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.