily for myself, but I do know that people have read some of my blog posts in the past, and some may read them in the future, and this does have an influence my blogging practice.  I'm not sure how I would demonstrate this, though.

Unfortunately, while the study provides evidence that people seek therapeutic effects through blogging, it does not say much about whether or how people find the therapeutic effects they are seeking.  While journaling is therapeutic in its own right, the opportunities for interactions -- supportive and otherwise -- that are created when one embraces vulnerability by posting one's journal entries in a public forum (and inviting comments) add an important dimension to the potential therapeutic benefits to blogging.  I would like to know more about whether people find or create online support groups through their blogging, and what impacts this has. The report does include some survey findings that point in this direction:

  • Sixty-one percent of bloggers feel that posting a comment on another person's blog is the "right thing to do."
  • One-in-five bloggers (23%) worry about offending people in their blogs.
  • More than three-out-of-five (65%) of bloggers admit to feeling disappointed when people post negative or abusive comments to their blogs.

However, I'm interested in how open people are willing to be in their blogs, how often their openness is rewarded or punished, and whether they have become more or less open over time based on their blogging experiences ... essentially exploring how blogging addresses one of the dimensions of Oriah Mountain Dreamer's Invitation:

It doesn’t interest me what planets are squaring your moon...
I want to know if you have touched the centre of your own sorrow
if you have been opened by life’s betrayals
or have become shrivelled and closed
from fear of further pain.


Getting Technical Again, with Head First Java

After 9 years of little or no programming, I'm taking the plunge and getting technical again.  I've been threatening to do this, regularly, throughout this period, but ever since I finished graduate school, I've had the mixed blessing of working with very talented people who were more technical than I was, and so I instead took on other responsibilities -- planning, directing, writing, presenting, promoting, defending -- in a series of collaborative technical development projects at Accenture Technology Labs, Intel Research Seattle, and most recently, Interrelativity.

There was a time when I considered myself technically proficient, even expert.  I taught computer programming (Pascal) at the University of Hartford every semester from 1984-1989, developed several versions of production-quality commercial software (30K lines in Turbo Pascal) as an independent consultant from 1989-1993, and became an expert LISP programmer during my graduate work at the University of Massachusetts, ending in 1996.  The applications programming world has changed a great deal since then -- not that Pascal and LISP were necessarily representative of the programming world prior to 1996 -- with client / server architectures and the Internet.  While I've been aware of these changes at a high level, I'm finally getting to know web-based client / server application development intimately.

And, to assist me in this growing intimacy, I've been greatly infotained by Head First Java, by Kathy Sierra and Bert Bates.  The authors do a fabulous job of blending theory and practice, providing engaging examples and exercises, and provoking thought and laughter through a variety of mechanisms throughout the book, including vintage-style photos with cartoonish captions, puzzles, interviews with Java classes, and a winsome conversational style.  This is the most enjoyable technical book I've encountered since The Structure and Intepretation of Computer Programs by Harold Abelson and Gerald Jay Sussman, a significant aid in my last peak of technical proficiency. 

I also really enjoy the Head First authors' blog, Creating Passionate Users, which is about creativity, passion and people who use technology.  As with the book, the blog covers topics that go far beyond computers, programs and people who use them, though there is usually some connection made to one or more of these themes.


The Health of our Nation: CodeBlueNow

The Seattle Times printed an opinion piece today from two former governors on "Re-creating our health care system".  Arne H. Carlson, a Republican and former governor of Minnesota, and Booth Gardner, a Democrat and former governor of Washington, highlight the instability in our current health care system in the US and the risks such instability poses to our democracy.  They emphasize the importance of citizen / community involvement, prevention, leadership and dialogue.  I was in complete agreement with everything they wrote until I reached the following:

We must focus on affordable health care coverage for all of us.

I was extremely disappointed when the Clinton Administration's efforts to overhaul our health care system started using the code words of "affordable health care" rather than "universal health care".  It's hardly surprising, given the intense lobbying pressure from the AMA, the insurance companies and other interest groups with a vested interest in maintaining the status quo. 

I believe a basic level of health care is just as much a right -- and just as important to the proper functioning of our democracy -- as a basic level of education, and I think that the only way to provide this basic level of health care to all Americans is to have a single-payer health care system funded by the government.  I've written more about this recently, and so won't write more here, except to say that I sure as heck hope that CodeBlueNow lives up to its name and proposes something more progressive than "affordable health care"!


Reinforcements Arrive before the Final Battle (Week 4 update)

It occurs to me that we're actually at the end of week 5 since the start of Amy's cancer treatment, but given that she had a week-and-a-day hiatus from radiotherapy, this can still be considered the end of week 4 based on the number of treatments (20) ... and that way the headers on my weekly posts are more consistent.

We have some good news this week.  Amy's mother, Mary Lou, arrived from Wisconsin Thursday night and will stay until next Saturday.  We expect that the next two weeks will be the most challenging, and so we are grateful for her willingness to come out and help us through this period.

This past week, Amy's white blood cell (WBC) counts were low again (especially her neutrophils), and so she was given G-CSF injections on both Monday and Tuesday to keep her WBC levels within the range of acceptable risk for continuing radiation.  With only 5 radiotherapy treatments (one week) left, we want to avoid any further breaks.  Amy's fatigue has increased, but she has been having less gas and has had no diarrhea for nearly 3 days (!).  We anticipate that this respite will be shortlived, though, a sort of calm before the storm.

Next week, she will undergo another round of chemotherapy, in conjunction with the final week of radiotherapy, essentially a reply of her first week of treatment. [Note: I just corrected my first post in this thread of "cancer counterinsurgency", in which I incorrectly stated that she would be undergoing 5 weeks of chemotherapy; it will be a total of 5 weeks of radiotherapy and 2 weeks of chemotherapy.]  Monday she will get another injection of Mytomycin and be outfitted with another infusion pump to administer Fluorouracil (5FU) over the course of the week.  Our chemical oncologist told us on Monday that the first administration of the drugs creates the most significant "shock" to the body, so when the second round of drugs is administered, the body will adapt a little better ... and so the side effects attributable solely to chemotherapy should be somewhat milder.  However, there will still likely be significant side effects from the chemotherapy, and they will continue one to two weeks after this coming week.  And since the side effects of radiotherapy are cumulative, we're still bracing ourselves for the worst ... but at least we can see the light at the end of the tunnel ... and we have some extra help during the start of the final stretch.


Three NWEN Authors on Sex and Intimacy, Interpreneurism and Foundering Founders

Friday morning I attended another inspiring NWEN Venture Breakfast, headlined by three authors -- all of whom are NWEN members -- sharing their insights and experiences in the entrepreneurial world.  Due to the short time frame (one hour), each author was asked to focus on 5 takeaways from their respective books.

Prior to the three authors' presentations there were two excellent five-minute forum presentations, one from Tom Eng, CEO of Healia, on his company's specialty search engine that focuses on high-quality medical information, the second from Jim Sutton, EVP of MicroGREEN Polymers, on his company's low-cost, high-yield and eco-friendly insulated cups.

SibcoverLindsay Andreotti, co-author (with Brian Hilgendorf) of "Sex, Intimacy, and Business: The Revolution Is Starting. . . It's Time to Get Undressed", highlighted the benefits of openness and honesty in intimate relationships, whether they be personal or professional.  The cover of the book shows a pen and its cap, and Lindsay started off with a Rorschach Test, asking us what we see in that cover.  She made numerous other connections between sex, intimacy and business (beyond the obvious one illustrated by the book cover) that were both humorous and insightful, and summarized the book using the acronym BEACH:


InterpreneursjourneyTom Eckmann, author of "An Interpreneur's Journey: The Birth of a 'New Economy' Business", wrote his book in order to set more realistic expectations on the part of prospective entrepreneurs, and to draw attention to the growing trend in using the Internet to build a [virtual] business (hence the term "interpreneur").  My favorite quote from the entire event (and there were many good ones) was Tom's observation that "The biggest challenge faced by an entrepreneur is convincing your spouse that it's a good idea."  His five-point summary included the following:


  • You don't need a new invention or proprietary technology in order to succeed
  • You don't need to hit a "home run"; "lifestyle" businesses can also be worthwhile
  • Write a business plan
  • Don't seek other people's money unless/until you really need it
  • Recruit good advisors

FounderfactorNancy Truitt Pierce, author of "The Founder Factor: Insider Secrets to Growing a Billion Dollar Business", emphasized the need to redefine "success" for a founder.  The traits that often serve the start of the company (being unreasonable, arrogant, impatient, opportunistic, irrepressible, visionary, compelling, scary smart) often do not help the company grow beyond an early stage, and it would be in everyone's best interest to celebrate an entrepreneur's success at a mid-point (before the founder founders) and bring in someone who has a different set of skills to carry the company forward.  Nancy's five-point summary included:


  • Build a great board
  • Set up balanced evaluations
  • Hire top talent
  • Find a right role for the founder (in later stages of the company)
  • Define decision authority clearly

Brian Hilgendorf joined the panel during the Q&A session, and shared his observation that the entrepreneurs who succeed are so clear in their vision that they have no fear, and other people want to be around -- and help -- people like that ... reminding me of an inspiring quote from W.H. Murray on commitment and providence.

Nancy Truitt Pierce shared her own analogy to this concept (originally articulated by another entrepreneur, whose name I did not catch): entrepreneurism is like getting into a car, driving 200 mph at a wall, and hoping it opens at the last minute, just like the bat cave.