An Unwanted Journey: Day 0732 - Phospho-Soda

It's enough to scare anyone anticipating an endoscopy procedure. Fleet Phospho-Soda - generically known as sodium phosphate oral solution - is the typical purgative prescribed for anyone getting ready for a sigmoidoscopy or a colonoscopy. I've had an assortment of them over two years now; tomorrow will be number five. Phospho-soda is foul tasting to be sure - in fact so foul, that my doctor usually recommends a Gravol tablet 30 minutes before drinking the solution.

Anyone who's been there knows what I'm talking about. Nasty.

But then there's the medical warning about electrolyte imbalance from Health Canada. Hypocalcemia, hyperphosphatemia, hypernatremia, hypokalemia, and acidosis - just a few of the conditions which you might experience if you ingest more than 45ml of the solution during a twenty-four hour period.

I'll be taking exactly 90ml in two separate intakes. I know what to expect.

Funny, though. After all these experiences, I've come to realize that timing is critical and that the worst of the entire procedure is the preparation. I've never had any of the adverse reactions mentioned by Health Canada, but I have had a really bad experience in which the timing of intake left me totally exhausted and hardly able to walk. Now I know better.

So, here I go - the first 45ml coming up...

An Unwanted Journey: Day 0730 - Two Years Ago Today, and Now

The past two years have been...interesting. Two years ago today was a Friday, an unanticipated day off work, and the first full day of knowing that I had colorectal cancer.

Since then, so much has happened that it is sometimes difficult even to get a handle on it. The medical story itself has left indelible imprints on me and my family. To say I will never be the same sounds trite and obvious.

But the best part of it all is that I am still here, writing these words, and reflecting on that unwanted journey. I am, as they say, a survivor.

I've made it through colonoscopies, sigmoidoscopies, MRIs, CT scans, chest and pelvic X-rays, biopsies, cancer board reviews, radiation, surgery, post-surgical complications and hospitalization, blood transfusions, worries about C-difficile, pulmonary embolii, implant of an inferior vena cava filter, chemotherapy, concern about possible recurrence, discharge from the regional cancer centre - twice - to today...four days away from another follow-up colonoscopy with my surgical oncologist at Grand River Hospital.

But I'm here, with my wife and sons, still watching the Raptors win some basketball games, getting ready for the Grey Cup game, putting together a PowerPoint presentation for our WWITPRO user group for tomorrow evening on mind mapping techniques for managing IT projects, searching for a new job because I can work and am very good at what I do, and feeling optimistic about the future.

I've started working on the new generation of Microsoft certifications, beginning with SQL Server 2005, begun working with the Colorectal Cancer Association of Canada's advocacy network, providing some leadership with other IT influencers for Microsoft Canada for the IT professional community - in other words, I'm right back in the swing of things.

There are things that I would wish turned out differently, some physical constraints that frustrate me at times, and times when I just can't figure out what my body is doing. I regularly have disruptive nights and my sleep patterns are all over the map. But, like I said before, I'm here, making decisions about diet, exercise, and the future just about like everyone else.

One thing has become very clear, apart from my gratitude for regaining my health. Scratch the surface of just about anyone else, and you'll find similar worries, exposure to cancer or other serious illnesses, and a kaleidoscope pattern of good and bad. I am definitely not alone in this journey. It's just a little different.

To that extent, the past two years have taught me some humbling lessons. This journey has reinforced reflection on the things that matter most and the connections between all of us, whether they be health, illness, loss, hope, fear, love, joy, frustration, gratitude or acceptance.

So while I hope the next 730 days are less "eventful", I hope the lessons of life continue unabated. I hope the "unwanted" nature of my journey gradually dissipates into simply a journey.

Second Monday, Fourth Friday - Thanksgiving

One of my brothers and I have been carrying on a Q&A about seasonal trivia. If he happens to read today's blog entry, then he'll find the answer to the question "What does the novel - The Princes of Ireland - have to do with Christmas?" right here - Newgrange is the answer.

Instead of participating in the controversy about appropriate seasonal greetings like "Merry Christmas" or the more inclusive "Happy Holidays", I prefer to do a little reading and research about the history of our cultural celebrations. Newgrange is a perfect example of how the winter solstice has been the focal point of seasonal celebrations for thousands of years.

Imagine yourself one of the lucky lottery winners in Ireland who gets to be present in this prehistoric site on the longest night of the year when the light of dawn breaks through and illuminates the floor and the long passageway of this structure. The site was built just for this time of year (the winter solstice) and demonstrates how incredibly important our celebrations have been and remain as we approach winter.

On a day like today in southwestern Ontario, when we've had a full night of freezing rain followed by a day of gently falling snow, the idea of celebrating the return of the sun at precisely the time when the prospect of a long winter faces us is entirely welcome.

Thanksgiving is another of those annual celebrations that often gets mired in sappy sentimentality and commercial hyperbole. In Canada, we celebrate it on the second Monday of October. In the United States, it is celebrated on the fourth Thursday of November. Making it official might help families and retailers prepare, but the historical point remains very similar to that of winter solstice (Christmas) celebrations. There is something in our very nature which demands social gratitude and appreciation.

In Canada, we often point to Martin Frobisher, an English explorer who, in 1578, gave thanks to God in the company of his crew for a safe journey. That would, by the way, make the Canadian thanksgiving older than the American. But First Nations people certainly celebrated the harvest long before Christians arrived in Newfoundland and Labrador. In their celebrations, the "Three Sisters" of squash, maize (corn), and beans were a focal point for celebrations.

Whatever and whenever we participate in these seasonal celebrations (take a look at the Jewish connection to American Thanksgiving as well), I think we are enriched by a modest knowledge of history. Then the current controversies appear silly and inconsequential in comparison to the universal human need for companionship, gratitude, and hope.

An Unwanted Journey: Day 0726 - Marginal Highlights

If you've followed this unwanted journey thread for the past two years, you'll know that there is very little I consider off limits. Whether it's radiation proctitis, chemotherapy blues, post-surgical complications, enduring neuropathy, or even the clinical value of optimism - I've reflected on them all.

More recently, I've avoided writing about some of the material arriving in my Inbox from Google Alerts - typical stuff related to diet and cancer, vitamin D, grape extract, coffee, etc. Frankly, it gets a little tedious and predictable.

But in a week, I'll be having another colonoscopy, almost two years to the day from my diagnosis. I'm not really nervous, but it's on my mind. Today, something arrived in my Inbox about prognostication for those who have undergone anterior resection surgery for advanced rectal carcinoma; in other words, something specifically about me.

Researchers looking at 201 cases with locally advanced rectal cancer analyzed the circumferential margin involvement (CRM) in the excised tumors of the patients. This is a technical measure which looks at whether any malignancy is found in the margin of the tumor.

What most rectal carcinoma survivors fear is local recurrence, meaning another instance of rectal carcinoma in roughly the same region as where it was originally found. Local recurrence is very bad news.

CRM is the acronym for circumferential margin. If the CRM showed no evidence of malignancy, then only 8% suffered local recurrence, whereas 43% of those with CRM involvement had a local recurrence.

It gets even a little more detailed. Those of us who have had anterior resection surgery either had radiation therapy before surgery or combination radiation and chemotherapy. In both cases, the surgical oncologists are hoping for a regression of the tumor before surgery. This makes it easier to do the surgery as well as to get a good CRM for the pathologist who will examine the tumor.

This study indicates that the amount of tumor regression doesn't seem to correlate with prognostic factors. In other words, regression alone doesn't seem to matter much as far as your survival is concerned. But having a free CRM does matter a great deal.

As I get closer to my follow up colonoscopy, the worst possible news would be evidence of local recurrence. What I anticipate is a completely benign result. My surgeon always gives me bad news quickly and directly, so as long as I don't hear from him until my scheduled follow consultation a couple weeks later, I'll be a happy man.

An Unwanted Journey: Day 0723 - The "secret" is out

I picked up the Globe & Mail's Books section yesterday and saw malignancies sprawled across mid-page. A quick glance indicated that Andrew Nikoforuk was reviewing The Secret History of the War on Cancer by Devra Davis, a book just released in October.

Normally, this would be, at the very least, an occasion for heightened interest and gratitude that mainline news organizations were focusing on the battle against cancer. But that first surge of enthusiasm was quickly tempered with a growing unease and sense of frustration.

Maybe it was just a bad day for Nikoforuk and the editors of the Globe & Mail. But the tone of muckraking and exaggeration, and the flow of non sequiturs exacerbated the frustration:

• "the cancer establishment has retreated from the truth faster than Canada's commitment to a greener country."



• "Devra Davis, one of North America's sharpest epidemiologists (her previous book When Smoke Ran Like Water, was a finalist for the National Book Award).



• industry and its propaganda hit men



• easily the most important science book of the year

And then, to my utter amazement, I learned of the "death" of one of my favorite comics - Andrea Martin:

• She too [Davis] has smelled and felt cancer first-hand, having lost two parents and many friends, including the comic Andrea Martin to the disease.

Without having the book in my hands, I don't know whether the mistake is Nikoforuk's or Davis's, but a simple Google search clarifies that the comic Andrea Martin (born in 1947) is alive and well and that The Breast Cancer Fund founder, Andrea Ravinett Martin (born 1946), died of brain cancer in 2003. The latter did comment on Tom Batiuk's comic, Funky Winkerbean, for his series on breast cancer. But it's still hard to believe the Globe & Mail let that one slip, especially given the Canadian comedienne Andrea Martin's credentials.

I'm not a fan of industry's record in preventing cancer, nor even of the Canadian government's record in promoting the export of asbestos. But I do appreciate clarity, caution, and case-building, all of which are missing in this week's centerpiece book review.

I will certainly buy and read Davis's book - even if only to ponder why she reminds me so much of Mary Tyler Moore. But I will be doing so in the context of what I still think is the single best book on cancer prevention out there - T. Colin Campbell's The China Study. Why? Because despite the clear connection between industrial chemical pollutants and carcinogenesis, it is still diet which is the single most significant factor in whether carcinogens become problematic or remain dormant.

It may be a fine line, but I prefer Campbell's approach to that of Davis. Campbell doesn't think there is a massive conspiracy afoot, just a systemic, and far more dangerous, problem in which assumptions are made without critical reflection, information is promoted without caution, and careers are built on obfuscation instead of clarity.

Starbucks, Vincenzo's, and my life partner

My niece got me thinking. We're both sentimental types, so when she blogged about getting the Christmas bug a little early this year, I thought, "Yeah, that's a little too early for me." But then this morning, as my wife and I prepared for our Saturday morning errands and glanced outside at the dusting of snow on the bushes, I started to catch the same bug.

We began with a trip to Canadian Tire for a new kettle, thinking warm thoughts, then on to Starbucks for even warmer thoughts. While there, we purchased a Starbucks Entertainment compilation called Stockings By the Fire. Then, sliding the new CD into place, and sipping our café latté and bold Yukon, we started listening to what will almost certainly become one of our favorite seasonal albums and heading off to our very favorite specialty grocery/deli store in the entire Waterloo Region - Vincenzo's.

Steadily, over the last few weeks, we're spending less money at our regular grocery store and more at the specialty grocer. If you take a peek at my profile photograph, you'll see I betray no evidence of an Italian heritage, but I'll never forget the time, about twenty years ago, when my parents joined my wife and me at the old location for Vincenzo's and Vincenzo himself spoke to my father implying that they both shared an Italian background. My Dad was amused. All these many years later, though, we still go to Vincenzo's to buy garlic-stuffed olives, falafel, salsa, fresh bread, deli salads, expensive chocolate, and tasty treats of all kinds.

Saturday mornings with my life partner are just about us - no children, no pressing demands, no urgency - just us, a few things we want to do together, and time to be in the moment, entertaining sunshine, rain, snow, clouds, traffic, falling leaves, whatever happens to be going on around us. Just us. It's a time and a season when I already know the answer to the question Rufus Wainwright asks, "What are you doing New Year's Eve?"

Maybe that day will involve Starbucks, maybe even Canadian Tire, even more likely it will mean a trip to Vincenzo's. But one thing is absolutely certain; it will be the two of us, and that's a very good thing.

An Unwanted Journey: Day 0721 - "A small price to pay for walking around"

Friends sent me an excerpt of his final lecture at Carnegie Mellon University on my Facebook FunWall from a YouTube video. Then I saw a brief mention of his "life lessons" on the IT Manager Connection blog. As I quickly glanced through Stephen Ibaraki's blog entry, my interest was piqued by Alice, the software whose objective is to teach high school and college students how to write video games but whose "head fake" is to actually teach them object-oriented programming.

I am talking about Randy Pausch, a computer science professor who was diagnosed with pancreatic cancer in September 2006.

As I mentioned in a comment on Stephen's post, the excerpted YouTube video doesn't even come close to the impact of the entire lecture (and which can be found in full here: http://www.cmu.edu/homepage/multimedia/randy-pausch-lecture.shtml ).

Randy and I are both IT geeks. We both love aspects of academia. we both have a loving wife and children who mean the world to us. And, of course, we have both been touched by cancer.

But there most of the similarities end. I have no evidence of disease, but Randy is struggling through palliative chemotherapy, the best outcome being a few more months of purchased time, something Randy called "a small price to pay for walking around."

Marc's Belgians

IMG_0062
Originally uploaded by rtfax

We've been talking about doing this for many months. But it never seemed to work out. Busy schedules, other priorities, forgetting that times to just stop and smell the manure can be important too!



So it was fun to take one of the only sunny mornings of one of the bleakest months of the year to visit two farms and three Belgian mares owned by my friend. Marc has been raising, harnessing, and showing large breed horses for about twenty years now. Sweet Sherry, Barb, and Classy Babe are all related. Three generations with only nine years between the eldest and the youngest. Beautiful, big, Belgians.



Most of the fun, of course, was simply telling each other stories. Mine were meager, given the context of horses and farms. In fact, the last time I spent any appreciable time on a farm was when I was sixteen and working as a carpenters helper with a Dutch couple and living with them on their hobby farm for the summer. We did haying, fixing up the barn foundation, taking the pig in to the abattoir - all the typical hobby farm duties which a kid from the city found totally bizarre.



Marc had spent time as a youngster at his uncle and aunt's farm helping with chores and becoming enamored with the horses they used to pull wagons and some farm machinery. Then, after moving to this region in the late 70s, Marc was exposed to the Mennonite community, to large breed horses used for sleigh and wagon rides, and given an opportunity to learn about handling and training horses. It became a passion for him and one which he now gladly shares with his friends.



It wouldn't be my choice for a hobby. There's simply too much work involved. The horses demand constant attention and care. Veterinary bills can be unexpected and expensive. And then there are harnesses, wagons, feed, medicine, manure, hay, oats, carrots, and so on.



Still, the animals are simply beautiful, once you acknowledge the respect they deserve - 2,000 pounds or so of raw power and strength.



We fed the horses, talked to them, brushed them, took them out into the field, took some hay out to the field for them, gave them carrots from outside the fences, took lots of photographs, visited the veterinary clinic, talked to the host farm owners, chatted about the various ailments afflicting the horses, how to pull "wolf" teeth while the horse was under anesthetic, how friendships are formed among "horse friends", and even made plans for a wagon ride when I might get a chance to drive the team.



Thanks, Marc. This morning was a reminder of how we are still fascinated by horses and how the world be a poorer place without them.

An Unwanted Journey: Day 0717 - Remembering Suzanne Aucoin

Suzanne died early yesterday morning on Remembrance Day. I never met Suzanne in person, but I did hear from her in email and heard her contributions to the Colorectal Cancer Association of Canada's advocacy network. I've also seen her interviewed on television. Her picture currently stands immediately above my own on the CCAC's web page listing inspirational stories.

Suzanne had a web site that was both inspiring and unnerving. Inspiring because she was a cancer activist, doing whatever she could to ensure cancer patients received appropriate and timely care; unnerving because she was so young and had already once "been cured" of Stage 1 colorectal cancer. Unnerving also because she worked diligently to become as healthy and physically fit as possible between the end of her first treatment to the time of her second diagnosis with Stage IV cancer in 2003, exactly two years before my own diagnosis of Stage III rectal cancer.

Colorectal cancer is a plague on society, something which I would never wish on my worst enemies. People like Suzanne (and others like Leroy Sievers who continues to fight valiantly and support others touched by colorectal cancer) teach us about the importance of living life fully, committing ourselves to helping others as much as we help ourselves, and advocating on the behalf of those who lives have been irrevocably touched by this plague.

Suzanne will be missed by many people, not the least of whom will be other survivors like me. We will continue to advocate on behalf of colorectal cancer patients, thinking of Suzanne and acknowledging her spirit and example in our own efforts. Today, in addition to remembering the veterans of wars, I will remember Suzanne and her battle in another war, a war often filled with silent victims. Suzanne was a vocal advocate. We will carry on her battle.

I will never forget

My personal connection with veterans of the wars in which Canadians participated is somewhat indirect. The closest relative was my step grandfather, Grandpa Charlie, who didn't talk to me directly about his experiences in the First World War, but whose lifelong struggle with emphysema testified dramatically to the lingering physical effects of his time in the trenches. He would also sing songs from the war and recite poems to me. The only thing he wouldn't do is talk about his comrades and what is was like to fight. I'll remember his songs and poems.

My family and friends have heard my stories about Remembrance Day in Europe when I visited the Canadian war cemetery in the Netherlands with other members of our high school concert band. Walking among the gravestones that day, before we recorded our memorial tribute for later airing in Canada, I read the ages of those young men who died - 18, 22, 19, 25, 21 - just a couple years older than I was at the time. That image, that memory, will remain with me forever.

Much later, as I studied history at the University of Waterloo, I went to Archives Canada in Ottawa to research shell shock in the first world war. I read first-hand accounts and medical reports, studied "expert" opinion about the psychology of war fatigue, and mapped out the services provided to those who returned from the front but unable to move beyond their own experiences. I'll always remember the personal impact of that research.

Today, I am watching the Remembrance Day memorial celebrations in Ottawa on CBC News World with my wife and so many other Canadians. And although I have grave misgivings about our role in Afghanistan, I will remember the sacrifices of the men and women who serve both our country and our values. It's the least I can do.