Mixed Member Proportional

How do you actually vote in provincial and federal elections in Canada? If you're anything like me, sometimes you vote for a person, sometimes for the party. But more often than not, I tend to vote strategically for the party that best represents my own views about current issues.

Now in Ontario we're facing a referendum on 10-Oct-2007 in which we can vote for one of two options:

1. continue exclusively with first-past-the-post election results


2. continue with first-past-the-post in local ridings as well as a vote for a party

The clear advantage of the mixed member proportional scheme recommended by the Citizens Assembly on Electoral Reform is this: all our votes for political parties will count, not just the ones for the party representative with the plurality of votes in your particular riding.

Here are some other reasons why MMP makes sense:

• MMP has multiple-party support in this Ontario provincial election campaign.


• most democracies modified exclusive FPTP over a century ago


• all citizens are entitled to representation, not just those who voted for the representative with the highest number of votes


• most votes cast in any election in Canada, federal or provincial, elect no representative


• many majority governments are not truly results of majority popular voting (in the current provincial legislature, for example, the Liberals have 70% of the seats with only 46% of the popular vote)


• legislatures do not yet have appropriate representation for women and visible minorities


• without proportional representation, voters tend towards apathy and cynicism

What bothers me most about this referendum campaign in Ontario is that there is insufficient discussion of the issue. We read occasional newspaper articles, mainly from those opposed to MMP, but very few know why the Citizens Assembly presented MMP to the Ontario electorate - in fact, only 12% of the electorate knows anything about MMP at all.

Here's how the vote will work under MMP.

An Unwanted Journey: Day 0681 - Two years, moment-by-moment

Two years ago today, I was in Toronto at a TechNet tour at Paramount theatre, learning a little about the forthcoming Windows Vista, the XBox 360, and Windows Mobile 5.0. Einsteinfest was also underway in Waterloo at the Perimeter Institute as an alternative to the annual Kitchener-Waterloo Oktoberfest. And I was waiting for an anticipated trip to San Diego followed later in the month by a colonoscopy.

It's amazing how much can change in a mere 730 days. Since then I've been diagnosed with rectal cancer, received radiation, undergone surgery, suffered through post-surgical complications, been treated with chemotherapy, lost 30 pounds, gained it back, and begun losing weight again; I've watched as my aunt lost a foot to melanoma, retired from co-founding a regional IT Pro user group, struggled back into full-time work and rejoined the IT Pro user group executive, written many, many blogs about cancer experience, and been discharged from care at the Grand River Regional Cancer Centre twice.

But here I am, alive, and celebrating Canadian Thanksgiving with my immediate family. I've had much to be grateful for in these two years, some of which is terribly obvious, some of which is the consequence of attitude adjustment and thereby less apparent. This long weekend provides me with an opportunity to reflect on the course of the past two years, lessons learned, and new directions available to me.

When I read my own posts for the past two years, I'm struck by the range of feelings and the contingent nature of conclusions I reached. One thing for sure, as I reread these entries, is that I realize I cannot take myself or my "conclusions" too seriously since they keep shifting. I look for directions and development, hoping to find maturation of thought and feeling, but often finding nothing more than someone buffeted by live's circumstances and doing his best to figure it all out. I find myself as an example that who we think we are is mainly ephemeral, a mist blown about like the fog of an early autumn morning.

True, there is something that is constant as well, patterns of temperament, habits of thought and behavior, and propensities for verbal descriptions. But the bottom line of the two-year review is that I am what I happen to be at a particular moment in time. Take it or leave it, what you get in this unwanted journey is me in the moment, nothing more, nothing less.

And for that, too, I am thankful. That changing me is just an accelerated version of what would otherwise been the case without cancer. Yes, I dearly wish things would have been better in a variety of ways for the past 730 days. But they have by no means been all bad. Even the worst of this experience with cancer has meant flashes of illumination and moments of discovery and realization. And at this particular moment, I feel optimistic about my health and my options for the future.

For instance, tomorrow we celebrate Thanksgiving Sunday by going as a family of four to Martini's Restaurant in Kitchener. I'll be eating something from the menu that is whole foods and plant-based while the others in my family will undoubtedly partake of the turkey, dressing, mashed potatoes and typical fare for the season. I'll look across the table and realize that I'm a rich man. I have a wife whom I love dearly and who loves me, two sons who have become smart and mature young men whom I also dearly love and who also love and respect me. We are very different people, different from who we were two years ago, different from each other in many significant ways, and different from who we will become. But this weekend, in this place, we're together, being thankful and enjoying the moment.

An Unwanted Journey: Day 0676 - Scientific Reductionism

"This gets to the heart of reductionism in science. As long as scientists study highly isolated chemicals and food components, and take the information out of context to make sweeping assumptions about complex diet and disease relationships, confusion will result. Misleading news headlines about this or that food chemical and this or that disease will be the norm. The more impressive message about the benefits of broad dietary change will be muted as long as we focus on relatively trivial details." - T. Colin Campbell, PhD, The China Study, p.286

I am a regular subscriber to Google Alerts using keywords like colorectal cancer, cancer + survivor, and Canada + cancer. Over the past year or so, I have received hundreds, perhaps thousands of news items publishing "this or that" scientific discovery about cancer drugs and treatment, about inspiring stories of survivors and patients, and about dietary and nutritional studies. In the past few weeks, especially, I have been reading about how fruits, vegetables, and dietary fibre probably don't help cancer survivors. Here is just one study published recently by the Journal of the American Medical Association (JAMA) which claims that breast cancer survivors and cancer recurrence aren't affected, at least in terms of statistical significance, by increasing intake of fruits and vegetables. Actually, this is one of the best that I've opened up and perused recently. Most of them merely regurgitate popular press summaries in which fruits, vegetables, and fiber are listed as having minimal impact on cancer recurrence.

These studies and publications are typical of the scientific reductionism which confuses everyone about the effects of broad dietary change. The Nurses' Health Study is perhaps the most well known, especially to those affected by breast cancer.

Here's the problem in a nutshell. When the general public reads studies and notices about "this or that" nutritional element, most of us are looking for a magic bullet. We want to know what to add to our existing, unchanged diet that will cure us or make us resistant to certain diseases. Most of these studies contradict one another, so we're left confused and frustrated. We're told that fat, for instance, increases the likelihood of contracting breast cancer. Then the next moment we're told that modifying dietary fat doesn't appreciably affect the onset of breast cancer. Who to believe and why?

The problem with the "magic bullet" inclined public and the "single dietary component" studies is that they both lead us away from the incontrovertible evidence linking diet and nutrition from cross-cultural and international studies, evidence that points to the "Western" diet as implicated in virtually all of our "Western" chronic diseases, cancer included.

In the JAMA study, for instance, we are never told that all of the women studied (as in the Nurses' Health Study) were carnivorous, high animal-protein, eaters. Adding a few fruits and vegetables to a diet already high in animal protein and refined carbohydrates might not make a big difference in cancer recurrence. But what we're not told is what would happen if we adopted a whole foods, plant-based diet as is the case in places like rural China.

Let's give cancer patients and survivors more credit. If I were to tell you that instead of looking for a magic bullet, what you needed to do was remove something from your lifestyle and diet, isn't it true that you might not like the message, but you'd be willing to give it a try, no matter how impractical it might seem to some people? If I told you that western chronic diseases can mostly be prevented and sometimes even reversed by becoming more active and eating a whole foods, plant-based diet, would you consider changing your lifestyle? I would!

It's time for a change, not just in the way studies are done and reported in the media, but in our expectations for a magical cure. If we've spent an entire lifetime getting to where we are with dietary excess and extravagance, then getting off the routine is undoubtedly more important than adding a few fruits and vegetables to an already poor diet.

I can do this, and I strongly suspect that many others affected by cancer can do this.

An Unwanted Journey: Day 0669 - Malignant Misinformation

Yesterday, I had the good fortune to participate in a conference call with other colorectal cancer advocates across Canada. I have agreed to participate in the Colorectal Cancer Association of Canada's Advocacy Network, a group of people almost all of whom have been or currently are colorectal cancer patients or survivors. The president of the CCAC hosted the call, Barry Stein, himself a survivor and very capable advocate on behalf of colorectal cancer patients.

It was gratifying to hear the voices of people I have read about, those who are battling their own way through treatment and advocating for themselves and others with their provincial governments. The primary goals of the Advocacy Network are to ensure appropriate screening programs and timely access to care.

I was also pleased to hear that another of the advocacy goals included something the CCAC calls Healthy Lifestyles. I had mentioned my concern that scientific evidence is accumulating rapidly about the role of nutrition in preventing and treating cancer. The CCAC had already taken some steps to make healthy living a pillar of their advocacy efforts, something I heartily applaud.

During my period of diagnosis, followed by treatment with radiation, surgery, and chemotherapy, I did a substantial amount of research into colorectal cancer, treatment protocols, and self-help options. If you have followed my blog, you may have noticed a thread of frustration with what I am now calling malignant misinformation about nutrition and cancer.

At almost every point when I turned to experts for advice about nutrition, I felt frustration and disappointment. This isn't meant as a criticism of individuals. In fact, the registered dieticians in the supportive care program at the Grand River Regional Cancer Centre were uniformly helpful and available. The reason for my frustration and disappointment was systemic. The system by which information about nutrition and cancer is conveyed to the general public in our society is itself sick. The sickness is subtle and pervasive and continues to grow like a malignancy.

How do I know this? I've suspected a problem for quite a long time, but until recently I couldn't articulate what it was. But then I purchased The China Study, the most comprehensive study of nutrition every conducted. Much of the author's lifetime in nutrition and cancer research has revolved around epidemiological and clinical studies of protein consumption, the signal conclusion of which is that high animal protein diets promote cancer and many other degenerative diseases.

But, as Dr. Campbell asks in the book, "Why haven't I heard of this?" The answer is not that scientists are cooking their data and being paid under the table to promote those with vested interests in an animal-based diet. Again, as Dr. Campbell says, "The situation is much worse. The entire system - government, science, industry and media - promotes profits over health, technology over food and confusion over clarity."

If he is correct in his analysis, not only of the data but of the health information systems, then I suspect cancer care advocacy is subject to the same systemic pressures and constraints. If so, I hope to help fix the problem, at least in my small corner of the world.

An Unwanted Journey: Day 0667 - What I Need

This should be simple, right? Being a colorectal cancer survivor should mean that my needs are only slightly different than most people. After all, if there is no evidence of disease now, then the only differences of note between me and the "average" person will centre on what treatment has done to me.

Yes, but...what the "average" person needs is not as simple to determine as it might appear at first glance.

If you take evolution seriously (and I do), then what met the needs of homo sapiens for hundreds of thousands, perhaps even millions, of years has to be foundational for any meaningful discussion of what meets our needs today. Instead, what most of us hear is the latest pop health blurb on TV or radio or even a "Google Alert".

"Eat more fiber and you too can beat colorectal cancer." "Caffeine and vitamin D supplements will improve your odds in preventing cancer." "Add a little red wine to your diet." "Stop imbibing alcohol or you'll regret it!" "Take a colon cleanse now." "Yoga and meditation ease the stress implicated in cancer recurrence." "Just pray about it."

Blurbs - they're everywhere (even here). Not many of us have the time or the inclination to do the required research to sort out the blurb from the body of scientific evidence. But, perhaps all we need is to listen to what the body tells us. Granted, we'll have to listen closely, but surely it's within our grasp to just tune in to internal physical clues and signals and respond accordingly.

If you've been reading this blog since late November 2005, then you'll probably recognize the difficulty I've had in "tuning in". For what it's worth, my experience with cancer, treatment and recovery is teaching me a very difficult lesson; namely, it's not easy at all to figure out what to do to meet my own needs.

Why?

I'm deeply embedded in humanity's grandest and most ambivalent achievement. We in North America, born in the mid to late twentieth century, have unparalleled prosperity and technological resources at our disposal. And we have the "diseases of kings" to match our prosperity - cardiovascular disease, diabetes, obesity, drug addiction, and, of course, cancer.

There are so many good things that have resulted from this surge of science and technology, wealth and prosperity. But our losses are significant too. Perhaps the major loss is our recently acquired inability to determine what we need. We no longer know how much to eat, how much to sleep, how much to drink, or to some extent, how to get along with other people.

Our bodies are finely tuned instruments which have acquired natural capacities during the course of evolution for determining exactly the right amount of food required, exactly the right amount of sleep to get, how to cooperate with and respect other members of our species, and how to be happy. The only other species to have demonstrated the "diseases of kings" are those we have expressly put in laboratory experiments to see what we can do to disrupt their own evolutionary adaptive mechanisms. They too get fat, they ignore others, they become addicted, and they lose the ability to determine adequate amounts of sleep.

Overly protein- and calorie-rich foods and drinks, drugs, and alcohol have bypassed our own evolutionary adaptations. Light at all times of day and night have tricked us into a constant state of sleep deprivation. Instant gratification has fostered an unnatural selfishness and ignorance of the needs of others. So the current state of the "average" person is one with unparalleled wealth and apparently useless evolutionary adaptations to manage the side-effects of that wealth.

I am, like everyone else in the developed world, struggling to figure out what I need, what I truly need, struggling to find a balance lost and almost impossible to restore.

Still, I have hope that our science and technology and our will to survive will allow at least some of us to rediscover balance, to respect the wisdom of evolutionary adaptations in a "natural" environment, and to move beyond the "diseases of kings".

An Unwanted Journey: Day 0663 - Discharged! (again)

It's good news, even if I have heard it before. Today, my medical oncologist said that my recent CT scan and CEA blood test results were both normal. Last time after the official discharge, I got a call within a couple weeks indicating some concerns about ambiguous test results. Then I had another series of tests and follow ups at the regional cancer centre leading, after nine more months, to today's appointment.

I shook hands with my oncologist, received the discharge letter outlining how the follow up visits are scheduled with my family physician, paid for my parking, made a couple celebratory phone calls and sent off a few email messages, and now I'm ready to celebrate at a good vegetarian restaurant with my wife and son.

True, it's a little anticlimactic, but that's how it works anyway. This time, I feel slightly more secure since my overall health has improved significantly in the interim and each additional test has shown no evidence of disease.

As I wrote to some family members and friends, "today I am officially a survivor!"

An Unwanted Journey: Day 0655 - Subtraction

It's been a while since I last reflected on my unwanted journey in this blog. Since beginning my calorie-reduced diet on 20-August-2007, I've lost over 7 pounds and my BMI has been reduced by over a full point. Not spectacular, to be sure, but it's definitely in the right direction.

I've been feeling better too. For all my previous frustration in not discerning patterns of behavior that exacerbated the side-effects of medication and the after-effects of treatment, I am beginning to see correlations between how I feel and what I eat.

There's nothing very scientific about what I've discovered, but observations are a good start. For instance, beef seems to cause me digestive problems and to aggravate my bowels. So too does any large meal, especially those with high fat content.

Red wine may not be good for me either, but I'm willing to take the risk!

One of my friends gave me a memorable phrase which I now hear myself repeating occasionally during the day - "Hunger is my friend."

Seriously, though, it's very gratifying to finally find myself making discoveries that might improve my overall health and reduce the frequency of bowel movements. The lesson I'm learning is one of subtraction; specifically what can I remove from my diet or behavior to improve healing and recovery.

Surprisingly (or perhaps not), my recreational reading has reinforced this message of subtraction. I've recently read again two books which have complementary messages. The first is Daniel Gilbert's Stumbling on Happiness and the other is Douglas Lisle's and Alan Goldhamer's The Pleasure Trap, both of which explicitly deal with happiness as well as the problems of our psychological and biological makeup which contribute to counter-productive behavior.

It seems we are hard-wired to to expect that the solution to our problems is to add something, whether it is food, a pill, a lotion, whatever. We need to train ourselves to counteract instinctive urges to look for what's missing by thinking about what should be taken away. Given enough time, I hope to take this lesson of subtraction into other applications, but for now, the lesson is clear. Most of what afflicts me and so many others may well be resolved not by adding another medicine, but by subtracting dietary excess, animal protein, sodium, sugar, and refined carbohydrates. Reducing my BMI may be the single most effective treatment I can offer myself as I move forward in recovery.

An Unwanted Journey: Day 0646 - The Need for Advocacy Groups

I envy the work of the Lance Armstrong Foundation in the United States, especially the work the LAF does in lobbying federal politicians about the fight against cancer and the needs of cancer survivors (see the LIVESTRONG Presidential Cancer Forum as one example of the lobbying efforts).

Advocacy by the LAF is all about saving lives. And it's about visibility and holding politicians accountable for both policies and practice.

We have advocacy groups in Canada as well, just nothing as publicly visible as the LAF. We have, for instance, the Cancer Advocacy Coalition whose work is mainly about publishing assessments of the cancer system in Canada. Maybe it's just me, but as a cancer survivor I think we need something more like the LAF here, with rallies, political forums and other advocacy events; and the organization should be controlled by cancer patients and survivors first and foremost, not practitioners in the health system, nor necessarily funded by pharmaceutical and other medical for-profit companies (see the list of sponsors/partners for the Cancer Advocacy Coalition). True patient and survival advocacy also cannot be handed over to government funded agencies like Cancer Care Ontario.

Advocacy is about "getting the face" of those with power and influence, not those beholden to people holding the purse strings. It's about public image and branding. Here's one example.

Over 65 million of us now sport the yellow LIVESTRONG arm bands worldwide. I can't say how many of us in Canada wear the arm bands, but if you walk into our home, you'll see at least a couple of us wearing the arm band 24 hours a day and the rest wearing them occasionally. In fact, we even have a supply of the arm bands available should one snap from over use.

The arm bands are a generic and highly visible statement of advocacy and the personal impact of cancer on our lives. The Colorectal Cancer Association of Canada has a lapel pin that does something similar for those of us affected by colorectal cancer. But we still need a patient/survivor-driven advocacy organization in Canada similar to the LAF in the United States.

The LAF has no plans to establish a Canadian organizational equivalent, but who knows, if enough of us lobby the LAF, we just might be able to change their minds.

Imagine that we had an LAF Canada advocacy group ready and waiting for this year's Ontario provincial election campaign. One thing we could do is petition each and every candidate about the appalling lack of PET scans in the province (see the excellent article in the Ottawa Citizen - 'Draconian' policy stymies cancer patient by Joanne Laucius). This kind of advocacy doesn't just happen without patient pressure, without getting the attention of policy makers by making it an election issue.

It high time we had our own LAF Canada.

A Video Tribute to Randy Spencer

On 4-Sep-2007, it will be the fifth anniversary of the death of my brother, Randy Spencer. He died far too young at age forty-five.

Randy was a self-made man, a loving husband, and a very proud father of two children. He continually surprised members of his extended family with his penchant for learning new things, setting goals, and then working until he had mastered the skills required.

One of the areas he excelled in was web development, especially the graphics required to set sites apart from the run of the mill. I would dearly have loved to have seen what he might have done during these past five years if he were still with us. Instead, we have some of his digital work which reminds us of his aptitude, his strength of character, and what might have been.

This video is a tribute to Randy with the graphics courtesy of his daughter.

An Unwanted Journey: Day 0644: The Video

Another vanity video, this time a compilation of photographs and blog post images documenting my battle with colorectal cancer from April, 2005 to August, 2007.

This takes a lot of work, gathering images, figuring out exposure length for each shot, synchronizing music with video, adding titles and credits, editing and testing, followed by uploading and further processing. But there's nothing to tell a story quite like a video, even if all the images are still shots.

A Weekend on Taylor Island

Admittedly, this is an experiment with posting video to my personal blog. If anyone in my family objects, I'll be taking it down right away.

Our annual outing to Taylor Island is a highlight of the year for me. Not only is it an opportunity to relax in one of nature's most beautiful spots, it's even more a chance to visit with my own nuclear family members and our hosts. They are all truly wonderful people and I can't imagine my life without them!

Apples, the Universe and All That

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Originally uploaded by rtfax

Yes, there is an airplane in the sky overhead, but wouldn't it be preferable to imagine that I am contemplating the nature of the universe, apple in hand. After all, it's a Gravenstein, the first of its variety for 2007. I'm surrounded by apple trees, with my wife and youngest son and I ponder...

Each year we make at least one trek, sometimes several, to an orchard a few miles south of Cambridge to harvest apples. This year is the earliest we have been to the orchard, picking Gravenstein and Paula Red. In a week or two, we'll be back for the next variety's ready for the pickin'.

They say an apple a day keeps the doctor away. I'm counting on it!

Kayaking early in the morning

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Originally uploaded by rtfax

Lake Muskoka early in the morning offers beauty, solitude, and opportunities for amateurs like me to paddle in the kayak without competition from motor boats and Sea-Doos. This small island is only one of literally thousands, some of which no doubt inspired the Group of 7.

The lake can become treacherous later on, but at this time of day, you might think it was something of your own creation. Moments like this are all I need to remind me of the beauty of nature during the rest of the year toiling away in an office.

Lake Muskoka, early morning

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Originally uploaded by rtfax

I love the early mornings on the lake. The water reflects both the sky and the shoreline. The loons call in the distance. I'm alone with nature, my thoughts, my camera, and an opportunity for silence and rejuvenation. It's magical.

An Unwanted Journey: Day 0634 - Body Mass Index

My family and I had a great long weekend in the Muskokas with family. But even there, I was constantly reminded of the after effects of colorectal cancer treatment. Coming home, I decided that it was time to take action to mitigate those annoying side effects.

I've decided to lose weight; more precisely to reduce my body mass index. I'll do this gradually by a simple technique that always seems to work for me when I am disciplined enough to do it - counting calories. This time, however, I have the benefit of using a Pocket PC with the necessary software constantly with me (My Personal Diet from VidaOne Inc). The software has a decent database that tracks health measures like body weight and body fat percentage, blood pressure, feelings, etc. It also has a place to record workouts and meals without having to write down everything and then later remember to do calorie, carbohydrate, protein, fat and other nutritional lookups later. This makes the likelihood of maintaining the regimen greater - convenience should never be underestimated in designing a routine.

I haven't done this before in my recovery period mainly for two reasons: 1) I didn't want to impose another set of restrictions on myself immediately following all the restrictions of my treatment period; 2) the research doesn't show any correlation between rectal cancer and BMI, although there does seem to be a clear correlation between colon cancer and BMI. Finally, more recently, the evidence that a prudent diet can cut one's risk for recurrence of generic colorectal cancer seems to mandate at least a diet of whole grains, fruits, vegetables, fish and chicken.

But now, no matter how equivocal the research may be, I want to reduce symptoms like the frequency of bowel movements and to simply feel more flexible, energetic, and lighter. By reducing my BMI over about 45 weeks, even if I don't reduce risk for recurrence, I'll feel better and I hope to have a better quality of life. Not to mention that I should look better in jeans!

Anyway, that's the plan. It will take a while to report on progress, as it will with my new yoga regimen.

An Unwanted Journey: Day 0627 - Prudence

A recent study has reported that a prudent diet can decrease substantially the chance of local recurrence of colorectal cancer. Researchers at Dana-Farber Cancer Institute in Boston and Harvard Medical School have demonstrated that a prudent diet of fruits and vegetables, whole grains, poultry and fish and which avoids red meat, refined grains, sweets, desserts and French fries is the way to go. Those who chose a more typical Western diet, when tracked over 5 years, had a recurrence rate 3 times higher than those enjoying a prudent diet.

An Unwanted Journey: Day 0627 - The Embarrassing Stuff

I've avoided some tough questions in my blog about rectal cancer. Hard to believe, you might say, if you've been with me since November 25th, 2005. After all, I've written about medical technology, about treatment, about emotional highs and lows, about research, about happiness and irritation, about medical mistakes, about organizations and other individuals, about books and articles, about diet and nutrition and exercise. True, but for some other things - some of the truly tough and often embarrassing things - I may only have made allusions or offered hints of troubles.

I guess that's natural enough. One always risks "over sharing" when talking about personal medical experiences. But then again, some of those who comment on my blog or email me or call me on the phone, do so because of my apparent honesty and forthrightness in describing my experiences. The casual visitor, some extended family members, friends, and acquaintances who come here are admittedly not particularly interested in some of the details of my experience. And rightly so. This is not easy stuff to write about and it's certainly not easy stuff to read.

If you're a casual visitor, then perhaps this post is not for you. If you've recently been diagnosed with rectal cancer and are considering your options for treatment, then stick with me.

Surgically, you have to think in terms of trade-offs. You can have a colostomy with a permanent stoma and a bag at your side for the rest of your life (an abdominoperineal resection, APR), or you can elect (some might say, if you're lucky) to have what is called a low anterior resection (LAR), an operation which is intended to preserve as much natural function as possible. What natural function? Sexual function, urinary function, and bowel function. I opted for the LAR and had the surgery performed on March 28th, 2006.

The whole point surgically of the LAR - apart from getting the tumor and mesorectum removed with a clear margin - is to save natural function. Not much of a choice, right? Maybe.

When I made my surgical treatment decision, the overwhelming motivation was simply survival, whatever the outcomes. Assuming survival, then my assumption was that an attempt to preserve natural function was better than a colostomy. Unfortunately, I cannot say that I thought much about functional impairments. It's embarrassing to talk about these things, but for anyone considering surgical treatment options, my advice is to try to think carefully about the implications. In fact, recent research has shown that patients have different approaches to the tradeoffs involved.

Sexual Function

My experience since surgery is simple. Sexual function is impaired. Decreased sexual interest, dry orgasms, and difficulty achieving orgasm are par for the course these days. There...I've said it. Now, I have to deal with it.

Urinary Function

The LAR (low anterior resection) is meant to preserve urinary function, although there is always the risk of impairment simply because of the proximity of nerves and muscles controlling sexual, urinary, and bowel function. My experience was not too bad. There was initial loss of urinary function, followed by painful bladder spasms, and then, after release from hospital, an extended period of self-catheterization and gradual recovery of function. Today, it's safe to say that not all function has returned fully, but a couple nightly trips to the washroom strictly to relieve my bladder isn't too high a price.

Bowel Function

Here's my biggest disappointment and frustration, even more than my concern about sexual function. Two words - fecal incontinence. Research has shown that a stoma affects quality of life only slightly. High anterior resections don't seem to affect quality of life at all. But, and here's the kicker, low anterior resections can vary dramatically in the effects on quality of life following surgery.

I don't know if my experience is typical or atypical. Instances of fecal incontinence have been relatively rare, but when it happens, it's awful. In fact, fear of fecal incontinence is so high for me that I am limiting some social contact, I am definitely limiting some forms of outdoor exercise, and am always "on the alert" about how close the nearest washroom is.

It's not just about embarrassment (although that is a huge concern for me); it's also about discomfort and lack of routine. I haven't figured out a diet yet that makes bowel movements and regularity more predictable. So the outcome is that I'm always on edge, often in relatively significant discomfort, and unhappy about the quality of my life.

Given the relatively low impact on quality of life with a colostomy, I sometimes wonder whether I should have chosen that route. Don't get me wrong, I'm really glad to be here and I'm very pleased with my medical care. I'm just not too pleased with quality of life issues these days.

An Unwanted Journey: Day 0623 - Cancer and Yoga

Physical exercise is therapeutic. I guess there really isn't much doubt about the benefits of exercise for cancer patients and cancer survivors in general. The trick is in finding what works for the individual.

I remember as I read about Lance Armstrong's battle with testicular cancer being amazed at his tenacity and fierceness in being as active as possible during his treatment. Reading about what worked for him inspired me to try to be as physically fit as possible before my surgery near the end of March 2006. Unfortunately, the desire to be active didn't match what was possible as I embarked on my neoadjuvant combination chemoradiotherapy in January of 2006. The burning and pain, especially in the rectum and anus, made it almost impossible to continue with the training program I had started in December 2005 to get ready for my surgery.

Then, after surgery and the hospitalization for post-surgical complications, I started adjuvant chemotherapy and had difficulty sitting down much less embark on an exercise program. Still, I kept paying my monthly gym membership dues hoping that gradually I would feel good enough to start back up with resistance training and some aerobic conditioning.

But nothing worked. Even walking became difficult. It was a vicious cycle - not feeling well enough to exercise and then feeling worse because I didn't exercise. Then, the guilt on top of it all, realizing that despite my aches and pains, more physical activity would certainly help but not having the willpower to actually do it.

Finally, I canceled my membership at the gym. If I could barely make it to the washroom some days while at work; if I wasn't getting enough sleep anyway, why would I get up early to go to the gym and become frustrated with what I couldn't do; if I couldn't even bend down to pick up heavy objects without fear of further pain or even fecal incontinence from the pressure; what was the point in gym membership?

But I still had to do something. I had to find something that worked for me. So, I dusted off the DVD instructional videos for Total Yoga and the Yoga series, only once again to meet with further frustration. Not only was I incredibly stiff and inflexible, but the sun salutations in the flow series were almost as difficult as anything else I had tried to accomplish. I was, simply put, too out of shape to do even the foundation series.

So, I went back to the very basic beginners approach, using a DVD instructional video from Yoga Journal with the renowned Iyengar teacher, Patricia Walden. Her Yoga for Beginners is gentle enough that I have been successful in doing daily workouts. The video, plus a new yoga mat and yoga bricks from Gaiam, as well as the recently published Yoga as Medicine, and it appears that I'm set with an exercise routine that I can actually do without constant failure.

The chapter on cancer is based primarily on Jnani Chapman's work with a breast cancer patient, Erin Brand, in the San Francisco area. Her approach is extremely gentle and incorporates special breathing exercises, relatively simply poses, and meditation with guided imagery. The asanas illustrated in the chapter are meant only to be indicative of the general approach she takes with her patients. The book is authored by Timothy McCall, both an M.D. and the medical editor of Yoga Journal. As McCall writes, "Yoga is strong medicine but slow medicine." (p.45)

If he's right, and if one week of daily practice means anything, then this slow, gentle approach will certainly yield results, but those results may take quite a while.

An Unwanted Journey: Day 0616 - HRT, Chemo, and Survival

There are few days that pass without news of research promising hope for colorectal cancer patients. Yesterday witnessed two announcements worth noting.

DO THE CHEMO!

The first might be considered obvious. Adjuvant chemotherapy for Stage II colorectal cancer patients improves survival rates; in other words, if you've been diagnosed with Stage II colorectal cancer and presumably already been treated surgically, the risk of local disease recurrence is lessened by post-surgical chemotherapy, probably following a typical regime of FOLFOX or FOLFIRI.

What is surprising, at least from my own experience with Stage III rectal cancer, is that 5-fluorouracil-based adjuvant chemotherapy isn't standard practice following surgery for Stage II colorectal cancer. An Australian 10-year study between 1993 and 2003 demonstrated a definite survival benefit of adjuvant chemotherapy.

My own experiences with adjuvant chemotherapy were not pleasant, although I was able to continue working some of the time during treatment. Towards the end of my cycle, my sick days grew in number significantly, making performance of my job responsibilities increasingly difficult.

But studies like this are comforting. Despite the treatment-induced illness, it's good to know that adjuvant chemotherapy has solid statistical evidence to warrant the side effects even if one has no evidence of disease following surgery.

HORMONES ARE KEY

The second interesting piece of news is even more suggestive of changing perspectives on the nature of colorectal cancer. Work by researchers at the Kimmel Cancer Center at Jefferson in Philadelphia suggests that colorectal cancer is not so much a genetic disease as an endocrine disease with a hormone solution.

The research indicates that the growth of intestinal tumors is regulated both by size and number by GCC, guanylyl cyclase C, a protein receptor on the epithelial cells of the gastorintestinal tract. Almost all colorectal cancer patients are afflicted by both carcinogenic agents and mutations in the APC gene regulated by the GCC protein.

I know, your eyes are now glazing over. But the point and the promise of this research is that hormone replacement therapy (specifically guanylin and uroguanylin) looks like it can be applied to both prevent and treat colorectal cancer.

IT'S YOUR LIFE

As they say at the Lance Armstrong Foundation, knowledge is power. I'm not saying that you have to read every research article published today. I'm not saying that you need to become an expert on leading-edge hormone replacement therapies. But if, like me, there are days when survival seems harder than it should be, remember the LAF Manifesto, become more knowledgeable, and inspire yourself. Here's a start - watch this video, an excellent counterpoint to the video referenced in my previous blog Never the Same.

An Unwanted Journey: Day 0616 - Never the same

It brought me to tears, tears of empathy, tears of recognition, tears of sorrow and grief. I just watched a video entitled, "From Cancer Patient to Cancer Survivor: Lost in Transition" available on Google video here.

I've read stories from other survivors, and they are helpful (see, for instance, the collection of stories from the Lance Armstrong Foundation). I've browsed e-group discussion threads where people with similar side-effects and after-effects talk about their symptoms and problems. I've mentioned my continuing problems with oncologists and family physicians. But, unless you've been there, you'll never realize how depressed you can become, how utterly alone and lonely you feel at times, how changed you are. But in the video, you hear and see people talking like this:

"Once you've had cancer, you have cancer for a lifetime. So you learn to deal with it every day."

"I don't have the luxury of having an ache like everyone else."

"It's a long, long grief...you're not going back to your old life."

"Cancer survivors often have symptoms that go on for years...cancer is a chronic disease where the treatment may be over but the problems persist."

"I remember the day of my last treatment...I was so overtaken by grief...I felt like a warrior without a war...what about my feelings...what about my life?"

"...my sexuality has become an issue...I quite frankly wish we didn't have this problem, but we do."

"My neuropathy from the chemo, my colitis from the radiation...it goes on."

"The person who has experience a serious illness like cancer...has very special needs."

A survivorship care plan is one of the recommendations proposed in the report. Most of the information contained in the sample plan is comprised of medical details, all of which is helpful and absolutely necessary to feeling somewhat in control.

But the psycho-social and financial aspects of survivorship plans strike me as inadequate at best. Loss of work and income, loss of purpose, loss of social contact, loss of opportunities - it's truly tough. Yes, you can transform your life, and that is definitely the direction in which one's efforts and focus must be directed, but there's nothing easy. You'll never be the same.