Sunday, December 31, 2006

An Unwanted Journey: Day 0403 - Goodbye 2006

I am happy to bid adieu to 2006. Not ecstatically happy, just pleasantly ready to turn the page on a very difficult year, one in which I received more hospital and cancer-centre care than I ever thought possible earlier in my life.

Today, after going to the cinema with my wife and two sons to watch Rocky Balboa, I thought about one of the sequences in the movie in which Rocky is fighting the far younger world's champion and thinking, "Like I told the kid, it's not how hard you can hit, but how hard you get hit and yet still get up to take another."

That's sort of how I feel today as 2006 comes to a close. I feel beat up. I feel like I've been through a boxing match with a foe who has defeated far too many before me and many far better persons than I could ever hope to be. But I am still here. I am still fighting and ready to battle again should the need arise. Yet, also like Rocky, some of the rage and passion to enter the ring is gone. This is a good thing, as it was for Rocky. The catharsis worked, some of which I got by sitting at a keyboard and describing my experiences on this blog and hearing from so many in email, on the phone, in personal visits, and in comments on my blog. Thank you to all of you for being in my corner with me.

But it's not just about me. I am grateful that as we enter 2007, I can turn to my family with a greater sense of being able to contribute to their wellbeing, of having more energy and better health to make a difference in the lives of those I serve through my vocation and through community service, of having more to contribute to the welfare of others than a personal perspective on the battle against cancer.


"Something that seems as though it might be conclusive or might concur with something else, but never quite does so." -

Here's an artifact that has sprung up recently in my brain's archives - asymptote.

In mathematics, an asymptote is usually illustrated with a straight line and a curved line. The curved line spirals down in amplitude around a centrally located straight line until the curvature is virtually impossible to detect with the naked eye, although clearly the mathematical expression of the curvature goes outwards to infinity with the two lines never becoming precisely the same.

The beauty of the human brain is that it can detect the pattern and see the similarities even though each instance of the lines in the illustration are never the same.

Yesterday I wrote about Life's Little Mysteries, the clear implication of which was that science and technology gradually and inevitably supplant the sensation of mystery with natural explanations. Karl Rahner, the late Catholic theologian, would probably disagree. For Rahner, God can only be approached asymptotically, in other words through what he called "absolute mystery". Humanity has, in his view, an inescapable orientation to mystery in which rationality must be supplemented by divine revelation. To simplify even further, we can get close, but that's it.

A fellow blogger has a wonderfully named blog called Asymptotic Life. He writes that the name for the blog represents a journey of coming ever closer to God but not reaching that destination until infinity (interesting that he doesn't choose the word eternity). I'm not sure whether or not I agree with him or with Rahner about mystery and the journey towards divinity, but I certainly do appreciate the "hard wiring" of the human brain that recognizes patterns in apparently dissimilar systems. If it were not for asymptotic reasoning, humanity would be doomed to a quest for certainty. Instead, we have evolved to a point where we recognize that patterns and universal behaviour may be understood without perfect causal-mechanistic explanations.

If Karl Rahner and DJ (the AsymptoticLife blogger) are simply saying that the best we can hope for in relation to explaining the divine is to "point to the moon" without mistaking the finger for the moon, then I have to agree wholeheartedly with them both. If, however, they are suggesting that there is a category of knowledge called divine revelation, I will have to humbly, yet forcefully, disagree. There is simply no evidence for that assertion, explained asymptotically or otherwise.

But having said all that, I am certain that the different trajectories or journeys we travel are converging over time and would welcome further dialog about such journeys, unwanted or asymptotic.

Saturday, December 30, 2006

Life's Little Mysteries

Mysteries usually aren't that mysterious. The history of science and technology proves that every marvel of nature we examine has a natural explanation. From why we experience alternating days and nights (obviously at this time of year, the lack of sunlight is an important part of living in the north country, as is seasonal affective disorder) to why some people experience debilitating bouts of depression, we find that application of ingenuity, study, and engineering know-how usually results in better understanding of phenomena that originally appear to be totally mysterious.

At the dawn of human civilization, night and day became more than just part of our existence. They became targets of applied reasoning. Unlike most animals (as far as we know), the human brain is structured and has evolved so that the most mundane aspects of experience eventually elicit a question of "how does that work?" Why is daytime followed by nighttime? The question is usually then followed by a sense of awe. "This really is amazing. Something which we take for granted is actually totally mysterious!"

But eventually that sense of awe prompts a more investigative frame of mind. "I wonder how that really works?" Then the hypotheses and guesses start accumulating wildly. Maybe the sun and daylight are actually a great god riding a chariot.

Then, slightly more naturalistic explanations start creeping in, although gods and goddesses usually linger in the imagination as evidence of the human need for mystery and awe. Perhaps the sun is just a ball of fire created in the firmament and rotates around the earth (the assumption of most biblical accounts). Eventually, as the impulse to understand continues and human observation is enhanced by mathematics and technology, the need to refer to divine intervention disappears. Daylight is merely exposure to the sun which occurs because the earth rotates every twenty-four hours. The seasons are merely aspects of the earth's orbit around the sun and the tilt of the earth's axis. No need to bring god into the equation.

One thing that has struck me recently, though, is that the lingering of the mysterious doesn't always involve gods and goddesses. It is sometimes found merely by invoking the human mind. Depression, for instance, is often still considered a problem of fortitude and incorrect thinking - in other words, a failure on the part of an individual to think right thoughts. The implicit judgement is often that if one would just adjust one's thinking, the depression would disappear.

The assumption appears to be that if a great god is not needed for a satisfactory explanation, perhaps all we need to do is assert the activity of the little god - ourselves. We are responsible for our moods and feelings, for creating them ex nihilo, and should therefore merely be admonished when overwhelmed by feelings of depression. After all, as little deities, we merely have to change our minds and the symptoms will vanish.

But then science and technology appear again and beat back life's little mysteries and the little gods who are responsible for them. Seasonal affective disorder indicates that sunlight can have a direct causal relationship with our moods. Or deep brain stimulation indicates that some forms of depression are caused by some kind of electrical misfiring of neurons in the brain.

Does this mean I have no use for mysteries or for human responsibility? Not at all. Merely that a sense of awe, no matter how valuable the emotional experience, is just one step in the process of human reasoning. So, too, it appears that facile attributions of human responsibility should not interfere with exploration for more natural causes in the physical world.

Sunday, December 24, 2006

"I Like George Bailey."

"I wish I had a million dollars."

Yeah, It's a Wonderful Life - still one of my favourite Christmas videos. And George Bailey is one of my favourite movie characters. I guess I'm just a sentimental fool. Like George, I am still wishing for a million dollars and wondering when I'll get to explore the world. Like George, my life has not been entirely of my own design. But when I have angelic help, the big picture of my life isn't too bad at all.

I hope each of us has a Clarence hanging around us this Christmas...just when we need him.

I need more storage so that...

...the artifacts of my life have a home.

My working life began with museum artifacts - studying them, documenting them, interpreting them, and finally displaying them so that the general public could share some of the information I had discovered. The term artifacts - in the context of museums, archives, and galleries - refers to elements of the collections preserved according to the mission statement of the institution. Those elements include objects, images, and manuscripts.

It wasn't long after beginning my museum career that I was asked to assume responsibilities for an IBM personal computer at The Seagram Museum which was networked with 9 other museums, galleries, and archives in Waterloo region and Wellington county who had agreed to store the information about the artifacts in their collections in a central repository, a database management system at the University of Waterloo called SPIRES (Stanford Physics Information REtrieval System). The Waterloo-Wellington Museum Computer Network was initiated by the Museum and Archive of Games, located at the University of Waterloo, to coordinate the activities of registrars, librarians, and collections managers from the participating institutions. SPIRES was used to create, administer, and share our collections management records.

As my computer-related responsibilities grew, I quickly came to understand how the terms objects and artifacts had meaning within the world of software developers. In that context, the terms referred to software elements with properties and methods comparable to their real-world counterparts. The two worlds of computers and museums were colliding and providing new opportunities to expand my horizons.

Some colleagues in the Ontario Museum Association and I created an ad hoc business entity simply called Artifax in order to begin to address some of the opportunities for using personal computers and networks in the museum field. We designed software for both Apple- and IBM-based systems to provide information paralleling traditional publications like the Museum and Archives Supplies Handbook. Later on, I took over sole proprietorship of Artifax and eventually ran a full-time business designing custom software applications for clients primarily located in the Waterloo region and Wellington county.

Storage was always a problem, not just for museums, archives, and galleries, but for other companies and for me as an individual. There was never enough storage for the massive amounts of information that could be stored about museum artifacts or about one's own life. Music, photographs, video, text, structured or unstructured - there never was a problem of having too much storage capacity.

Today, I work as an IT Manager and have helped establish another regional interest group for IT Pros called WWITPRO, a user group for IT professsionals using Microsoft software. Storage of documents related to business and to the user group is always a matter of setting priorities and deleting or archiving older documents.

At home, every member of the family has a personal computer, an iPod, and a cell phone (two of us also have digital cameras). Still, not enough storage. The situation is better than ever before, I have to admit that much. All the music and photographs stored on my notebook computer are also to be found on my 60GB iPod. Even my Pocket PC has a 2GB mini SD card intended to carry copies of all my mind maps and other personal and business information critical to daily functioning. Mind maps especially make organizing my life easier, but they too demand more and more storage.

But, oh would a 750GB hard drive make life easier! Backup of the entire family's music files, all our digital and scanned photographs, all the family videos generated over 3 generations, geneological data and other family-related documents, not to mention copies of essays, blogs, portfolios and video game data.

One thing I would really like to delve into during 2007 is podcasting and video blogging, something which is not possible given the storage limitations of my current hardware. Personally, apart from the iPod, the Pocket PC, and the digital camera, I have 2 notebook computers and one desktop computer available to me at home. Each of my sons has more hard drive capacity on their desktop computers, but I don't feel right in asking them to share that disk space with me. But audio and video data storage and editing software consumes massive amounts of storage. A 750GB hard drive would certainly make entry into that world a genuine probability.

Saturday, December 23, 2006

An Unwanted Journey: Day 0395 - One-Word Prognosis

My surgical oncologist's receptionist called to tell me that a form that required some comments from the surgeon was ready for me to pick up. I did so and then read the comments later in the day. For a week in which there was hardly enough time to relax, reading those few words from the surgeon lifted a load from my shoulders, especially the one-word prognosis - "Good".

My cancer diagnosis was advanced stage III, T3N1M0. The latter is a code used to designate the stage (1-4), whether nodes are affected or not (either 0 for no, 1 for yes), and whether or not any distant organs are involved in metastasis of the cancer (0 for no, 1 for yes). One year later, after a surveillance colonoscopy, another biopsy, an ambiguous CT scan, and a pathologist's report, it was truly reassuring to read that single word on the form - "Good".

Today is the first of ten days I have off work and the first day of our family time together to celebrate Christmas, the winter solstice, and the coming new year. It will be a time of relaxation, reading, spending time together over special meals, perhaps traveling to visit family, watching movies and sports events on television, and reflecting on the year past. Unlike this time last year, in which nothing seemed certain other than a very aggressive treatment plan to rid my body of cancer, this year is marked by hope and, again, that one word - "Good".

And so it seems an appropriate time for me to revisit the theme of my personal blog. My unwanted journey is not over. No oncologist will tell me that I am cured, nor even that I shouldn't be concerned about recurrence. But I am definitely entering a period of recovery. I have no idea what the future holds in store for me, especially in regards to battling cancer. Still, there is reason for hope and for turning to other topics in my online writing. I hope you agree with me, doing so is very, very "Good".

Saturday, December 16, 2006

An Unwanted Journey: Day 0388 - I'm glad we have you

Weekends are especially enjoyable right now. My wife and I are spending more quality time together on the weekends, doing simple yet enjoyable things together - things like shopping and other errands, getting up early on Sunday mornings and going to Starbucks for a latte and to listen to Tony Bennett's Duets, driving into the country or around the city to see the Christmas lights in the evening. Last weekend, I purchased an FM transmitter for my iPod. Now, with a Christmas holiday playlist of about 10 of our seasonal albums downloaded to the 60GB iPod, she and I can simply be in the car listening to an eclectic blend of the old and the new, the jazzy and the sublime, the sacred and the secular.

It's just pleasant, and very fulfilling, spending time doing these things together. I know it sounds sentimental, but last weekend I mentioned to her how much I enjoyed our time together. This weekend, she spoke simply, and yet directly, "I'm glad we have you with us this year."

Yes, despite the roller coaster ride, despite the emotional uncertainty, despite the continuing side effects of chemotherapy, I am here and with the ones I love.

It's almost Christmas. This year, it won't be a cancer Christmas. It will be a cancer-free Christmas, a time of hope, a measure of peace. I'm glad we have the stories of Christmas. I'm glad we have each other and I'm glad we have more time together.

As we drove today and talked about the changes we've been through, I asked if she thought cancer would recur. Of course, she doesn't know, any more than I do, but given the test results I've had recently, it really wouldn't be that surprising if someday, somehow, we have to face that kind of news directly. But not yet, not now.

Friday, December 15, 2006

An Unwanted Journey: Day 0387 - Bit of a scare

Wednesday evening I received a call from my medical oncologist wondering if I had any swelling in my left arm. Evidently, the CT scan indicated that there might be a blood clot in my arm. So started a conversation that left me wondering just what kind of condition I was really in after all.

The oncologist then went on to say that the radiologist's report indicated that there was strand-like tissue in the rectum that was possibly indicative of a recurrence of cancer. I mentioned that I had already been through a surveillance colonoscopy and a biopsy, the results of which were negative. He was unaware of those results, but decided that we needed to do an MRI anyway. A few moments later he called back again to ask qualifying questions about the MRI which might make the procedure dangerous, such as a metal sliver in the eye.

I guess I don't need to explain how a call like that in the evening from a medical oncologist can really spoil one's day. He has never called me at home like this before so I assumed there was something in the CT scan that had concerned him enough to prompt the call.

I really do appreciate how my medical team has been so thorough in testing my condition during this past year. But recently, the roller-coaster-like series of tests, results, concerns, and good news has left me wondering whether I should be extremely pleased or worried. Then, when you add on the continuing problems I experience in the evenings with bowel discomfort and fatigue, a bit of a scare seems like an understatement.

Recovery really is just another stage in this unwanted journey. Too much uncertainty.

Wednesday, December 13, 2006

Visiting a Toastmasters Club

As I mentioned in a recent An Unwanted Journey blog entry, Toastmasters is an excellent organization with a superb track record for enabling individuals to become better public speakers and leaders. As with any organizations, there are aspects that one might wish to change, but overall my estimation of the structure and value of Toastmasters International is unabated.

This morning, I had the pleasure of being a guest at the Black Walnut Toastmasters club which meets in the Sun Life/Clarica building in Kitchener-Waterloo. This club meets on Wednesday mornings from 7:30 am until 8:50 am. Because Wednesday is my day off work and because the meeting is first thing in the morning, there are few reasons not to seriously consider involvement. I still have to be aware that I am in recovery, but if my energy allows, it seems like a good idea.

This particular club is extremely well organized. Each meeting has a theme and each person participating in the meeting is invited prior to the meeting to provide the chair with some thoughts on the theme. Then, when the chair introduces the participant, he/she uses those previously provided comments to make the introduction. In addition, there was a folder provided for each guest with membership information, typical meeting formats, evaluation forms, tent cards for names, and sample Toastmasters magazines. At the front of the meeting room a white board was prepared with the names of guest, the theme for the meeting, and announcements.

Table topics, in which each person not delivering a speech or evaluation is given an opportunity to address a theme extemporaneously, was a fun way to begin. That was followed by a grammarian delivering the word of the day and challenging speakers to use the word appropriately throughout the course of the meeting. There were three speeches given by members to complete objectives in various training manuals prepared by Toastmasters International, such as speeches to inform, to roast a friend, and to provide technical information. Each speech was then evaluated, as was the participation of everyone in the meeting by a general evaluator. Guests were invited to comment on the meeting and then we were dismissed exactly on time.

Another well run Toastmasters meeting. Joining this group may be something that I do in the new year.

Tuesday, December 12, 2006

An Unwanted Journey: Day 0384 - Neruda, Co-Conspirator

Cancer leads one to odd connections.

In the news recently, we have been hearing about the reaction of Chileans either mourning or celebrating the death of General Augusto Pinochet who led a junta to depose the democratically elected president, Salvador Allende, in 1973. One of the greatest poets of the 20th century, Pablo Neruda, a close collaborator of Allende, lay in a hospital bed at the time of the junta dying of prostate cancer. He died within 12 days of the coup d'etat.

Shortly before he died, Neruda's house at Isla Negra was searched by the Chilean armed forces, during which he was quoted as saying:

"Look around - there's only one thing of danger for you here - poetry."

I cannot honestly say that poetry has ever been a passion for me. Nor can I say that it has been a dangerous, subversive element in my life. But my experience with cancer has changed and continues to change me. Even now, I feel more open to possibilities and dimensions of life that never occurred to me before, one of which is the possibility of poetry.

Tonight, as I reflected on a topic for today's blog entry, I turned to those who write about cancer on their own blogs. One of those is Dr Craig Hildreth who today paid tribute to Neruda. The poem he chose is not the one which moves me this evening. Instead, I chose a section from Neruda's The Separate Rose, a book of poems inspired by his 1971 trip to Easter Island.

Today is that day, the day that carrie
da desperate light that since has died.
Don’t let the squatters know:
let’s keep it all between us,
day, between your bell
and my secret.

Today is dead winter in the forgotten land
that comes to visit me, with a cross on the map
and a volcano in the snow, to return to me,
to return again the water
fallen on the roof of my childhood.
Today when the sun began with its shafts
to tell the story, so clear, so old,
the slanting rain fell like a sword,
the rain my hard heart welcomes.

You, my love, still asleep in August,
my queen, my woman, my vastness, my geography
kiss of mud, the carbon-coated zither,
you, vestment of my persistent song,
today you are reborn again and with the sky’s
black water confuse me and compel me:
I must renew my bones in your kingdom,
I must still uncloud my earthly duties.

"I must renew my bones in your kingdom. I must still uncloud my earthly duties."

Those words reach me exactly where I am today, wondering about the future, wandering among thoughts of the present, and remembering the not-too-distant past. I am confused and compelled. From August to today, there has been a rebirth of sorts, and my hard heart does welcome the rain of December. Something is happening to me and I believe my co-conspirator in cancer has more to tell me.

Monday, December 11, 2006

An Unwanted Journey: Day 0383 - Exercise and Rectal Cancer

This is the first time I've read anything about exercise and the risks for rectal cancer.

A survey of 413,000 Europeans indicated that vigorous exercise or housework reduced the chance of having colon cancer...but it did nothing to reduce the likelihood of developing rectal cancer.

In a country like China, where exercise and nutrition are generally of a higher order than many western countries, only 25% of those diagnosed will survive 5 years, whereas in the western countries that percentage is 68%. And among the most prominent cancer killers in China is rectal cancer.

I guess what I learn from this is that sometimes second-guessing one's lifestyle and history for evidence of things one might have changed to avoid cancer is a waste of time. In my own case, my nutrition and exercise routines were pretty good, even though I have to admit that I was definitely overweight.

Now that my first "surveillance" colonoscopy has shown me free of any local recurrence of cancer, I am beginning to think about nutrition, exercise, hobbies and volunteer work, and occasionally obsessing about my vocation and the workplace environment. There are so many choices available to me again. But it seems that evaluating my cancer experience will be helpful in some decisions, not so helpful in others.

What is very clear is that I now have to take the phrase "cancer free" and begin applying it to my life in recovery. It will be a slow process, I think, but one every bit as complex as my life with cancer.

Sunday, December 10, 2006

An Unwanted Journey: Day 0382 - Evaluating my cancer experience

One of the best hobbies I ever had was participating in a local Toastmasters club. In fact, the only reason I left the club was to sing in a church choir which met on the same week night. This last year, I have neither attended Toastmasters nor sang in the choir. Most of the time in the evenings, I slept.

One of the things Toastmasters does especially well is speech evaluation. In each club, members are expected to learn how to provide evaluations for one another. There is no such thing as a "boss" in Toastmasters who pretends to know all things about making speeches. We are all there to learn and provide support for one another. Evaluating another person's speech is perhaps the single most important skill learned by anyone attending Toastmaster meetings, and, once learned properly, it is a skill with tremendous carry-over value for everyday life.

Now that I've finally had some good news, I have been thinking about an overall evaluation of my experience of diagnosis and treatment. It occurred to me that the principles I learned at Toastmasters might be applicable to an evaluation of my experiences with cancer. At the very least, it certainly couldn't hurt.

One of the first principles with applicability to cancer experience is to listen carefully. This might appear obvious, but when we are in the thralls of cancer treatment, listening to our bodies, to our moods, and to those around us can take extra effort and concentration. But it is energy well spent. Sometimes imagining that your body, your emotions, and your illness all belong to another person helps one to concentrate.

A second objective is to preserve the "other person's" self-esteem. This is difficult with cancer because we usually think of cancer as foreign invaders, something alien and other, something to be killed in battle. But when evaluating our experience, it is important to remember that, no matter how difficult and debilitating, cancer has provided us with useful life lessons. As long as we live, we are worthy of esteem and respect, no matter how much has been taken away. Sometimes other people imply we are damaged goods, worth less than before cancer, less able to assume responsibility or to manage. Untrue! Instead, we are worth more, better able to deal with life and death and the viscissitudes of our cancer experience and recovery.

If it is useful to provide criticism, do so gently, diplomatically, and always in the context of praise for one's accomplishments. In other words, criticize constructively. We are often far too tough on ourselves. Cancer can bring out that tendency even further. But if we sandwich suggestions for improvements with actual praise, our ego will be preserved.

In that context, growth is likely, probably even inevitable, but it is not instant. When we move into recovery, we are still travellers moving towards a destination. We are not instantly transported to that destination.

Friday, December 08, 2006

An Unwanted Journey: Day 0380 - Time to catch a breath?

Not a chance. Medically, there are still appointments to keep and doctors who want their piece of the pie. Today was the urologist. I like this guy. He helped me a lot when I was suffering post-surgical complications in the hospital in April of this year. And he prescribed Flomax to help me ensure I had urinary function for most of the time since I was discharged from hospital. But today, the appointment was just about a quick Q&A, giving me a prescription for more Flomax for another year (if necessary), and booking a follow-up appointment for a urinary ultrasound in March. It hardly seemed worth the time away from work.

And then there was work. Not a good day. You might think that the day after receiving such good news about my health there would be some carry-over. Nope. No respite. Just "so now that you're all better, here's what we want you to do next." Well, OK, that's the nature of things, I guess. I was just hoping for something better. But if there's one thing I've learned throughout this ordeal, no matter how much you might hope for the best, you need to steel yourself for the worst. I guess I need to apply that life lesson to the world of work too.

On the home front, things are busy, but good busy. My son is taking exams at university. My other son is trying to decide whether he can sleep in his bedroom downstairs tonight after last night's flooding from a leak in the water conditioner and the battery of high-speed fans we have set up to dry out the carpets. My wife and I are taking turns driving and picking up both the great young men in our lives. She's my partner and a better partner I couldn't hope for. We'll help each other catch our breath and put the business and uncertainties of life into perspective, one day at a time.

Thursday, December 07, 2006

An Unwanted Journey: Day 0379 - Respite From Worry

After slightly more than a year of diagnoses and medical tests which always seemed to bring me the worst news, today I had some very good news. My surgeon told me that the pathology report from the colonoscopy last week revealed no evidence of cancer at all. He also indicated that at the time of the colonoscopy, when he performed an "aggressive" biopsy, he was confident that he had discovered recurrent cancer in the tissue surrounding the anastomosis. He was so sure that in fact he called the pathologist to confirm that the tissue was clear. The pathologist was totally sure.

Evidently, there is a large growth of "granulation" tissue around the anastomosis, something euphemistically called "proud flesh"; in other words, an unusual amount of scar tissue. So, I'm clear of cancer, but the granulation tissue is something we'll have to watch over the next few months. In three months my surgeon will perform a flexible sigmoidoscopy to re-examine the entire circumference of the anastomosis. Until then, I can expect that the tissue will remain sensitive, occasionally producing some rectal bleeding. But it should gradually start wearing away.

This is such good news. I am so relieved. The surgeon confirmed that, had the biopsy proven to be malignant, I would be looking at further surgery, including the inevitability of a colostomy. Instead, I can look forward to continued recovery and, hopefully, a very long break from concern and worry.

Wednesday, December 06, 2006

An Unwanted Journey: Day 0378 - Ready for a new day

Yesterday, as the title for today's entry implies, I was at the Microsoft launch for Vista, Office System 2007, and Exchange Server 2007 at the Toronto Congress Centre. It was a great event, very informative, well managed, well attended (over 3,000 of us geeks) and lengthy. But I managed the trip there in the car, the six sessions I attended, lunch, and even a few minutes of the social event following the launch.

Today, was another matter entirely. It started with fasting before the CT scan and then waiting from 8:30 until 11:00 am for the actual procedure. The afternoon was then one of the very worst I've experienced this entire calendar year, possibly because of the barium solution I had to drink before the CT scan.

As a young boy, Santa always put an orange in the bottom of our Christmas stockings. Because oranges were hard to get this time of year, the taste of orange was always associated for me with Christmas. But the barium solution today, even though it was definitely flavoured with orange, did nothing to bring pleasant associations with Christmas. The only association was, as might be expected, with a very specific Christmas - last year's Christmas with cancer.

But I'm ready, ready for a new day, ready for a new year, ready for a new life cancer-free. Tomorrow, I'll find out whether that is a realistic hope. My surgeon should have the pathology report and perhaps even the results of today's CT scan to review with me and my wife.

But even while I wish for better times, better health, and maybe a better attitude, I have to remember that others are engaged in even worse memories of the season. One friend, for example, is recalling the death of her father a year ago today. Cousins are recalling the death of their father. And another friend is remembering the death of his father from colon cancer. Father Christmas has an entirely different meeting for them than it does for the majority of those celebrating this time of year. Those folks are also ready for a new day.

Monday, December 04, 2006

An Unwanted Journey: Day 0376 - Same Time Next Year

A year ago, I was in the middle of a series of medical tests, first to confirm the original diagnosis of a malignant tumour by my gastroenterologist, then to stage the cancer so as to determine the best treatment protocol. This year, I am engaged in another series of medical tests but with the goal of declaring me cancer free. Unfortunately, the first test, a colonoscopy on the 30th of November, revealed some strange tissue near the anastomosis of my low anterior resection, something which prompted my surgeon to take a biopsy as he had done about this time last year when he performed a sigmoidoscopy. That second biopsy last year confirmed that the tumour was definitely malignant. This year, I have an appointment on Thursday to see what the pathologist says about the biopsy taken a few days ago.

On Wednesday, I have a full chest, pelvic, and abdominal CT scan, again another test similar to what I had this time last year. There is no MRI scheduled this year. Instead, I have consultations with a urologist, an allergist, and my family physician who will be performing the first of my post-treatment complete physical examinations, something which will be done quarterly for the first couple of years. What this all means is that it will be very close to Christmas when most of the results of this round of medical tests are delivered to me. It's almost a mirror image of last year.

Is it any wonder, then, that my thoughts keep returning to events of a year ago, to the prospect of more bad news. Yes, I realize that there may be nothing but good news to come my way in the next few weeks. And I understand that there is little to be gained emotionally from speculating about a diagnosis of recurrent cancer. But realizing and understanding such matters and feeling them viscerally are two different things entirely. My reptilian brain stem is responding to fear, an emotion so basic and so primitive that the higher level functioning of the cerebral cortex waits its turn for my attention.

But blogging should be more about sober second thought, about reflection and not reaction, about thinking things through, not venting. But I think I'll wait for that...maybe Thursday would be a good time to think and write with greater clarity and perspicuity.

Friday, December 01, 2006

An Unwanted Journey: Day 0373 - Tributes

One of the books I've been reading recently is entitled Social Intelligence: The New Science of Human Relationships. The basic premise of the book by Daniel Goleman is that "we are wired to connect".

Today, with all its discomfort and disappointment, reminded me of how important our connections really are to our sense of identity and general wellbeing. Although I never name names on this blog, owing to respect for personal privacy (the exception being those who are already public by virtue of publication), I truly wish today that I could break that guideline. Why? Friends and acquaintances have written or called to express their solidarity with me and my family about my health concerns. I wish I could pay tribute to them individually, but that would break the rules. So, those of you who wrote or called, you know who you are and I pay tribute to you for proving Goleman's contention that we are wired to connect.

I've written previously about cancer and optimism in this blog, but today I am reminded that optimism is not a purely internal psychological phenomenon. It is dependent to some extent on significant others in our life. Because we are biologically predisposed to connecting with others, it should come as no surprise that others affect our moods greatly. In times of disappointment, a simple call saying "I'm pulling for you" or an e-mail saying "We think of you everyday" or a simple stop in my wife's office to say "I heard about what you are going through and just wanted to let you know I care" - those are ways in which we connect with and strengthen one another. Something psychological happens, to be sure. But something biological happens as well. Our spirits lift and we see things differently. Optimism increases and life seems better than it did even a few hours previously. I'm sure that if we were wired up to some machine measuring hormonal activity, we would see improvements in those hormones which influence good moods.

In addition to expressions of care and concern, there is also the wisdom of good advice. "So the doctor didn't say there was anything to worry about, did he? Well, worrying is probably a waste of time and energy, don't you think? If you can, maybe you should just wait one week and see what he says then." Yeah. The logic is inescapable.

So, for those who know who you are, thanks from the bottom of my heart.

Thursday, November 30, 2006

An Unwanted Journey: Day 0372 - My "Surveillance" Colonoscopy

Now there's a day I hope never to experience again. Almost 24 hours ago, I took my first phospho-soda as part of the bowel preparation requirements for the colonoscopy I had this morning. Then again, around 3:30 am, I had the other bottle. From midnight until just a few moments before my procedure, I was stationed nearby the washroom, feeling worse and weaker as time progressed. By the time of the procedure, I could barely walk. I don't know how much of the negative sensations I had were owing to having gone through surgery, but the overall preparation experience was definitely one I hope fades from memory quickly.

The experience of the procedure itself was different from last time as well - different hospital, different specialist (the surgeon for my low anterior resection), different sedative, and different results. The only thing that was the same is the sense of disappointment as my surgeon told me that there was something near the anastomosis that required him taking a biopsy. I won't have results of the biopsy for another week when we meet for a consultation in my surgeon's office.

Even though the sedative did make me groggy, I felt and saw almost everything this time, including a painful digital rectal examination following the colonoscopy itself. I spoke with the surgeon before, during, and after the procedure; we seem to get along reasonably well, but he obviously is concerned about what he found. Funny, though, the sedation left me feeling similar to last time - the news was disconcerting, but I was numb. Next week is when I suspect I'll be more nervous about the results of the biopsy.

The good news was that the colon itself was clear with no evidence of any polyps at all.

Still, this coming few days will be ones of "what if" scenarios playing out in my mind and in my conversations with my wife and sons. It could be bad. It the biopsy shows recurrent cancer, I will undoubtedly be subject to more treatment. The prospect of more surgery, radiation, or chemotherapy leaves me feeling cold. But, of course, I'll do whatever is necessary.

Tuesday, November 28, 2006

An Unwanted Journey: Day 0370 - Embarrassment

Even now, 2 months after the end of chemotherapy, things happen in my body that I have been unable to predict. Last night, for instance, I was up every half hour visiting the washroom from 2:00 am to the time I had to leave for work. While at work, I was very uncomfortable, not to mention tired. But the worst of it was that the urgency to visit the washroom was totally unpredictable. I was in the middle of a long meeting when the feelings struck without warning. Still, trying to escape as quickly as possible, I couldn't hide the expulsion of gas. Truly, truly embarrassing.

Thursday is the day of my annual follow up colonoscopy. Maybe it's some kind of psychosomatic function of worry. Maybe it's nothing but the new normal for a man with almost no rectum. If so, I guess I'll learn to live with it, embarrassment and all. But I don't really have anyone to ask about experiences like today now that I'm recovering. It's personal guesswork.

One of the books I've read in the past year talks about the dangers of universaling life's problems. I understand that some people do so. Occasionally I may do that as well. But these days, my bones, muscles, tendons are all complaining loudly. I'm moving like I'm 80 years old and have never exercised in my life. Is that universalizing? If so, I'm embarrassed to admit it.

Thursday afternoon, after a successful colonoscopy, I'll be thinking more clearly and particularizing my bodily complaints!

Sunday, November 26, 2006

An Unwanted Journey: Day 0368 - A New Hope

12.6 men die daily of colorectal cancer in Canada. It is the second leading cause of cancer death in Canada.

But today, there is reason to hope. The Canadian government has just announced a $260-million plan to equalize treatment across Canada where geography often means that state-of-the-art cancer treatment protocols are unevenly distributed to those most in need. Friday at the Montreal General Hospital, Prime Minister Stephen Harper announced a new agency called the Canadian Partnership Against Cancer would implement a new, 5-year strategy.

From a cancer survivor's perspective, the effort is truly admirable since it was conceived and developed by 700 cancer survivors and experts. The objective of the strategy and agency is to prevent, detect and treat cancer faster. The hope is that the new plan will prevent 1.2 million new cases of cancer and prevent 400,000 deaths from cancer over the next 30 years.

Current trends are staggering. Over 44% of men and 38% of women in Canada will develop cancer during their lifetimes. Over 24% of women and 29% of men will die of cancer. In the next 20 years, 3.6 million Canadians will get cancer and 1.7 million will die of the disease.

In my particular case, I have been extremely fortunate to have had the geographic advantage of living in the Region of Waterloo. The recently constructed Grand River Regional Cancer Centre was the location of all of my treatment, with the exception of surgery in the adjacent Grand River Hospital. Not all cancer patients in Canada have such advantages. But perhaps the new agency and the new national plan will make equal access to cancer treatment a more realistic goal in Canada.

Friday, November 24, 2006

An Unwanted Journey: Day 0366 - Anniversary

Friday was the anniversary of my initial diagnosis of rectal cancer by the gastroenterogist who performed my first ever colonoscopy. From the previous evening to late Friday evening, it seemed as though events were conspiring to remind me of how precarious life truly is, yet at the same time acknowledging how precious is the time we have.

On Thursday evening, my wife and I watched Grey's Anatomy, one of the best medical dramas on television these days. But you can't watch shows like that without thinking about life and death and being reminded of time spent in a hospital. I also called a family member during the day to arrange a weekend dinner of our families. During that conversation I was told of a possible sarcoma on the kidney of her spouse, in addition to the many other medical troubles he has experienced over the past ten years or so.

Friday morning, one of my colleagues wanted to talk about putting down his dog because of cancer. Later that day, another colleague came in to work for a short period of time, stealing a few moments away from his significant other who is battling breast cancer and who had just undergone day surgery earlier in the week to remove one of her breasts and some lymph nodes (which turned out to be malignant) under her arm. Two more reminders.

Then, Friday evening, I attended the First Annual HIV/AIDS Requiem held at our parish church. It was an interfaith remembrance service dedicated to the many who are struggling with AIDS and the many who have already succumbed to the disease. Buddhists, Muslims, Jews and Christians of a variety of denominations were all represented. The Primate of the Anglican Church of Canada, Archbishop Andrew Hutchison, and the bishop of the Huron diocese, Robert Bennett, were also there. And the choir of St. George's Anglican Church sang selections from Faure's Requiem throughout the service. Again, reminders of death, disease, and the value of community were all present in that experience.

Before and after the service, there were many hugs and kisses as parishioners and friends made a point of talking to me and asking how I was doing. So, no matter how much emotional intensity I had felt over the past 24 hours or so, the healing of interpersonal contact was there too.

It's been a long year, a tough year, one that I hope I never have to experience again. But, when I stop to think about how I've changed and what is important to me now, I think this year was also one of great personal growth and illumination. I have never felt closer to my family and more loved than I do now. Whatever the level of infirmity I have undergone and continue to experience, those blessings more than make up for the troubles of 2006.

Thursday, November 23, 2006

An Unwanted Journey: Day 0365 - A Year of Cancer

Today is a major event for two of my nieces. They are twins and turn 31 today. That is monumental and truly worth celebrating. But...I find myself thinking - selfishlessly, no doubt - less about their moment in the sun than about my own anniversary tomorrow of my diagnosis of rectal cancer by my gastroenterologist.

A year ago today, I had my first ever colonoscopy. As I awoke from the effects of the sedative, I was told that the results indicated a fairly large tumour that was very likely to be cancerous. I began research immediately and thought that I was doing well in my response to the news I received in my groggy state. But the next day, after deciding to go to the gastroenterologist's office on my own, I heard the words, "I think you have cancer." Despite thinking that I was ready to hear the bad news, I wasn't ready at all.

The gastroenterologist showed me the photographs taken during the procedure of the tumour. He described what he found. Then he said something like, "I'm sorry. It's unusual for a man your age to have a tumour like this. But I think it is cancer." I was numb. I thanked him for his work, found my way to my car and then collapsed emotionally. After calling my wife and then my parents, I struggled back to work and then left for the day.

Even now, as I recall those events, I find the tears welling up inside. That evening, I was faced with talking to my sons about the diagnosis and what was ahead for all of us. Those were some of the most difficult conversations I've ever had. My wife and sons were devastated, as I was, but we began the process of preparing for next steps as soon as we could.

This past year has been incredibly difficult both physically and emotionally. My family has rallied around me and provided more loving support and care than I could ever have anticipated. I needed it, especially during the various treatment stages, beginning with combined chemoradiotherapy in January and February of 2006, surgery in late March, post-surgical complications throughout the month of April, gradual recovery in May and June and then chemotherapy from June to the end of September. I am recovering well now, but there are times when I feel so much older and more frail than when this process began.

My health is returning slowly. I feel pretty good these days, but it will only be one more week until I have another colonoscopy, this time with my surgeon, followed by medical appointments in December for a full physical, a CT scan of my chest, pelvis, and abdomen, a consultation with an allergist and a urologist - in other words, until close to Christmas, cancer and recurrence will again be on my mind almost constantly. My wife and sons will also be facing their own fears and uncertainties in the next few weeks, wondering what each appointment will mean. Will there be good news or bad news? Am I truly recovering or just putting in time until something else surfaces?

Truly, I think the news will be good. It's what I am expecting. But, like I indicated, thinking about this past year, especially the first few days after my initial diagnosis, is hard for me.

Monday, November 20, 2006

An Unwanted Journey: Day 0362 - Stem Cell Hope

A Canadian research scientist, John Dick, from the University Health Network in Toronto, has recently demonstrated that a very small percentage of colon cancer cells are responsible for growing cancerous tumours. Previous research had shown that the cell marker CD133+ was expressed on cancer stem cells for brain and prostrate cancer. More recent studies have shown the same for colon cancer.

Evidently these stem cells represent about one in 50,000 tumour cells and one in 262 CD133+ cells. What this means is that current therapies for colon cancer are sometimes ineffective because they do not target directly the cells responsible for the spread of colon cancer. As most people know, colorectal cancer is the 2nd leading cause of cancer deaths in North America. Colorectal cancer recurrence is especially common. But if this research is indicative of new directions in therapy, the heirarchy of colorectal cancer cells in incredibly important in developing those therapies.

Colon cancer initiating cells (CC-IC) may well be found in only an incredibly small percentage of the tumour's overall mass of cells. Two to three percent of the total cell mass may well be responsible for making the cancer metastasize. These cells also demonstrate resistance to radiation and promote vascularization of the tumours.

Both Dick and researchers in Italy will be working on research to determine whether these cells mutate from normal colon cells or are part of a developmental regression of differentiated cells.

Sunday, November 19, 2006

An Unwanted Journey: Day 0361 - A Vaccine?

I've done quite a bit of research into colorectal cancer during the past year. At one point, I read about a promising line of research which promised to boost the body's own immune system to find cancer cells. This week, in Clinical Cancer Research, there was further evidence that research is progressing briskly.

The vaccine used in the clinical trials simulated a protein called TNF-alpha, according to a British immunologist Lindy Durrant. Durrant has been working on this research for over 10 years. That in itself shows tremendous perseverance and commitment. The promise of a vaccine must have sustained those efforts over the years.

The idea for the vaccine came from a colorectal cancer patient with metastatic lesions on the liver who, nonetheless, survived for another 7 years after the metastasis was discovered. Usually, patients die within a year of the spread of the primary tumour. The vaccine she developed stimulates the production of T-cells which then produce proteins called cytokines that destroy cancer cells.

About two-thirds of the patients treated with the vaccine in the clinical trial showed improvement but survival was not one of the effects studied. Durrant is hoping that a newer and longer clinical trial will be funded allowing her to directly measure the effect of the vaccine on survival results. Why there wasn't more attention paid to survival in the first clinical trials does seem more than a little odd.

Perhaps the best vaccine is a simple diet of fish. A recent meeting in Boston of the American Association for Cancer Research found that men who ate several servings of fish each week had lower risk of colon cancer. This may be owing to the higher amounts of omega-3 fatty acids. But it seems that you must eat fish at least 5 times a week! After 19.4 years of follow-up, men who ate 5 or more servings a week had a 40% reduced risk of colorectal cancer than those men who ate fish less than once per week.

So, I guess I'll be eating more tuna and salmon sandwiches at lunch these days while eagerly awaiting news on vaccine development.

Friday, November 17, 2006

An Unwanted Journey: Day 0359 - Shared Fate

One of the good things about being a cancer survivor is that other people who have received a cancer diagnosis or have a loved one just diagnosed feel comfortable talking to me about my experiences. I can honestly say this is a tremendous honour. I value being able to help another person as they begin their journey and I am humbled that somehow my experiences can be of value to them.

I think I am also more aware of how cancer affects the lives of others. We all go about our daily lives, most of the time blissfully unaware of the worry and uncertainty felt by so many around us whose lives have been turned completely upside down by cancer. But when people know that we have been touched by cancer, there is an opportunity for them and an opportunity for me. These bonds of friendship and commisseration may be short lived, but they are incredibly intense and honest. The shared intimacy of a shared fate binds us together in ways that are difficult to convey unless you have experienced it yourself.

This shared fate is something I have experienced at other times in my life too. In fact, shared fate is the name of a book which was instrumental and incredibly helpful to my wife and me when we decided to adopt children. The idea, in that context, of the title was that there is something which links the adoptive parent with the birth parent. For the birth parent, it is the untimely nature of fertility. For the adoptive parent, it is the tragedy of infertility. Somehow, these two seemingly disparate experiences have the potential in open adoptions of creating a deep bond between birth and adoptive parents, all embodied in the child, the one who signifies both the tragedy and the treasure of adoption.

Similarly, when we share our experiences of cancer diagnosis, our trials and tribulations, and possibly our triumphs, we adopt one another into a very close circle of intimacy that others simply cannot fully appreciate the way we do. For me personally, it is as if the intensity of my own diagnosis and concern surfaces again with all the attendant emotion and uncertainty. The vulnerability is there again, resurfacing simply as a response to the story being shared with me.

I hope I never lose this sensitivity to others. I trust my experience with cancer will enable me to serve others similarly diagnosed for many years to come.

Wednesday, November 15, 2006

An Unwanted Journey: Day 0357 - Feeling Secure

Security has been on my mind recently. The last breakout session of the business conference that I attended last week in Las Vegas was all about the security features of our ERP software where I work for a living. Then, the very next morning, as I connected remotely to our business network, I discovered a security breach, the upshot of which has been the focus of this week's work and discussions. Finally, with only two weeks left until I have my next colonoscopy, I'm reflecting on what security means to me in regards to my unwanted journey.

Security is partially a feeling of having a future, mainly one that is unclouded by doubt and despair. When one is diagnosed with cancer, the clouds appear on the horizon immediately. Often, those clouds become thunderheads, maybe even twisters, in the imagination. That, of course, means doubt, lots and lots of doubt, about the future.

In the real world, cancer patients and survivors often tie their feelings of security to medical test results, sometimes to bodily sensations. Although, in the latter case, I find it difficult to trust my bodily sensations since they didn't tell me anything about having cancer in the first place. Medical test results, on the other hand, seem to have some scientific merit and reflect a reality which bodily sensations cannot match. What are my blood counts? What do the MRI and CT images show? What is that spot in the X-ray? Were there any polyps you discovered during the colonoscopy? How does the anastomosis look? What does the scar tissue in the colon and rectum look like now eight months later?

As we close in on Christmas, I'll be thinking a lot about this time last year when I was undergoing a barrage of medical tests and imaging. Unlike the festive lights of the seasons, my future didn't look bright at all. This year, I suspect that I'll be much more optimistic about my future - in other words, more secure.

But security is truly an illusion. Last night, my wife and youngest son and I had a brief discussion about the inevitability of tragedy in our lives. We normally don't live with the fear of something tragic about to happen, but it does happen nonetheless, whether it be the death of a loved one, the loss of a friend or job, the onset of a life-threatening disease, an accident, or a host of other possibilities. Our security is really just a sense that the overall balance in life will be good...and that part of the feeling of security is true and accurate. Life is good. It is often beautiful. And it is a treasure we should all value, as consciously as possible.

Sunday, November 12, 2006

Taking it easy in Vegas

It's taken almost a year, but I think I'm finally ready to try an occasional personal blog that isn't about an unwanted journey. I will continue to write about cancer, colorectal cancer in particular, for quite a long time, but part of my recovery process means regaining a sense of normality. And that means that my blogging activity should also be moving in other directions. That has been happening recently on my corporate blog, Bringing Closure, but it will also happen here. The visual cue will be the title - today's entry, for example, says nothing about An Unwanted Journey.

Our business conference ended yesterday at lunch. I've been good about getting my much-needed rest. Yesterday, though, it was time to have some fun. So, my business colleagues and I went back to the Stratosphere to catch a complimentary viewing of Viva Las Vegas and then headed out to the other end of the strip to visit some hotels/casinos like the Luxor, the Excalibur, New York New York, and the Bellagio. We also took in a performance of Tournament of Kings at the Excalibur where we participated in a feast of game cornish hen, tomato soup, potatos, and broccoli. But the real centre of focus was the medieval joust and battles on the arena right in front of us (we were in the front row).

Today we went to the Venetian and the Wynn to get some souvenirs for our family and tonight we're off in the other direction. We still haven't done any gambling yet, but there may be a little time to do that afterwards.

While resting in my hotel room this afternoon, I watched a show about the history of entertainment and casinos on the strip. It reinforced a gradually growing fascination with the history of the Entertainment Capital of the World. What has been done here in the desert is absolutely phenomenal, despite the many obvious shortcomings of Sin City. To visit a hotel like the Wynn illustrates how incredible this development has been and continues to be.

Our cab driver told us that over 45 million people visit Las Vegas each year. He also told us about new developments like the Trump Tower, the construction near the Bellagio, the new Wynn towers, and the end of the Stardust. Clearly, nothing is hindering the growth of the city and the strip in particular. My colleagues and I are taking it easy here, but many, many others - both visitors and those who make Vegas their home - are not taking it easy. They are building a dream, an unabashedly free-market, capitalist dream dependent only on the flow of capital.

Monday, November 06, 2006

An Unwanted Journey: Day 0348 - Gambling on Recurrence

This week I'm off on a business trip to Las Vegas. Yeah, that's right...a business trip! Will there be some gambling involved? Maybe. It depends on whether the Fun and Sun hotel/casino package's promise of $150 of casino dollars can be used for gambling. If so, then I will certainly be doing some evening slot machine analysis. I'm not much of a gambler, so it's bound to be experimental.

Gambling with cancer recurrence is something else again. Certainly if I were to decide that since my treatment was apparently successful, I can do whatever I like with nutrition and fitness, then that would constitute gambling with recurrence in my books. But beyond that fairly obvious observation, it becomes much harder to know whether one is gambling or simply living.

What would you say, for instance, about eating red meat or drinking wine? Does that constitute gambling? What about a failure to eat lots and lots of dietary fibre? Or greens? Or having a beer on the weekend? What about swearing at stupid drivers on the road? Is that needless stress in one's life? Should I become a dedicated yoga enthusiast? Should simply walking and doing some weight training constitute gambling?

I don't know the answer to most of these questions, nor do I even know if they are worth asking. All I know for certain is that the life given to me should be lived consciously and deliberately with abundant gratitude. While I'm in Las Vegas, I'm pretty sure that means at least 2 or 3 great meals with my business colleagues, perhaps tipping a glass or two, perhaps enjoying some typical Vegas entertainment, all the while being thankful that I don't have to live there!

Saturday, November 04, 2006

An Unwanted Journey: Day 0346 - The Cancer Code

I've been using mind mapping software for almost as long as I have used Microsoft Office software. If you aren't familiar with mind mapping, it's a technique for note taking in which graphics and the free flowing of ideas are paramount. Mind mapping has been around since the 1960s when Tony Buzan began popularizing using diagrams with an image in the centre of a page and ideas radiating from that centre. Buzan claims that he began taking notes using the "radiant" graphic approach in his university days out of frustration with the traditional note-taking approach. The idea was that key words, images, colours, and associations work far better than simple lists and pages of elaborate text.

Personally, I have used mind maps for note-taking, brainstorming, agendas, teaching, strategic planning, presentations, and hyperlinking of documents in various formats. But because most of my work involves computer use, I quickly sought and found software to do what was traditionally conceived as a manual, almost artistic, endeavour. MindJet's MindManager quickly became my desktop mind mapping software of choice.

The connection between mind mapping and cancer is not a personal one. Instead, it is about the originator of MindManager, Michael Jetter. In his book The Cancer Code: How a journey through leukemia led to software that changed the way people work, Mike and Bettina Jetter document how his personal battle with cancer coincided with a lifework project to create software enabling mind mapping on the desktop. Today, with over 500,000 customers world wide, MindJet's Chief Technology Officer is Mike Jetter. This is a book I recommend, especially if you have an interest in inspirational cancer survivor stories as well as an interest in productivity software.

Wednesday, November 01, 2006

An Unwanted Journey: Day 0343 - Risk of Recurrence

As we enter the month of November, I'm anticipating my first follow up procedure, a colonoscopy at the end of the month by the same surgeon who performed my low anterior resection in late March of this year. A recent press release in the UK claims that the most significant factor in a recurrence of a cancerous tumour in the rectum and for life-expectancy at 5 years after surgery is the quality of the surgery itself. But, in addition, it found that a pre-operative chemo-radiotherapy combined with the best quality surgery could result in less than 1% of patients experiencing cancer recurrence within 5 years of the surgery.

I have every reason to believe that the quality of the surgery performed on me was of high quality. I also believe that the treatment regime recommended to me of preoperative chemo-radiotherapy, surgery, and post-operative chemotherapy was the best, most up-to-date regime possible at the time. Not only that, but my confidence in the recovery recommendations and my followup team is very high.

Whether this means I should consider myself a likely candidate for the less than 1% recurrence rate group or not is obviously something that only time will tell. But it is something worth pinning my hopes to.

Tuesday, October 31, 2006

An Unwanted Journey: Day 0342 - Colondar

Scarred. Yes, having undergone surgery for an low anterior resection, I am scarred. Or, as I often say when asked, "I have one huge, wonkin' scar in my abdomen." It's really long and makes me feel quite self-conscious when even the thought of wearing a bathing suit comes to mind.

But there are other, probably smarter, people than me who have also undergone resections who realize that the scar is a badge of honour and a symbol of survival from the second leading cause of cancer death in North America. The Colon Club, at, publish an annual calendar with photographs which actually celebrate their abdominal scars and tell stories of survivors (not all the photographs are of scars!).

I never would have thought of something like this, but after getting used to the idea for a little while, I think it's a great idea. The stories are especially inspiring. There are tales from people with Stage 1, 2, 3 and 4 diagnoses.

The web site is designed to educate people about colorectal cancer. It includes crazy projects like the calendar, a 40-foot colon, and a Rolling to Recovery inline skating marathon by Molly McMaster, a colon cancer survivor diagnosed at age 23. There are even online copies of colondars from previous years.

A great idea and a fabulous educational resource.

Sunday, October 29, 2006

An Unwanted Journey: Day 0341 - Not Knowing

On one of the email groups to which I subscribe, there has recently been some discussion about tolerance for ambiguity, especially in regards to questions about the existence of God, life after death, the meaning of life, etc. To summarize, it seems that fundamentalists and atheists are both strident in their affirmations and their certainty about such ultimate concerns (as Paul Tillich put it, "faith is the state of being ultimately concerned."). One cannot be agnostic without jeopardizing one's moral position - this is a truism for both groups. The only alternative appears to be development of a comfort level with ambiguity, for tolerating a state of not knowing.

For cancer patients and cancer survivors, not knowing is the normal state of affairs. We don't know why we got cancer. We don't know why we survived and why others don't survive. We don't know whether treatment will be effective. We simply don't know about most of the issues surrounding our experiences with cancer.

Asking why isn't just about survivor guilt, although that is certainly one aspect of what is happening with me. It's also about delving into one's spiritual roots. One reason we do so is to regain a sense of control. That sense of control may be the key ingredient in why fundamentalists and atheists share common ground. But with cancer, the sense of control and certainty is shattered.

Tolerance for ambiguity or not knowing is an acquired skill. It is definitely not about submitting to an external authority. Instead, it is about asking the tough questions, about putting established authorities on the hot seat without necessarily expecting a resolution, about relishing the journey of question-and-answer, about holding on lightly, about what Edward de Bono calls prototruth - the best we can do after our latest deconstruction. To do this requires a minimal level of maturity that is often missing among the young and certainly absent among those who demand unequivocal answers to questions like "Was Jesus the Son of God?" or "Did I bring cancer on myself?"

In my personal journey, tolerance for ambiguity has been a hallmark of the development of my spiritual understanding. But it was with the advent of a diagnosis of cancer that I had to face the life-threatening reality of not knowing. In fact, even now, during my recovery phase, I find I have to continue with an exercise routine to strengthen my tolerance for ambiguity. Just because I have survived thus far is no guarantee that I will survive in the future, nor is it a guarantee that I won't fall back into a fundamentalist desire for certainty. I have to exercise not knowing or what the great English mystic called The Cloud of Unknowing in order to remain psychologically healthy.

Saturday, October 28, 2006

An Unwanted Journey: Day 0340 - Survivor Guilt

For the first time in many, many years, I will not be at home with my family on Remembrance Day. Sure, I'll have my poppy and I'll be remembering the sacrifices of those who gave their lives in the cause of freedom and democracy, but I won't be home with my loved ones. It is the faces of my wife and children that are most poignant when I reflect on what soldiers sacrificed.

The phrase that comes from the Tom Hanks character, Captain John Miller, to Private James Ryan in Saving Private Ryan near the end of the movie, comes to mind: "Earn this."

Soldiers who have survived when many of their comrades died are often immediately grateful that they are able to continue with their normal lives. But as time progresses, they often experience survivor guilt, the sense of disentitlement to life. Sometimes, that translates into a sense that their survival must now be earned, sometimes, sadly, nothing they do seems to compare with the gift they have been given.

This happens to cancer survivors as well. In fact, if my experience is indicative, the longer I survive the less entitlement I feel for my survival. Just yesterday, for example, our family learned of the death of a high school teacher at age 33 from cancer. Both my sons had studied Spanish with her. She leaves a husband, three small children, and a host of students whose lives she enriched.

"Earn this."

I have been wondering lately why I am almost always on the verge of crying. I'll watch a movie or television show or hear a newscast or read a story and my eyes will well up. I can't control this. But maybe it has something to do with survivor guilt. Why me? Why am I seemingly beating back an advanced colorectal cancer while so many others succumb? What makes me so special?

Nothing, really. I just hope I can earn the fortune given to me.

Friday, October 27, 2006

An Unwanted Journey: Day 0339 - Red, Red Wine

The American College of Gastroenterology will be meeting in Las Vegas this coming Monday. I'll be in Vegas a week from this coming Tuesday. Kwinky dink? I think not. Many of those gastroenterologists gathering in Vegas will be toasting a new study with glasses of red wine. I'll drink to that! In fact, when I'm in Vegas, I think I might have a glass of red wine every day, sometimes even while contemplating the same study celebrated by gastroenterologists.

What is it about this study? Well, the study tells us that three glasses of red wine or more per week reduce the incidence of abnormal growths and cancers of the intestinal tract. Dr. Joseph Anderson, an assistant professor from the State University of New York at Stony Brook, discovered that 9.9% of wine abstainers, 8.8% of white wine drinkers, and only 3.4% of more-than-three-glasses-of-red wine-per-week drinkers had colorectal neoplasia - cancers or polyps that become cancerous.

The key ingredient is apparently resveratrol, a component of the skins of grapes and a polyphenol found in red wine.

Dr. Anderson will likely try to spoil the fun - you know, totally ignoring "what happens in Vegas stays in Vegas". He will likely suggest that people not start drinking red wine. They should exercise instead. Hmmm...maybe if I have a glass or two of red wine while walking on the rebounder while watching movies on the DVD player...yes, that would do the trick!

Thursday, October 26, 2006

An Unwanted Journey: Day 0338 - Choosing Your Poison

I continue to read Leroy Siever's My Cancer blog every day. He is an amazing individual who has suffered far more than I have endured during my treatment for rectal cancer. Right now he has to decide whether to continue his current chemotherapy regime or give his body a rest for a couple weeks before embarking on another cycle. Avastin is a major part of his treatment protocol. Unfortunately, that alone tells you a little bit about what he faces. Avastin is primarily used in treating metastatic colorectal cancer, something I hope never to experience.

It seems that a lot of the current research in colorectal cancer studies has to do with metastatic cancer, especially in chemotherapy. One report I read today is an excellent example. It's about Vectibix, a monoclonal antibody that lengthens the time to disease progression or death from 60 days to 96 days. When viewed in terms of percentages, it seems remarkable - a survival time approximately 50% greater than with standard treatments. But when viewed in terms of overall efficacy, it hardly seems worth the effort - 36 more days, days that are probably marked by nausea, fatigue, and the whole host of chemotherapy side effects. But, I suppose when faced by death, having an extra month isn't such a bad proposition.

Cancer patients dealing with chemotherapy are often faced with decisions that cast a twist on that common phrase "choosing your poison". Very often, especially in the case of metastatic disease, the medical oncologists cannot state unequivocally whether one or another treatment regime will produce beneficial results for the individual patient. There are simply too many variables to be sure about the outcome. That means that the decision to participate in a regime becomes a guessing game, one in which the patient has to assume even weightier decisions.

Another recent study from Denmark casts a light on how patients make these kinds of decisions. Normally, when faced with a choice of taking a drug orally or submitting oneself to intravenous therapy, patients will choose the oral medication. But the Danish study indicates that many patients chose to take 5-FU (fluourouracil) and leucovorin intravenously rather than Xeloda orally, primarly because they experienced less toxicity from the standard 5l-FU treatment.

This rings true with me. When faced with a choice between two types of drugs, most cancer patients will choose the one that is less toxic, even if the administration of the drug is less appealing. But when faced with a choice about taking a treatment or doing nothing, most will choose the treatment, no matter how toxic the results. I hope never to have to make choices like that, but my thoughts and prayers are with those like Leroy Sievers who is faced with such decisions regularly.

Wednesday, October 25, 2006

An Unwanted Journey: Day 0337 - 5 Year Recurrence Rates

Fear of recurrence is one of the most powerful emotions experienced during recovery. Because I was warned about such emotions prior to entering this transitional period, I think the impact is less severe than would otherwise be the case. I do worry occasionally about recurrence, but for the most part I think I have a relatively healthy and realistic attitude about the future.

Next month I will have another colonoscopy conducted by my surgical oncologist, the person most familiar with the anatomy of my colon and rectum. I am actually looking forward to this, primarily because I anticipate that no polyps will be found and that everything on the "inside" is clean. Then I will wait another 2 years for the next colonoscopy, followed by a 5 year wait.

Fortunately, a recent study from Indiana University has found that the chances of having colorectal cancer 5 years after a colorectal screening with no precancerous growths or polyps found is very low. Followup screening is a somewhat contentious issue among gastroenterologists, the American College of Gastroenterology recommending a 10-year interval rather than the standards used in Ontario and British Columbia. Those two jurisdictions have moved in the opposite direction and have studies supporting the change.

From my personal perspective, the more frequently I have colonoscopies, the better. It is the gold standard; nothing compares to what some term "optical" colonscopies, even the more recently favoured "virtual" colonoscopies. Patients who fear recurrence, and especially those like myself who have endured radiation, surgery, and chemotherapy, are quite willing to undergo the indignity of a colonoscopy just to assure themselves that their worries are without foundation.

Wednesday, October 18, 2006

An Unwanted Journey: Day 0330 - The Bottom Line

I tried completely eliminating Imodium from my daily pill popping diet. Bad idea.

This past week, I have been dismayed to find myself in the washroom at least a dozen times each day at a bare minimum, mostly in the evenings. Part of that experience may be due in part to attention -clearly, I have more time to devote to how my body feels in the evenings after I've come home from work. But that's only part of the story. Another major reason for the frequent visits I've come to associate with the effect of Imodium on gastrointestinal peristalsis; in other words, the bowels become more active without the depressing effect of the medication. That alone is enough reason to continue some pill-popping.

Frequency also has a direct correlation to soreness of the bottom. Another good reason to continue with the medication.

What all of this means, I suppose, is that I am discovering that I don't really know what a normal life will be yet. To some extent, I am dismayed by the thought that my life is irrevocably changed. If my current bowel habits, for example, are indicative of the future, I will have to adapt my lifestyle dramatically.

I strongly suspect that some aspects of what I am experiencing are not due to continuing side effects, but are related to the surgery itself. Having lost most of my rectum and all of the mesorectum, as well as part of the sigmoid colon, the experience of defecation has changed and will never be the same. For instance, the sense of urgency that everyone experiences is far more urgent for me than it ever was before surgery. I literally have far less time to make that visit to the washroom than ever before. This means that meetings can become a problem, long telephone conversations, seminars, air transport, etc. I suspect it also means that I will have to be extremely careful about diet.

I can adapt and I will adapt. I only hope that I will know soon what is temporary and what is permanent in my recent recovery.

An Unwanted Journey: Day 0330 - Shame on Canada

CBC has reported recently on Canada's leading role in opposing a proposal to restrict international sales of asbestos, a known carcinogen and almost always the direct cause of mesothelioma.

Canadians, and especially the Canadian federal government and the Quebec provincial government, should hang their heads in shame.

It's not as if the link between cancer and asbestos is news. We've known unequivocally of the carcinogenic properties of crocidolite asbestos (so-called "blue asbestos") since at least 1960.

What may be news to readers (it certainly was news to me) is that Canada is the only western nation that exports asbestos, something which associates our nation with Russia, China, and Kazakhstan. This past week, at a convention in Geneva for parties to the Rotterdam Convention, a treaty for restricting trade in toxic substances, Canada led opposition to adding chrysotile asbestos to the list of toxic substances. Even though asbestos and asbestos products are banned in Canada and the Canadian Environmental Protection Act of 1999 lists asbestos as a toxic substance, we still export more than 90% of the asbestos mined in Quebec to places like India and the Philippines, places where adequate laws and regulations limiting the use of asbestos either don't exist or aren't enforced. This is shameful behavior!

The World Trade Organization has already ruled against a challenge put forward by Canada against a ban on all asbestos products in France. The WTO ruled that "no minimum threshold of level of exposure or duration of exposure has been identified with regard to the risk of pathologies associated with chrysotile." But despite this, Canadian tax dollars - to the tune of $20 million - are used to support the industry lobby group called the Chrysotile Institute.

As someone just recently discharged from a regional cancer centre and having received treatment worth in the hundreds of thousands of dollars, I am ashamed of our country's hypocrisy in the promotion and sale of a know carcinogen to developing countries.


The Canadian federal government and Quebec provincial government position is supposedly based on claims from the Chrysotile Institute that the chrysotile form of asbestos must be distinguished from amphibole asbestos, the latter supposedly being the only demonstrated culprit in mesothelioma. But other studies dispute that claim. See, for example, a major 25-year longitudinal study conducted in China linking chrysotile asbestos exposure with mesothelioma: "As the results indicate, we found no evidence in support of the amphibole contaminant hypothesis. To the contrary, a strong potential for chrysotile asbestos alone to cause lung cancer and mesothelioma was suggested."

See aslo Chrysotile Peritoneal Mesothelioma.

For more information about chrysotile asbestos, see Mesothelioma Information.