Saturday, February 28, 2009

An Unwanted Journey: Day 1196 - Yet Another Starting Point


"Living better through chemistry".

It might be the slogan for any number of pharmaceutical companies these days. But, as anyone who has undergone chemotherapy can vouch, no matter how effective certain chemical cocktails might be at targeting cancer cells, the treatment itself is about consuming the right amounts of poison at the right time. The hope is that doing so will kill some cells, leaving enough of the body's self-healing resources to return the body to a healthy equilibrium afterwards.

Similarly with surgery and radiation and other current forms of treatment. The cancer is attacked brutally and with the most potent weapons currently available, leaving the healing to occur naturally.

Current cancer treatment modalities do not heal, they injure precisely and powerfully. At some point, the patient may decide that his or her quality of life has suffered too drastically, that it would be better to let the disease run its course while alleviating pain and other symptoms as best one can.

That was my decision when my chemotherapy became harder to bear than the alternative. The alternative was the prospect of my body succumbing to metastatic colorectal cancer as liver lesions grew and multiplied in other parts of the body. Presumably, the liver will become incapable of functioning, leading to death within a few days.

The decision was a gamble. Or, to be more precise, it was a matter of educated guesswork. Never having died before, I don't know exactly how much pain is involved or even whether it will be the liver that delivers the final blow. It might well be a pulmonary embolism or heart attack with an even faster end game.

So, left with few certainties except that of death (even my chemotherapy left almost no hope of "cure"), most people will drift towards hope for the miraculous. I certainly do. There isn't a day goes by in which I don't imagine the cancer disappearing mysteriously and magically. These thoughts are, ironically, most likely to occur on those days when I'm feeling my best, when the sun is shining in through the patio doors, my wife and sons and I have eaten a wonderful meal and are watching a favourite television show together, and are engaged in stimulating conversations.

When there is pain or mysterious rashes or depression, I am still reminded that I have nonetheless better quality of life than if I had continued chemotherapy. On such days, I know that I'm going to die, but I don't think about magical cures. I just hope that in dying, I am courageous, that I maintain my values in the face of pain and lost faculties, and that my wife and children will recover and prosper in my absence. Those challenges are easier to address than hope dressed up in magical cures.

Yesterday, I suggested that there are still some "first efforts" to challenge me these days.That's right! Each day that I survive is like another starting point where I can decide to do something, anything, to proclaim that I am alive and kicking. This month of February I've alluded occasionally to the healing power of community and my naive suggestion that somehow writing blogs and being part of a virtual community is a healing endeavour. The purpose of this community appears to be to collaborate with one another on issues surrounding life, death, terminal cancer, care giving, and the enjoyment of life.

It occurred to me today, in answering blog posts and other correspondence, that one worthwhile "first effort" might be to study community itself and the possible mechanisms and processes whereby community offers healing to its members. That theme offers an interesting counterpoint to themes of individual transformation I've addressed along the way in my unwanted journey.

So I'm going to do some preliminary research. In the meantime, I would suggest readers consider checking out my niece's website - - to see some ideas in action about building community that benefit all but focus on the contributions of women, young women in particular.

Friday, February 27, 2009

An Unwanted Journey: Day 1195 - In Our Time


President Barack Obama pledged on Tuesday that the recovery plan will include funds to kick start a new effort to seek "a cure for cancer in our time." That means that of the $10 billion pledged on Feb 17 for the National Institutes of Health, about $1.26 billion will go into cancer research. The rest of the plan has yet to be revealed, but clearly the research pledge is only meant to be a "first effort".

That phrase "a good first effort" reminds me of something someone once said to me about a hand carved and painted wooden duck decoy. To be fair and accurate, the carving was a first effort. But hearing those words spoken out loud was a bit of a slap in the face. I've never gone back to carving duck decoys either because I am a true dilettante or because of a fear that a second effort would look much like a first effort, a clear indicator of my artistic mediocrity.

But today, as I lie here in my home hospice medical bed, I do hope for a miracle cure to my metastatic colorectal cancer, but I realize of course that my cancer is too far advanced already to warrant such a hope. I look at my wooden carving "first efforts", at large novels in my library still unread, at all the tasks left undone from projects in my Microsoft Outlook and PlanPlus applications that will never receive follow through. I think about all the family special events that I will miss, about weddings, births, and vacations.

When I indulge in thinking about all those things that will probably never happen, I fall into a bit of depression - not enough to merit worry, but just enough for me to realize that at this particular moment my glass is only half full. "In our time" for me means that whatever Obama and subsequent political leaders might accomplish, a cure for my cancer will not occur in my lifetime.

And then I get angry - not angry enough for anyone else to notice, but just enough to energize me into reflecting on things that I still might do "in my time" to spit into the wind, to thumb my nose at terminal cancer - to make a few more "first efforts" no matter how futile they might be according to someone else's judgements.

So what might they be? I'm thinking of buying a Folio edition of Marcel Proust's In Search of Lost Time, wait the six to eight weeks for it to arrive by mail, hoping that I can read the entire novel before the beast makes its move. Or maybe I'll get started on learning a new language, one that I can't possibly put to use conversationally while lying in my medical bed.  Or maybe I'll learn to draw and then make "first-effort" portraits of people guaranteed to be either already forgotten or soon to be forgotten.

It doesn't really matter what I choose to do to express my anger. There will be days when the anger itself is transformed into something more like joie de vie or a surprised by joy experience.

Maybe I'll just keep doing what I'm doing already. Why? Because the truth is that it doesn't really matter what other people think about my first efforts or what I might accomplish in whatever time remains for me. What matters is what I think. If I am pleased with my choice, I think there's a pretty good chance that at least a few other people will appreciate it as well.

Wednesday, February 18, 2009

An Unwanted Journey: Day 1186 - Roseto and Me


Carl Jung called it synchronicity, the concept that two or more events could occur to produce meaning even though the events were causally unrelated to one another. Believers might simply call it the Holy Spirit. Others kawinkidink.

Whatever you want to call it, it's probably safe to say that you've all experienced it, many times. In fact, you might be embarrassed to admit how many times you've thought about someone only to have that person give you call on the telephone a few moments later. Or had an idea only to find the next magazine article or book you picked up address that idea precisely.

Why embarrassed?

Because in our scientific world of cause and effect, where meaning is discovered in causation itself (two brothers toss a football in the backyard, one throwing, the other catching the first toss - a straightforward physical event with throwing and catching causally related), we become uncomfortable with the legitimacy of finding meaning in anything else (the two arrive in the backyard, coming around the corners of the house at exactly the same time, each with a football, without any prior discussion about tossing the ball around with one another for a few minutes).

In the example here, you'll notice that the meaning of the physical event of tossing the football is very different from the meaning in the intention of tossing the football with one another. The one is external, the other internal - but both clearly have meaning. One is clearly discovered by observation. The other discovered only by having the participants report their intentions to an observer.

A kawinkidink just happened to me.

My sister-in-law, and my wife and I were just discussing the notion of how my blog about cancer has created a community where all of us - author, reader, correspondent - are participating in a fairly short-term phenomenon of meaning creation. That meaning is likely to be slightly different for each of us, but its discovery and lasting impact is only possible because of the creation of this particular form of community.

In the community, we talk about death, dying, cancer, cancer treatment, ways of coping, family, friends, love, caring, religious faith and non-belief, etc. The intensity of our discussions in this community derives from the very real and probably immanent event of my demise at the hands of a persistent metastatic colorectal cancer. In other words, this virtual community isn't playing games. We're dealing with real life-and-death issues.

So then, I rearrange a few books and pick up my recently purchased copy of Malcolm Gladwell's Outliers: The Story of Success (probably because my sister-in-law had mentioned the word outliers a few moments earlier).

I read the introduction about the strange health benefits which accrued to the citizens of a small American town in Pennsylvania called Roseto. There I hear, for the first time, about the research of Stewart Wolf in his attempt to discover why those living in Roseto lived such healthy lives. Wolf demonstrated that the reason was community.

It wasn't genetics, or diet, or exercise, or even a culture brought over from their hometown of the same name in Italy. It was, instead, a consciously created community where it was common for three generations to live together in the same home. Where most people went to the same church every week. Where people stop to chat with one another as they shopped along the main street in the many individual family-run stores. Where people tend to work in the same occupations. In other words, where a special kind of community existed which inoculated the citizens against the ravages of the typical modern American diet and way of living [it's worth noting that the Roseto effect faded over time as the sense of community was lost in the melting pot of American life].

I have half-jokingly said to many people that the single most therapeutic treatment I have discovered has been my blog. But now I'm wondering if I wasn't touching on something more than merely the catharsis of writing about my experiences and then reading the occasional response to something I wrote. I wonder now whether there isn't an actual physical benefit which derives from the creation of a virtual (sometimes physical) community.

It would be a marvellous synchronicity if this were so.

Saturday, February 14, 2009

An Unwanted Journey: Day 1182 - The Road Ahead


There are three things that are especially important for me these days:

  1. Finding pain relief
  2. Finding appropriate metaphors for my journey with cancer
  3. Sharing my discoveries with those who care

When pain is unbearable, nothing apart from pain relief matters. When pain becomes unbearable for me, I can slip into a demanding and unreasonable frame of mind.

Thankfully, I don't recall too many times when I've been totally unreasonable in my demands, but there were occasions when I don't think I "passed the test" owing to unbearable pain.

The next two concerns are obviously related to one another. Right from day 0001, I realized that I would need to find ways of speaking about cancer, both to others and to myself, that were meaningful, that made sharing my experiences in a blog format possible, and that emphasized the importance of attitude and choice. The prevailing metaphor of fighting cancer seemed to me too limiting. 

The military metaphor consisted primarily of words which stressed fighting, battling, conquest and defeat. One of the reasons the military metaphor didn't work for me was because it implied that every combatant was engaged in a hopeless contest whose end result was predetermined; one might win battles, but never the war.

In addition, I had this strong suspicion that one's choice of metaphor, one's use of descriptive language, had a direct effect on one's experience. At the very least, I hoped that my experience of cancer would be one of discovery, of "healing" (not necessarily physical cure), and of revealed wisdom. I didn't want my experience to be one of despair, fear, endless frustration, and dismay. I anticipated that along the way there was an opportunity for growth and sharing insights with others.

There have been major and minor breakthroughs during my "unwanted journey". This week past, for instance, I think my wife has helped me come to terms with a tendency on my part to have unrealistic expectations about my physical condition.

I've been feeling pretty good for the past two or three weeks, so much so that I've started to revert to the military metaphor, dreaming of "fighting" cancer and "winning the battle".  She has reminded me that my "journey" - especially since choosing home palliative care - has been one of pain and symptom management.

It's been about identifying pain and other symptoms related to the treatment of my metastatic colorectal cancer, applying drugs and other approaches, and then finding a balance which provides me with as much "quality of life" as is possible given the damage cancer and other treatment protocols have already inflicted on my body.

The latter approach, and the language which goes along with it, are more indicative of a journey than a battle. Even the idea of taking things minute-by-minute is more indicative of a hike in the woods, or an early morning canoe ride, or a meal with family and friends.

It has taken well over a week of reflection, visits with colleagues, friends, and family, a recurrence of pain incidents and other "reminders" that I am a case study in managing pain, not to mention a delightful change of pace in reading habits from non-fiction to novels (see Neil Gaiman's American Gods; a kind of allegorical road trip with myths and mythology seeping through the cracks in the pavement) to help me uncover just a little more wisdom about who I am, where I am, and what lies ahead on the road.

Sunday, February 08, 2009

An Unwanted Journey: Day 1176 - Miracles and Unfinished Business


In the comments for Day 1171, Andrea refers to "work to be done" that her father had to complete before he could move on to the next world. For those who believe, there is comfort in such reflections. A life after this one. The opportunity to "tidy up" before the final transfer from one domain to the next.

For those who believe...

One thing is certain about such reflections. They are meant to provide comfort and meaning. I honour that intent . But apart from some death bed reversal of world views (which will not happen), I cannot take comfort from such thoughts.

And so, this evening, as my wife and I watched the Raptors lose their sixth straight game, I broached the subject of "unfinished business", not because I believe the gates of heaven require a special key for me to enter that I must help forge, but because I truly do not want to leave behind a legacy of personal issues that I could have addressed but left undone.

We talked about different people with whom I have had serious conflict. Some family members have openly hoped for reconciliation. But as we discussed such possibilities, we agreed that there is nothing and nobody with whom I must make amends (in the Alcoholics Anonymous sense of the 12-step program).

My life is an open book. My character is best described as "what you see is what you get". If there are some with whom conflict remains, then they will remain - not because I am stubborn (although I am definitely that), but because self examination and reflection tell me that there is no wasted energy bound up with those historical conflicts, nor anything for which I should beg forgiveness. I am at peace, not only with myself, but with others - as much as is possible.


In other comments for the same day, Lorna Scott alluded to her husband and me as candidates for the miraculous. As it happened, in a telephone conversation with my parents today, we also spoke about the possibility of the miraculous. My mother is a believer who not only believes in the intrusion of the supernatural in daily life, but expects it. My father...not so much. But he did say today that he would be delighted if my improving health led to a miracle, the first that he could honestly acknowledge and welcome in his life.

Again, in my world view, the word "miraculous" doesn't work. I am far more amenable to thinking of continuing health as a positive "black swan" event (see some of my posts which talk about the impact of the highly improbable and Nicholas Taleb's work). But however we talk about it, whatever metaphors and imagery we choose to describe possible meanings for such phenomena, the point we are each making is roughly the same.

Lorna also referenced the necessity of approaching the good and the bad on a minute-by-minute basis. My wife and I also decided, in this evening's reflections, that this is truly the only viable way to approach the future. When pain threatens my equilibrium, deal with it moment by moment. When hope brightens the horizon, enjoy the gift, taking it in moment by moment. When uncertainty is dominant, reflect on the possibilities momentarily, choose a course of action, move forward, and then review as the moments for reflection arise.


I am grateful for all of you. As we discuss such issues, we discover jointly the wisdom that works for each of us individually. It will undoubtedly not be the same wisdom, for each of us are unique individuals. But there will be wisdom nonetheless.

There were others this week with whom I visited who also provided gifts of wisdom and sharing. You know who you are. Soup, sailing, singing. Each deserves a blog, but this is it for now...

Friday, February 06, 2009

An Unwanted Journey: Day 1171 - Period of Uncertainty


It's been on my mind all week. I've been feeling better, so much so that, other things being equal, the direction of my health would lead me to believe things will continue to improve. And, in a kind of naive empirical way, that is precisely how I have been thinking about my life.

That translates into activities such as leaving the house for a visit to Chapters with my wife on Tuesday with nothing but my walker to remind me that mobility can sometimes still be a problem. I am reading again too - not just browsing book and magazine covers. Friends, when visiting, have brought over more books, more journals, and even more CDs for me to spend time with. It's been amusing actually to have my wife complain about the maze of books and magazines surrounding my bedside making access to my bedside tables that much more difficult.

The hospice care nurses have been postponing visits more frequently these days too. When everything is going well, there isn't much to do for them. Today, when one of the nurses did come for an on-site visit, she was very pleased to see that the "butter-fly" injection site was still as healthy as the day she initially set it up, over 10 days ago. She was also very pleased to see that I have been averaging only 3 bolus infusions of the "breakthrough" morphine medication every day, down from the initial 10 to 12 applications when the self-administered PDA pump was first used (in addition to the "breakthrough" morphine, I still have the "maintenance" fentanyl patch).

But for all the good news, my naive empiricism keeps wondering when the tide will turn - at which point I guess it's no longer naive. Each day, I have bouts of uncertainty about what's coming next. So when I start to nap a little more - which I've been doing the past couple days - I begin to wonder if the drowsiness is the first sign that the "good days" are coming to a close.

Or I might eavesdrop on a conversation between my wife and somebody on the phone obviously asking how I'm doing. I will hear my wife talking about her father's battle with cancer and the good days he had before his final turn for the worse. Or she might be heard saying something about "just enjoying the good days that we have". It's not just my wife, or course; other friends and family members can be heard saying similar things.

Here's the thing. I want another 30 years or so. I want the obituary to say something about dying peacefully in his sleep at age 90. But that's not going to happen. Will it?