Friday, October 31, 2008

An Unwanted Journey: Day 1072 - Bit of a Break

Given the number and severity of side effects I've experienced, we've decided to postpone my second chemotherapy treatment until next Friday. As well, we will reduce the dosage by 20 percent, thereby reducing the side effects as well. An appointment with a urologist is being scheduled to determine if and when I can remove the catheter safely and with renewed bladder function. I've stopped the oxycodone pain killers completely and starting to recalibrate my daily schedule.

The immediate result was a night with deep, deep sleep, followed by a day of lethargy in which the best I could do was watch some of the HBO series John Adams, do an assessment and dressing change with my new CCAC nurses from Paramed, and otherwise try to relax. The sleep was so deep that I was totally unaccustomed to it. I awoke at one point with disorientation, not even knowing momentarily who I was, where I was, and what was going on. That frightened my son, who happened to be in the room when I awoke. But it was only the one night, and my sleeping seems more normal now.

I am looking forward to actually doing something today and being around when the kiddies drop by for Hallowe'en. There will be the Raptors' home opener in HD to watch this evening too. So, it looks like this break may be the start of a trend towards better times...I sure hope so.

Wednesday, October 29, 2008

An Unwanted Journey: Day 1070 - Root Cause Analysis

One of my friends (he'll recognize himself immediately when he reads this) was often a proponent of solving operational problems through a tool called root cause analysis (RCA). It isn't rocket science, but in the hands of someone like him, it truly shines as a way to discover the full extent of a problem whose outlines are only modestly appreciated. Then, it continues by employing questions and analyses which sort through the many candidate reasons why the problem arose in the first place, looking for the one, two, or more root causes and secondary causes.

It always struck me, when working with him on problems in which this formal analysis was used, that its applicability went far beyond manufacturing and operational systems in general, right to everyday life issues and even recurring geopolitical controversies.

If the events of the past week are typical, then RCA should be applied by medical staff and patients alike, especially when one realizes that treating symptoms sometimes seems more important to both parties than dealing with the underlying causes.

My wife and I just returned from a 5-hour visit to the emergency ward of the Grand River Hospital. I finally acceded to my wife's demands because the pain had, yet again, become unbearable, and the symptom relief approach I had been taking was itself accentuating the pain in the lower back and abdomen. "She was right, and I was wrong!"

After describing the new pain in the lower back, the recent problem of failure to void my bladder, and the continuing issue of diarrhea and constipation, we went into what I think is a standard RCA approach. We took a urine sample (that was very difficult in itself). We performed a bladder scan and found that I was retaining urine, at least 717 ml. We catheterized and let the bladder drain until 1200 ml was in the bag. We did x-rays on both the bladder and the rectum, hoping to see a correlation between the two organs. We did. The rectum and colon had evidence of stool backup and stagnation.

The doctor then explained the anatomical reasons why constipation might be applying pressure to the bladder, thereby preventing voiding in a natural way. In addition, when he took a medical history, he discovered that I had stopped a 2.5 year Flomax prescription in late July or August. He then explained how doing so could account for a gradual failure of the bladder to void, leaving larger and larger volumes in the bladder until I became symptomatic.

Only then did he recommend a course of treatment to deal with the root causes he had just proposed. Start up the Flomax again over the next few days. This would gradually aid the bladder in voiding entirely rather than partially. Wear a special catheter and leg bag for 2-3 days to void the bladder, thereby allowing the bladder some time to heal and to let the Flomax do its work. As a side benefit, I wouldn't have to deal with self-catheterization (I became pretty good at it in 2006, but doing it once instead of several times a day definitely has advantages for my personal comfort levels). Finally, if my oncologist agrees, I might actually need a prescription for a laxative after all this time spent on treating diarrhea.

Some of the secondary causes we discussed included pain killers in general, oxycodone specifically. These almost always are responsible for some level of constipation. The irinotecan, although it generally has the effect of increasing diarrhea, will sometimes do the exact opposite.

One of the things we didn't talk about but which strikes me as essential is the problem of communication. I noticed at our consultation on Monday that the family physician specializing in oncology and I were using words like diarrhea and bowel movement in slightly different ways. This isn't just a matter of inconvenience, it is directly related to the measurements one uses to determine which approaches to take to symptom relief. Here's one example. If by diarrhea, you mean either watery stool or more frequent stool elimination, then you might be treating something that doesn't exist. If by bowel movement, you mean any elimination from the anus, then obviously the count of bowel movements in a day can be arbitrarily and artificially inflated, thereby leading to treatment of symptoms which don't really exist.

In my own case, I was using the larger definition of diarrhea, while the doctor was using the narrower definition of stool that includes a watery, runny component. By my definition, I had diarrhea; by hers, not so much. It's even worse with bowel movements. I was equating trips to the bathroom involving elimination of stool, no matter how minimal, with bowel movements. She was using it in the narrower sense of counting only those eliminations in which there is "substantial" and "greater than normal" watery consistency of stool. This meant my counts were often double or triple what hers would have been. Is it any wonder that I might have been following a treatment protocol for diarrhea when I should have been following one for constipation?

When we arrived home, I took half the normal dosage of oxycodone for pain relief. But even at the time, it was clear to me that having voided the bladder left me with very little pain at all. In fact, I may simply go "cold turkey" on the pain medications later in the day.

I know that this is a lot of detail for something that most people would rather not discuss publicly. But, given the dangers inherent in treating symptoms rather than discovering root causes, and given the very significant problems of communication and definition of terms, it's clear to me that medical staff and patients should be having these conversations and doing root cause analysis.

Instead of having a week from hell, it might have been a somewhat interesting journey through purgatory.

Sunday, October 26, 2008

An Unwanted Journey: Day 1067 - Hearing Voices

A Beautiful Mind. Well, at least when I'm dreaming.

One of oxycodone's documented side effects is auditory hallucinations - hearing voices. If hallucinations can be defined simply as "perceptions that occur without connection to an appropriate source", then the auditory variety can be especially disturbing and threatening. Why? Because simply opening your eyes might not resolve reality from illusion.

If you are addicted to sports on HD TV, then there's a chance you stayed up very late last night watching the Phillies and the Rays duke it out in game three into the wee hours of the morning after a very substantial rain delay made an otherwise long affair into a marathon. When I finally turned off the TV and closed my eyes, I started hearing voices. The voices I heard were my wife and my eldest son. What they were saying was slightly muffled, but it made sense, so much so that I opened my eyes and asked my wife if she was talking to me. She wasn't.

And so I quickly discovered that "hearing voices" was disturbingly closer to the real thing than I otherwise would have imagined. Not only does this give me a better understanding of the world of schizophrenia, it offers perspective on the illumination of mystics who have "heard" the voice of God. It may even hint at the compulsions of the criminally insane.

Fortunately, in my case, the hallucinations were rather mundane, reminders of "things to do" (if you must know) - the kind of vocalization often heard in our home emanating from the only female voice in the household unit. Somebody with a death wish might call this nagging. The three male members of our household have learned to think of this voice as the voice of God.

If you've taken any "healing journey" courses for cancer patients, then you'll know something about the value of guided and unguided meditations. Even though my auditory hallucinations last night were drug induced, it got me thinking along lines explored by the "freaky" philosophers of the 60s, people like Timothy Leary.

My admittedly weak thought goes like this: what if you could induce the capacity for hearing voices and then actively cultivate those voices as part of a healing, multi-sensual experience? Certainly imagining a voice and "hearing voices" are a world apart in intensity. If one could harness the intensity of auditory hallucinations and put it to good use...

I know. Probably a bad idea. Too many variables and probably too many things which could go wrong. Probably simpler and better to cultivate lucid dreaming skills which are completely under the control of the individual.

My wife might have a different viewpoint. How much more effective if "she" could harness the voice of God and dispense it on demand to her three dearly loved and frustratingly male family members.

Saturday, October 25, 2008

An Unwanted Journey: Day 1066 - Peaking at 9

Last night, just as it appeared my pain might be manageable, I had a night from hell. Peaking at 9 out of 10 on the pain Richter scale was the worst of it (around 3:30 am), but the pain was never below a 6. What I discovered was that the oxycodone was ineffective against the general rectal area pain. I also realized that a single tablet was almost useless. I had to up the dosage to 2 tablets every 6 hours to establish a baseline for the rest of the pain distributed everywhere else.

It's difficult to describe pain like this. The rectal pain is a kind of diffuse pain which comes in waves and is greatly increased merely by moving. Getting off the couch feels like someone stabbing me in the buttocks. Walking is very difficult - only moving very, very slowly helps. Bending over can be excruciating. The waves of pain are directly related to the "mechanical" sensation of needing to pass gas or have a bowel movement. BMs, however, have become a kind of Marquis de Sade experience.

At least with the two tablets of oxycodone and a couple well timed BMs, I was able to avoid a trip to the emergency ward of the hospital.

To say I am a wreck is a real understatement. My tactic is very simple - keep almost completely still, take 2 oxycodone tablets every 6 hours, and hope that BMs will relieve some rectal pain.

Oxycodone has some very odd mental side effects. Vivid, nightmarish dreams are one part. But what is worse is that my thinking (if you can call it that) is very fuzzy and nonsensical.

Last night, for instance, I remember thinking that I needed to carefully distinguish between the types of pain I was feeling and what was working to alleviate each. So I'd closed my eyes and then try to separate the "mechanical" pain of constipation/diarrhea from the general pain, only to find myself "thinking" that there was a third pain, one which could be treated by other patients looking at me and directing special pain-killing thoughts over a distance to me specifically. If we established eye contact, some kind of telepathic connection was created; the person could immediately discern what was going on and then respond with a healing thought sent my way. Of course, it was reciprocal, so we'd have to negotiate a quid pro quo arrangement (telepathically, of course).

As I rehearse this nonsensical thinking, I realize that most of my logic has departed. Too many variables, drugs, decisions, symptoms. Pain holds the trump card right now. All I can do is ride it out and depend on my caregivers to see me through this.

Friday, October 24, 2008

An Unwanted Journey: Day 1065 - Drugged

Obviously, thinking isn't my strength this week. Or writing. Or staying awake. Or being pain-free.

Thursday, just as the fatigue seemed to dissipate slightly, there was yet another side effect - an incredibly painful aching in the nether regions. In fact, last night was about the worst I can recall since 2006 when I was convinced I had a bowel obstruction during my radiation treatment. Extra strength Tylenol didn't even touch this pain.

Today was only slightly better, until I got a prescription for oxycodone, a narcotic I had refused to continue taking while recovering in hospital in September from the laparotomy. At the time, as soon as I closed my eyes to go to sleep, I had the most bizarre and disturbing nightmares. I recall thinking that the medicine was worse than the cure.

This time was different, though. The pain was far worse so I was strongly motivated. As well, I had no intention to go asleep right away. Now, finally, I'm feeling reasonably human again.

Still, the Community Care Access Centre has decided to have a special pain and symptom management team involved with my home care. This is probably a good thing given the complexity of my past treatment and the drugs that are part of my chemotherapy protocol.

I'm hoping to start reading and reflecting again soon, maybe writing something in my blog entries about more than a simple reciting of pain, fatigue, and medication. But this too is part of the journey...

Wednesday, October 22, 2008

An Unwanted Journey: Day 1063 - Unrelenting Fatigue

Monday was a good day, so good in fact that I visited some colleagues at work. As I chatted with my colleagues, I wondered if I could start doing something useful for the team. After all, I was feeling good, and I was excited to hear about all the initiatives underway. Sure, I was tired later in the day, but overall felt great.

Then came Tuesday. I know memory isn't always helpful in trying to evaluate the fatigue associated with chemotherapy, but I don't remember feeling quite so out of it before. I must have slept 18 hours at a minimum, only just arising about 10:30 am this morning with at least a slightly more energetic sense than Tuesday.

This is why I realize that I cannot make unrealistic commitments about my time and energy. If days like yesterday (and perhaps today) are the price I must pay to maintain a modicum of health in the fight against cancer, then that's what I'll do. Hmmm, time for another nap.

Sunday, October 19, 2008

An Unwanted Journey: Day 1061 - PICC'd, Flushed, Infused

One chemotherapy infusion down, 5 more to go before the next CT scan in about 3 months.

The first Avastin and FOLFIRI treatment is coursing through my veins. The PICC line is in place, finally. And I did the first of my daily flushing of the PICC line with separate saline and heparin solutions after the Comcare nurse disconnected the Baxter "baby bottle". Side effects have been mild thus far...mainly insomnia from the anti-nausea drugs, very little diarrhea, and of course some temporary chemo-brain.

The latter reminds me of an article we read at the cancer centre Friday by an observant and funny breast cancer survivor:

" If cancer offers you a glimpse of your mortality, chemotherapy offers you a glimpse of your senility." - Jenny Allen, "Memoir: Enough about my cancer", in More: Canada's Magazine Celebrating Women Over Forty, Feb/Mar 2008, p.116 (of course, I was only interested in the articles!)

If I could count on chemotherapy being like this regularly, then it really wouldn't be so bad (at least after 2 days of continuous infusion). But I know from experience that it gets progressively worse, so I need to reserve judgement a while longer.

My biomarkers are reasonably good right now too. My temperature is steady and my blood pressure and pulse rates are all good. In a couple weeks, I should have updates on the CEA levels, white blood cell counts, etc. So at this point, I'm feeling pretty good. Even the rash on my chest and right biceps from the first attempt at inserting the PICC line is starting to clear up.

And so the roller coaster ride begins again.

If you've followed any cancer blogs before - including my own - you'll recognize that nothing can be taken for granted. There are good days and bad days, times when the therapy appears to be working, other times when new metastases appear from nowhere, days of strength and vitality, days of fatigue and fear.

But today is unequivocally one of the good days.

Friday, October 17, 2008

An Unwanted Journey: Day 1059 - The Goodness of Friends

Friendship and kindness are wonderful comforting companions when you're traveling an unwanted journey.

Today, after arriving home from an 8-hour session at the Grand River Regional Cancer Centre's chemo suite, a package was waiting for me from a friend. He had arranged for a dedicated, signed copy of Neil Peart's book Ghost Rider: Travels on the Healing Road: "To Don. Good luck on the 'Healing Road'. All the best, Neil Peart." The gift came just when I was feeling completely overwhelmed with the start of my chemotherapy.

Eight hours in the chemo suite is more than enough. But it culminated with a "baby bottle" of 5-FU and watching another patient in tears being comforted by a family member. It hit me all of a sudden that there were too many stories in that room, too many people facing very difficult circumstances. Earlier in the afternoon, for example, as I returned from the washroom wheeling my pole with the drugs being infused into my PICC line, another patient commented on my LIVESTRONG wrist band. He too had one. We talked about both being on palliative chemotherapy, the value of Lance Armstrong's work for cancer patients, and the need to maintain our strength and optimism. Just a couple moments when strangers tend towards friendship.

My nurse today was very kind and considerate, as was my wife of course. Kindness doesn't just come from friends. It comes from family members and nursing staff. Wednesday, my parents brought me another inspirational book when they came for a visit. My brother joined them just because he wanted to see me before chemo began too.

Friends and family members continue to write - "thinking of you" email notes, humorous items, election results post mortems, even dietary and travel destination recommendations. It's all about kindness. That too is sometimes overwhelming, a kind of compensating weight on balancing scales - treatment on one side, comforting relationships on the other.

Tipping the scale can happen at any time. In fact, it's inevitable. And then the tears come...some from sadness, some from gratitude, some from laughter, some from weariness, some even from recognition and commiserating with others traveling similar paths.


Just a few medical details for those interested...

CEA - 9.8, up another 2 points

Liver lesions - the 2 visible ones have grown about a centimetre to 4 cm each.

PICC line insertion - the standard insertion technique didn't work, leaving a large bruise on my right biceps; even the medical imaging procedure required two attempts on my left-arm biceps with 2 doctors and 3 nurses (very sore)

Avastin and Irinotecan treatment - not much of an initial reaction today other than trouble focusing (couldn't drive back home) and some obvious chemo-brain thinking and speaking (noticed by both the attending nurse and my wife - "Gee, Don, when did you get so stupid!")

Laparotomy incision - healing nicely; starting to shower the area directly now with the steri-strips starting to come off under the water; regaining some core muscular control, although it's slow going

Tuesday, October 14, 2008

An Unwanted Journey: Day 1056 - Watching

"It's easier to die than to watch someone die." - TV series House, episode Maternity (first aired 7-Dec-2004)

I'm watching my wife these days. Watching her take care of me. Watching her coordinate all the medical appointments. Watching her fret about the future, about life without me by her side, about how I will respond to chemotherapy, about how my sons are doing, about everything.

She was with me again today as we went to the Grand River Regional Cancer Centre for blood work and for the PICC line insertion. I told her she didn't need to join me, since I'd probably be there for several hours, but she insisted, and I was glad to have her with me.

As it turned out, the PICC line procedure had to be aborted after a couple failed attempts to find a suitable vein in my right arm. It's not fun having a needle probing inside your biceps looking for that mysteriously disappearing vein. And so we left the centre far earlier than expected and will have to go back a couple days from now to medical imaging where they will put a dye into my right arm and then use x-rays to find the best candidate vein for the PICC line.

This is actually a good thing. I remember having problems with the PICC line previously during chemotherapy. If we get a good vein and have fewer curves in the tube, then the drugs should have easier and more direct access to the heart. That should mean less time spent in the chemo suite trying to unblock the line.

My wife will come with me to all those appointments. She'll come on Thursday too, as we do something we've never done before - a fluoroscopy.

As I watched her while waiting for my appointment today, I hoped that she never has to go through treatment like this for herself. If she does, I wonder who will accompany her for treatment. Will it be one of our sons? Will it be another life partner? Will it be a friend? I'd like, of course, for it to be me...but that's not going to happen.

I know it is very stressful for her to watch me go through all this. I know it's difficult for our sons, for my parents, for her mother, for our close relatives, for our close friends, for my colleagues and others. But most of all, it is she who has to deal with the watching and waiting.

Whether it's easier to die than to watch someone die can be debated endlessly. Let's just say that care givers need more care than they're often given.

Sunday, October 12, 2008

An Unwanted Journey: Day 1054 - In Praise of Mediocrity

Celebrity. Greatness. Reputation. Power.

So much of our lives is devoted to worship and emulation of those who are "successful". It's simply everywhere. The implications of success are, when unexamined, absolutely ridiculous:

  • having the most money

  • being the most attractive

  • elected to the highest office

  • being the tallest, the most muscular, the thinnest, the youngest

Actors, entrepreneurs, athletes, politicians, authors, and a few other occupations are part of a category where you either succeed and become giants within your vocation or struggle to get by, part of the multitude of dwarves who didn't scale the heights. Those occupations are scalable.

Most of the rest of us work in occupations where we are paid by the hour (if paid at all) where we produce a unit of work. We may discover a few tricks and become more efficient. We learn a bit more and get a few raises. We make a little more, a little less, but will probably never match the wild extremes of poverty and wealth of those in so-called scalable occupations.

In a word, we're least according to the prevailing perspective on success.

But viewed from another perspective, it can easily be argued that the vast hordes of the mediocre collectively make very significant contributions. In my own work life, I've seen this repeatedly. Programmers and developers, designers, writers, quality assurance staff, customer support specialists - their collective efforts make the difference between corporate success and failure. From that perspective - from the perspective of the collective - there is no progress without the aggregate contributions of those who will never receive the extreme rewards of outlandish, scaleable, success.

I guess it's inevitable that when you stare death in the face, you wonder about how your own life will be evaluated. Will I be considered a success? Will my contributions stand the test of time? In the world of high technology especially, what does it really mean to stand the test of time? What about on a personal level? Will my character and influence be judged in a positive fashion? Will the way I face declining health and end of life inspire others?

I'd like to argue here that mediocrity, especially when viewed as a modest kind of tinkering with the "stuff" that comes your way in life, can be considered a success. Right now, for instance, I find myself tinkering with ideas and the stuff of everyday life in the context of metastatic colorectal cancer. Unlike Randy Pausch and Leroy Sievers, I don't have hundreds, perhaps thousands, of people following my blog entries to see what I've written. I don't have dozens of people contributing their own accounts in the comments section of my entries on a daily basis. In other words, I don't have the "numbers" associated with standard models of success.

On the other hand, when the ripples of my own tinkering are viewed on a collective basis, my "mediocrity" is definitely making a contribution. My doctors, my nurses, my family, my friends, my colleagues, my acquaintances, my silent readers, my unpublished, private correspondents - they all demonstrate to me that I am making an impact.

On Friday, I start my palliative chemotherapy treatment. Ten years ago to the day, one of my dear friends died from the scourge of metastatic colorectal cancer. I miss her dearly. But as her husband corresponded with me recently, her imprint is still felt today in the lives of those she touched, both in life and in the example of meeting death head on and with tremendous courage.

By almost all popular standards of success, we are both examples of the mediocre. And yet I'd like to think we can both be considered successful. Those incremental imprints, those modest contributions of courage and tenacity, those moments of insight - spread out over the admittedly small cadre of people who care - they will help other people meet their own life-and-death struggles. I really don't know if such contributions should be praised, but I do believe they help us move forward with greater confidence and meaning.

Saturday, October 11, 2008

An Unwanted Journey: Day 1053 - "Life as a Horse"

Marc's Belgians 019
Originally uploaded by rtfax
"Seen from a distance, it's perfect." - tagline from the 2001 movie Life as a House

If someone were to ask me, "What is the most beautiful animal in the world today?", I think I would have to answer, "The horse."

Yesterday, a friend took me for the second time to visit two of his Belgian horses - Sweet Sherry and Classy Barb. It was the perfect autumn day. Sunny skies, leaves turning colour in the woods around the farm, few insects, apple trees dropping fruit in the yard, a wagon ride, brushing the sweat from Sweet Sherry's flanks after taking over the reins and steering the two horses back into the barn, a few photographs, and talking with my friend about his horses.

We talked about other things, of course. How my family was dealing with the news of my prognosis. How my sons were doing in university. How my incision was healing. What kind of chemotherapy I'd be getting next week. His recent walking trip in the villages of Tuscany. Red wine. Big screen TVs. Canadian Thanksgiving.

Often, when driving north to visit family members, we travel through Orangeville. We always see horses, admiring them from a distance, but seldom stopping the car to take a longer look. But I'm stopping more often these days to indulge myself when I notice something beautiful or merely interesting.

Yesterday was one of those days when time didn't matter. It was just about seeing Marc's horses, hitching them up and driving them for a while, and enjoying the sheer beauty of two Belgians. And they are truly beautiful, not just from a distance, but up close and personal as well.

Friday, October 10, 2008

An Unwanted Journey: Day 1052 - "It's No Fair!"

Sometimes TV is too close.

Yesterday I visited with colleagues at work and another friend for coffee. In both cases, I was asked what I'm doing to fill my days. One of the answers, of course, is that I'm watching more television. As I heal from surgery, that's natural enough, and as I begin chemotherapy, television will remain one of the few things I can do to pass time.

Sure, I'm reading and writing and visiting, but television has become an important part of how I pass time.

It's odd, though. Admitting that to colleagues and friends sometimes seems like a confession rather than a simple answer to a simple question. Maybe it's because the conventional wisdom is that watching television is a waste of time, something analogous to drinking whisky alone from a flask hidden inside your jacket. It doesn't matter that most people do the same. What matters is that you pretend to do something more "useful" or "productive" with your time.

But whatever the merits or demerits of watching television to pass time, I'm doing it, especially now that we have high definition channels and a big screen TV (a concession from my wife that there won't be many other things that I can do in the months ahead).

Yesterday night, we watched the season premieres for CSI and Grey's Anatomy. In case you haven't watched these episodes, I won't spoil the entire plot for you, except to say that both involved death and dying. But one thread of Grey's Anatomy was entirely too close to reality for me.

A young woman with a cheery disposition comes into the hospital for a liver resection for cancer metastases. She is confident that surgery will be curative. Instead, as it was for me, surgery reveals that the CT scan didn't discover the full extent of the metastases. The surgeons have to close her up and tell her, in effect, that she is dying.

When Meredith sits by her bedside, the woman tries to remain cheerful, but breaks down sobbing "It's no fair!" repeatedly.

I've admitted to a few people recently that there are moments when I feel the injustice of things deeply. There are moments when I want to grab one of my oncologists and demand an answer to the question, "Why the hell couldn't you find the metastases earlier than you did? I mean, I did everything you told me to do. I had all the lab tests done exactly on time. I never missed an appointment. I told you about all the symptoms I experienced regularly. Why is this happening to me? It's not fair!"

In the CSI episode, Grissom says that the team is trained to comfort the relatives of murder victims with the phrase, "I'm so sorry for your loss...until now we didn't realize how inadequate that phrase truly is."

Others have said similar things to me. I've had to say similar things to myself - "sorry for your loss" - because no matter how unfair, no matter how deeply felt the injustice, the loss remains. Being sorry, and saying so - however inadequate the words may be - is still better than nothing at all.

Maybe it's time to watch some comedy on the big screen boob tube...

Thursday, October 09, 2008

An Unwanted Journey: Day 1051 - Black Swans and Tinkering

As some of you know, I have a second blog. It is called Bringing Closure and is devoted to the more technical aspects of my career in information technology.

On December 31st, 2007, I wrote a brief entry about a book called The Black Swan - The Impact of the Highly Improbable, in which I mused about anticipating the unexpected during the course of 2008. It seems that anticipating the unexpected is far more difficult than I ever could have imagined.

I certainly did not anticipate that I would have donated my collection of information technology books to the executive of the Waterloo Wellington Information Technology Professionals group that I co-founded in 2005; that the reason for doing so was that metastatic colorectal cancer would rob me of my work and put me on short- and long-term disability with a two-year prognosis; that I would have an abortive liver resection; that I would be starting chemotherapy with Avastin and FOLFIRI; that both our family pets would have died; or even that the credit crunch in the United States would turn into a global market panic.

Nor did I ever suspect that so many of my career-related acquaintances would become dear friends, an entirely new support network of people committed to helping me deal with terrible health diagnoses and prognoses. Maybe I wasn't completely blind to these possibilities, but neither was I anticipating them in any meaningful way.

But like the author of the book The Black Swan, I employ stories and vignettes in this journal to illustrate my unwanted journey, even though most of the significant aspects of that journey were entirely unanticipated, something which narratives blur and confuse.

My blog is entitled Don Spencer's Artifacts, an allusion to my confidence in the power of ideas - artifacts - while the major thread of this blog is entitled An Unwanted Journey, a series of vignettes about the vagaries of my personal experience of colorectal cancer. It is the vignettes, not so much the ideas, that illustrate the value of this blog. Certainly ideas are not without merit, it's just that they lack the resonance and memorable quality of narratives.

My narratives, like all narratives, impose an order on the past. They transform a black swan into something we all think we could have predicted beforehand. But when the truth is told (albeit in narrative fashion), all I've really done is tinker - after the fact - with material provided in an apparently random fashion.

Here's an example.

Yesterday I met for coffee with a colleague at a place called Matter of Taste, where we sipped latte and cappuccino and talked about books we were reading (and a little about work). My friend spoke about the markets, especially the markets in the United States, and the catastrophic loss of confidence we are all witnessing. That triggered a thought for me about a couple books still in my personal collection by the author Nassim Taleb. I promised to forward a reference to the titles when I returned home. In doing so, I found the books and started browsing them again. As I did so, I recognized a key word - tinker - that had just surfaced in some apparently unrelated reading I had done recently of the relatively new science of Evo-Devo, evolutionary developmental biology (see Sean B. Carroll's Fruitfly Study Shows How Evolution Wings It). From there, as I continued with my online search, I discovered that Taleb's forthcoming book is tentatively titled Tinkering.

After the fact, it all seems so obvious. Evolution apparently works through tinkering with a simple chemistry set of DNA. Free market economies work through endless and free tinkering (not planning or regulation). Cancer treatment works by tinkering with the body's own defensive and regulatory systems (when it works at all). Narratives work by tinkering with the random components of a life lived, especially one in which other people figure prominently.

Apparently it's all about black swans and tinkering.

Tuesday, October 07, 2008

An Unwanted Journey: Day 1049 - Rainbows and Clouds

Originally uploaded by rtfax
People sometimes have a hard time reading blogs like this. I think I understand why that is the case.

When I was recovering from my first bout with cancer, when I was told there was "no evidence of disease", I would struggle sometimes reading updates from Randy Pausch or Leroy Sievers. Part of that struggle, I assumed, was that their declining health reminded me that I was doing better than they were. I didn't like those reminders. I was glad I was feeling better, so anyone reminding me that cancer sucks, that cancer kills, that cancer can come back at any moment - well, those were things I would rather forget.

But when I learned that my cancer was back and that it had metastasized to the liver (and later would learn that it had metastasized outside the liver as well), even then I had a hard time reading the updates.

And then they died. As did two other acquaintances within the past few weeks.

Reading what they had written filled me with foreboding and a sense of dread. Sure, much of what they wrote was also inspirational and truly helpful in setting priorities and reflecting on what a journey with cancer could be. But it's hard work and it demands courage. Life before cancer seemed simpler and didn't make so many demands.

I realize that there are distinct advantages in not being forced into thinking about a relatively narrow, circumscribed, limited future. You plan, you think about eventually having grandchildren, you consider what retirement will look like, what kind of contributions you can still make, what talents you can still develop.

But then the doctor tells you that your prognosis is about 20 to 24 months, that if you want to do some traveling, you should probably do it now, that the future will be filled with chemo and side effects. All of a sudden, much of the future simply drops off the map. Is it any wonder that people don't want to be reminded of such things?

But there are advantages too. Some things which one might otherwise take for granted offer up nuances and meaning that wasn't as obvious before. You open your eyes and see things that you might otherwise gloss over - things like rainbows and clouds, things like water rushing over the Horseshoe Falls, things like winning modestly at the casino, things like a meal with your family at the Outback, things like watching a Raptors game together, things like listening to your favourites play list on the iPod while traveling in the car, things like a sip of a piping hot and ridiculously expensive Americano with Hazelnut flavouring at the hotel's Starbucks...

These are things that slip by, often unnoticed, sometimes observed but discounted because they don't fit with your planning exercises, things that are by nature fleeting and temporary. I don't mean to sound unnecessarily Buddhist here, but the truth is that all things change, all things decay, all things will fade - it's just a matter of when. The good news in all this is that redirecting and limiting one's perspective to narrower bands of time means that those fleeting experiences can be savoured and relished. As I've hinted before, it's a matter of attitude and a choice to invest oneself as fully as possible in the time that is available.

Even though I would rather have the luxury of more choice, the choices available to me now are good enough. After all, rainbows and clouds can be absolutely glorious.