Sunday, July 27, 2008

An Unwanted Journey: Day 0975 - Thank you, Randy Pausch

I've mentioned Randy Pausch at various times in this An Unwanted Journey thread (14-Jun-2008; 16-Nov-2007). Randy died Friday from complications of pancreatic cancer at age 47.

Perhaps it goes without saying that Randy Pausch made a difference for me personally. I've watched his lecture Really Achieving Your Childhood Dreams (on DVD from Carnegie Mellon University) and I've read his book The Last Lecture. And I'm absolutely certain I'll be watching the DVD and reading the book again. Both are within easy reach as I write this blog entry. Almost daily, I would also visit his web site to read his updates, comparing notes, so to speak, about cancer and our respective battles.

One of the benefits of the Internet is the sense of virtual community and connection. True, it's not the same as an actual relationship with someone else, but it can provide a sense of catharsis and identification.

With Randy Pausch, there was a shared passion for information technology and the entertainment industry. With Leroy Sievers, there is a shared love of the written word as well as the shared experience of metastatic colorectal cancer. But, true be told, I am almost ashamed to admit that I also turned to these two men because their prognosis was worse than my own. Doing so put my own plight into perspective.

Almost ashamed, but not quite.

We all need reality checks and comparisons with people both better off and worse off than ourselves. We need perspective. We need other voices reminding us of what is truly important.

And so I wish to thank Randy Pausch, not just for his lecture and book about living and dying well, but for being a counterpoint to my own life and battle with cancer. I am truly sad to have lost the touchstone he provided me and so many others.

Saturday, July 26, 2008

An Unwanted Journey: Day 0974 - Strange Comfort

I've truly enjoyed this week of vacation with it's unscripted day trips.

Yesterday, for example, we dropped my wife off in Elora to visit the shops while my youngest son and I visited the Elora Quarry, something which, I am ashamed to admit, we had never done in over 30 years living in the Waterloo Region. As we hiked around the quarry and took our mandatory photographs, my son and I speculated on the evolutionary history and industrial history responsible for the formation of the quarry.

Later, at the Grand River Raceway overlooking the racetrack and eating some pub food after losing money at the slots, all three of us talked about some of our ventures this week, settling in on the trip to the ROM, the dinosaur exhibit and the show Darwin: The Evolution Revolution.

We speculated on how mind-boggling it was to think about the stretch of recorded human history, much less the time since the last ice age when everything characteristically human has occurred (such as agriculture, the chief visual of the previous day's trip to Bayfield and Grand Bend), except fire and cooking. And then, you start going further back into the evolution of the mammalian species, further back still to the dinosaurs, back to the evolution of multi-cellular creatures from the unicellular "soup", back to the formation of our own solar system, itself formed from the remnants of yet another solar system before that - all of which was necessary to the moment in time we enjoyed together.

I shared something with my wife and son then, something which I guess I might as well call "a strange comfort". It's the idea that as one contemplates life and death, particularly one's own individual life and death, there is a strange comforting realization, derived from the vast stretches of evolutionary time, that my particular life doesn't matter. Then, juxtaposed to that realization, is the opposite realization that just this very moment with the reality of loved ones beside me having fun together, it matters very much.

But it's only when the two are held together in a kind of split-screen reality that the strange comfort occurs. On one half of the screen is a visual representation of the evolutionary vista of our solar system, life, and the geological shifts responsible for the creation of the Elora Gorge. Then, on the other half of the screen, are moments from one person's life, moments of making a difference by personal effort, whether that moment is eliciting a laugh from your son, solving a problem with understanding a piece of software for a customer, writing a meaningful blog post, painting a landscape, cooking a meal for the family...and so on.

One gets comfort and meaning where one can when contemplating cancer or any other life-threatening illness. My strange comfort - now so named - is the realization that my life both doesn't matter much in evolutionary time and yet matters very much for the ripples which I create in other people's lives.

Friday, July 25, 2008

An Unwanted Journey: Day 0973 - Cancer Talk

So why bother blogging about cancer at all? Isn't it better to simply shut up, do the treatment, put on a happy face, and hope for the best?

Maybe. It depends on who you ask.

If you ask those who blog about their cancer, chances are you're going to get responses asserting the therapeutic value of blogging. Today, for example, four regular cancer bloggers are holding a so-called "Cancer Bloggers Reunion" at Cancer Lifeline in Seattle on the topic "Why We Blog". But that's only four people among the estimated 35,000 bloggers in the United States alone who blog regularly about their battles with cancer, the medical system, friends and family, sex and blogging itself.

Cherie Black, a reporter with the Seattle P-I, has an article online today - "Blogs help cancer patients cope with disease". In the article, she talks about those women who will be participating in the cancer bloggers reunion today. They blog for a variety of personal reasons; as a soapbox, to get help from others with rare forms of cancer, to encourage others newly diagnosed, to use humour for therapeutic benefit, and so on.

I think I appreciate why they do this.

My blog provides an opportunity for me to research and compile that research into easily digested short subjects. It allows me to communicate to a broad audience with a single message. It provides a catharsis. It simply publishes news of how treatment is progressing to family, friends, and colleagues. It offers a means of communication and social networking when other means are either too difficult, time-consuming, or draining.

I blog because I can.

Sometimes that means I'll slip into a zone of self-centeredness, something alluded to today in Leroy Siever's blog "It's Not All About Me". After all, cancer affects just about everyone you talk to these days. So, occasionally, those who blog will naturally get "blogged down" by their choice of coping. I say, "so be it."

Some people will choose silence, a grin-and-bear-it attitude. Some will choose support groups in their neighbourhoods. Some will choose a few close friends. Some will choose conventional media. Some will choose new media like blogs. The point is, different people will choose different avenues of coping and dealing with cancer.

The great thing about cancer blogs, though, is that they provide patients and care givers with options, not just about therapy, but emotional responses, about appropriate and inappropriate behavioural responses, about everything connected with the experience of cancer.

Cancer talk may not be the only way to cope. It may not even be the best. But it is one way that works for many of us.

Wednesday, July 23, 2008

An Unwanted Journey: Day 0971 - Being Selfish

"You either die a hero, or you live long enough to see yourself become the villain." - Harvey Dent, The Dark Knight

...or maybe both.

It's one of life's ironies that, difficult as it is to follow the maxim "Know thyself", it is both more difficult and far easier for other people to know you.

Why easier?

If you've read Malcolm Gladwell's Blink, you will have understood the concept of rapid cognition, the idea that one can come to an accurate impression of another person or object in the blink of an eye. With a few exceptions, it's safe to say that these fleeting impressions are not only accurate, but will last for a very, very long time.

This week, my wife and I met with a social worker at the Grand River Regional Cancer Centre to discuss counselling needs for me and my family in the wake of the diagnosis of metastatic colorectal cancer (MCRC). To put it quite bluntly, I was concerned about the extent to which I should become "selfish" about my own needs and the needs of my wife and two sons. Clearly, there was a personal sense of guilt surfacing as I struggled to say "No" to some people.

The social worker listened very carefully and summed up her impressions this way: "I've known you for less than 20 minutes, and you are not a selfish person. That much is very obvious to me."

Now, either I pulled one over on her, or the Blink phenomenon was at work.

This morning, as my wife and I mused over cafe late and cafe mocha at Starbucks, we reflected on our recent experiences. Later, as we walked to the car, I asked her, "We've known each other for 37 years now. Do you know me?"

"Better than anyone else in the world," was her response.

And yet our mutual attraction - which has lasted all these years - began in the blink of an eye, confirmed by the most fleeting of initial conversations. Those impressions were accurate and lasting.

So why is it more difficult for other people to know us?

For other people, there may not be the luxury of a clear and clean first impression. Alternately, there may not be the opportunity for long-term exposure and in-depth conversations and mutual experiences to confirm or deny the "measure of the man". But such individuals will still hold to preconceptions, presumptions, and expectations that make a reappraisal virtually impossible. In other words, what they see is not what is really there.

This happens with family. It happens with childhood friends. But it rarely happens with lifelong friends or with individuals with whom you have consistent, important relationships. As Gladwell will admit, sometimes the Blink experience is, simply put, incorrect and requires reappraisal. In those cases where first impressions are incorrect, what is needed is long-term interaction and a willingness to cast aside preconceptions.

So, as I approach another round of surgeries and chemotherapy, and as I deal with my sense of guilt about becoming more self-centred and preoccupied with my own needs and those of my family, I need to remember this. Both those who know me well and those open to the Blink experience confirm that I am not intrinsically selfish, but that I need to become more selfish if even for a few months. Or however long it takes.

The roller coaster ride that is cancer is just as much about issues like this as it is about medical treatment.

Monday, July 21, 2008

An Unwanted Journey: Day 0969 - Our New Treatment Plan

My wife and I met with the oncologist today who specializes in liver surgery.

On the diagnostic side, he confirmed that there were three, not two lesions, two on the left lobe and one on the right. It is the one on the right that is the difficult one since it sits adjacent to both the biliary duct and the hepatic portal vein.

So, among the several options we considered, I chose what I think offers the best survival odds. It’s a two-stage surgical approach with chemotherapy after the first and second stages. Currently, my first surgery will be on 10-Sept to cut out a large chunk of the left hepatic lobe, removing the two lesions that are more readily dealt with surgically. After about a month, I’ll start chemotherapy with Avastin and FOLFIRI. That will take approximately 12 weeks, if there aren’t any complications. Then, we’ll restage the remaining lesion to see if it has shrunk enough to allow a second surgery on the right side of the liver. During the restaging we will also be checking to see if any further lesions have developed.

During chemotherapy, we’re hoping to have some liver re-growth on the left side so that if and when we can do the right side, there will be more liver function available in what liver tissue is left. Unfortunately, the chemotherapy will almost certainly damage the liver, making surgery difficult at best.

So…the news overall isn’t great. But we have a plan, a very aggressive plan.

Saturday, July 19, 2008

An Unwanted Journey: Day 0967 - Cancer, Chocolate, Fruit and Wine

That may well become my new mantra over the next few months.

Yes, cancer - that's the reality check. MCRC (metastatic colorectal cancer), to be precise.

Chocolate - life is so much sweeter with the end product of grinding cacao beans into a paste (thanks to my niece and family for bringing along tasty treats as a gift today - we enjoyed bits and pieces all the way back to Kitchener from Grimsby; thanks to my friend, John, for a full box of Xocai nuggets; and thanks to my colleague for some hard-to-find Ritter Sport dark whole hazelnut chocolate).

Fruit - making the trip to Stoney Creek and Grimsby today meant stopping for fresh blueberries, plums, and sweet cherries fresh from the trees of the Niagara fruit region. What makes it even sweeter is knowing that such treats, along with chocolate, help fight and prevent cancer growth.

And then there's wine - Puddicombe Estate Pinot Noir and Chardonnay, to be exact. Despite many years of enjoying the fruit of the vine, Puddicombe Estate Wines are new to my wife and me...until today. After surgery, of course, I won't be drinking wine for at least a few weeks - liver resection might mean an even longer hiatus from vino. And most probably, during chemotherapy, it might also make sense not to drink wine. Whatever - the rest of the time, apart from tea, I will constantly remind myself that there is no beverage with a longer and better association with civilization than wine. And do I need to say this? I am a civilized man!

Yes, cancer is an ironic reminder of mortality (ironic because cancer threatens life precisely because cancer cells have achieved a kind of immortality in the body). But what makes life so special for civilized men and women is the nourishment of good food, drink, and companions.

Today, my wife and I enjoyed visiting with family, especially seeing our grand nieces and nephews. We also enjoyed discovery of Cibo Osteria E Cafe in Grimsby, an Italian restaurant with wonderful panini and infused fruit tea - raspberry and peach for today.

So, there it is. People and passions...maybe the best one-two punch against cancer that there is.

Friday, July 18, 2008

An Unwanted Journey: Day 0966- The Knife

Some very good news...relatively speaking - I'm eligible for liver resection surgery. Monday afternoon, the surgical oncologist and I will talk about how and when it will happen, going under the knife for the second time in less than 30 months.

So why the happy mood? Well, as I choose to see it, I've just improved my survival odds by at least 300%. True, the 5-year survival rate on average is still less than 50%, but the image that keeps coming to mind is from the final scene of Monty Python's The Life of Brian (voted by many as the greatest comedy film of all time). If you've seen the movie, you know precisely where this is going.

Eric Idle wrote the song that was featured in that famous last scene - Always Look on the Bright Side of Life. The protagonist is sentenced to death by crucifixion. As all the rescue attempts come to nothing, one of the other characters being crucified alongside Brian attempts to cheer him up by singing the song. Soon, we see 140 other people being crucified all singing along.

As the anesthesia takes effect, I'll be doing my best (while counting backwards from 100) to recall this image.

Sunday, July 13, 2008

An Unwanted Journey: Day 0961 - Supportive Options

It's written on their faces. It's intoned in their voices. It's embedded in their email text. People struggling to provide support in whatever ways they can.

Leroy Sievers has spoken about this in his My Cancer blog on NPR frequently - what do you say to someone with life-threatening cancer?

The answer to the question is actually quite simple - something. It doesn't matter how skillful you are, how many right or wrong things you say. What matters is that you say something. What matters is that you talk about both the situation at hand and the other things that we would talk about apart from the situation at hand. What matters is not taking the easy way out, avoiding saying something, avoiding the person, avoiding the obvious.

It's true - there may be some things you might want to avoid, but they are relatively few in number and should be obvious to someone with a modest sense of propriety. You might not want, for instance, to talk about your ingrown toenail as a point of comparison to someone with metastatic colorectal cancer. But talking about your grandmother's struggle with ovarian cancer, or about how the off-season is going with the Toronto Maple Leafs or the Toronto Raptors is definitely fair game.

Having a good laugh is always welcome. A buddy and I, for example, talked today about rules for flirting with younger women ("don't flirt with anyone whose mother is ten years younger than you are").

Another colleague related a story about his father that was perfect for the moment:

"When told that one of the options for his prostate cancer was castration and that he would never have an erection again, the father responded, 'I haven't had an erection since the Olympic Games.' His son turned to him and asked, 'Which Olympics?'"

Definitely, at the right time, humour works.

Shared vulnerability also works, again as the situation and mood dictate. Speaking of comparable situations you have experienced in your own life history demonstrates a sense of "getting it" and indicates a willingness to participate in the emotional landscape of the patient.

What doesn't work is totally inappropriate comparisons and poorly timed seques into your own emotional territory. Again, these aren't hard and fast rules so much as guidelines. A cancer patient doesn't mind at all talking to you about your own life concerns. After all, we care as much about you as about this damned cancer that's eating away at our shared time together. It's the avoidance that's key here. If you want to talk about scraping the bumper on your car, great. But it shouldn't be because the bumper is obviously more important to you than squarely facing the reality of the elephant in the room.

But with that said, the elephant in the room isn't the only reality that matters. What matters is that you're here, you've said something in an attempt to identify with me, you're present in a meaningful way, and that you haven't avoided the obvious. Sometimes, all that matters is the hug, the squeezing of the hand, the attentiveness, the phone call, the email, the prayer.

Friday, July 11, 2008

An Unwanted Journey: Day 0959 - Optimism and Realism

It's stage IV metastatic colorectal cancer with metastases to the liver.

So, it's official. The tumour board meets next Friday to review my case and determine a treatment plan. I will almost certainly have chemotherapy as a primary treatment protocol, using avastin with Folfiri. I may be involved in a clinical trial for a PET scan. And, if I am really lucky, I'll be eligible for a liver resection.

Why lucky? Because surgery is just about the only treatment currently which can speak of a curative plateau. Optimistically, I'm young enough and healthy enough with liver lesions in a location where we can seriously consider resection. But realistically, five-year survival statistics aren't great, less than 50%.

I will choose both optimism and realism - optimism because I truly believe that thinking that way improves my mental health and helps prepare me for the rigours of chemotherapy and surgery - realism because there isn't any point in ignoring statistics and general outcomes completely.

One of the strange things about today was my relative calm. My wife and I asked questions, I got some more blood work done, and then we both went back to work. Sure, we talked about some of the implications of the diagnosis, about the seriousness of the anticipated treatment, and about the uncertainties of the prognosis. But for both of us, there was a sense not of resignation, but of peacefulness which I can't really explain.

Perhaps it's because we've both been here before. We know what to expect from both surgery and chemotherapy. We know that we have a reserve of strength and the support of family, friends and colleagues. We know that our medical team is excellent. And I guess we've learned that there are no guarantees in life, that it's foolish to expect life to be fair, and that there are some things beyond our control. But what is in our control is how we react to what life throws at us.

Maybe we've learned that choosing optimism is a very realistic and sensible approach to even a life-threatening illness.

Thursday, July 10, 2008

An Unwanted Journey: Day 0958 - Anticipation

What do you do when you're waiting to hear an oncologist tell you that your cancer is back?

In my case, I work, I watch television (mainly comedies and sports), I write, I read, I talk to family and friends, I kiss my wife and hug my sons, and I think...or, more accurately, I anticipate. Will I be eligible for liver surgery? Will they want to do chemotherapy right away? Will they want another colonoscopy? Will they want a biopsy?

Even more importantly, will my career take another body blow? Will I gradually get pushed to the sidelines as treatment interferes with just about everything? Will I survive for a few more years? Will I survive for a few more months?

I know...just a little morbid. Anticipation isn't as useful as some of the other strategies I use. The problem is it's the default strategy when the others aren't available as options.

Tomorrow I get some answers. Then, I'll have more questions. Then more waiting and more anticipation.

Saturday, July 05, 2008

An Unwanted Journey: Day 0953 - McFadyen new head of GRRCC

My surgical oncologist, Dr Craig McFadyen, has just been named the new head of the Grand River Regional Cancer Centre. In addition, he is the regional vice-president with responsibilities for the cancer centre and the Waterloo-Wellington regional cancer program.

I am so grateful that he took a lead on my initial diagnosis of colorectal cancer, helped craft the treatment protocol, performed several colonoscopies and sigmoidoscopies as well as the low anterior resection which removed the tumor from my body, and has been actively involved in my follow up consultations since.

Although his leadership and administrative responsibilities mean that he will spend less time in surgical practice, I have every confidence that he will continue to keep abreast of the most current medical treatment protocols to the benefit of all who find themselves, like me, in need of treatment from the GRRCC.

I especially appreciate that one of his goals is to include more patients in clinical trials. As I now face the prospect of liver metastases, clinical trials may become a significant treatment option for me personally.

If anything positive can be said about the prospect of having lesions in my liver, having access to the best radiation therapy in the province, the second-best wait times for chemotherapy in the province, and one of the best surgical oncology teams leaves me hopeful.

Friday, July 04, 2008

An Unwanted Journey: Day 0952 - Profiling Treatment Options

"When patients know more, everyone benefits." - NexCura

The American Cancer Society has an interesting treatment profiler tool available for a number of cancers. In my case, the profiler I'm interested in is the colorectal cancer type: recurrent.

Liver resection is clearly the standard for the best prognosis for 5-year survival rates - 25-40%. But there are many conditions required to be considered a candidate for liver resection treatment:

  • no evidence of metastatic disease other than the liver

  • the primary tumor site must be completely controlled

  • no major structures in the liver may be involved (hepatic artery, major bile ducts, and the portal vein) or even close to the lesions

  • there must be enough healthy liver remaining to function normally

  • the patient must be able to tolerate the surgical stress

So, clearly, I have a lot of questions to ask the oncologist next week about my eligibility for liver resection. But apart from that option, there are other treatment possibilities, including:

  • hepatic arterial infusion (HAI) chemotherapy: drugs delivered directly into the liver, usually through a catheter and a surgically implanted pump

  • radiofrequency ablation: using heat to destroy tumors, usually under general anesthesia during day surgery

  • microwave coagulation: ultra high-speed microwaves delivered through a probe in cutting and cauterizing the tumor

  • novel radiation techniques and delivery systems: such as Intensity Modulated Radiation Therapy (IMRT), Image-guided radiotherapy (IGRT), Extracranial Stereotactic Radiosurgery, and Selective Internal Radiation Therapy (SIRT)

  • clinical trials

In other words, it gets very complicated very quickly.

While I appreciate the information Nexcura provides through the American Cancer Society's web site in its Treatment Options Report, this is only a first step. It's about gathering some useful information to be prepared when the oncologists start talking about least I hope they talk about options!

But this weekend, after this bit of research, I think I'll take a break and watch the Wimbledon finals and some more CFL action.

Wednesday, July 02, 2008

An Unwanted Journey: Day 0950 - Lesions on the Liver

A colleague at work loaned me a book by Neil Peart called Ghost Rider: Travels on the Healing Road. At one point in the narration, Peart talks about how he had once thought, "Life's great; people suck." Then, as he dealt with loss and sorrow, he came to realize that the exact opposite was true, "Life sucks; people are great."

Simple wisdom, to be sure, but it could just as easily have come from me. It's a lesson I'm learning in spades these days as I seem to get more bad medical news. In getting the news, I am constantly surprised how random the vagaries of life are and how truly compassionate and helpful most people are. One thing cancer teaches is just how wonderful family, friends, and colleagues can be.

Today, for instance, my family physician came back from his holidays to see me in his office to review the test results of the CT scan. It appears that I have three lesions on the liver - 2 of them are 3.2 to 3.4 cm in length and on the left hepatic lobe, the other a little smaller at 1.3 to 1.74 cm in length and on the middle hepatic wing. I haven't done enough research yet to know what the chances are that the liver metastases are resectable or not, but I'm sure my medical and surgical oncologists will have something to say about that.

While I must remain optimistic, the main reason why colorectal cancer is the second leading cause of cancer death in the western world is because of liver metastases (in fact, Medline Plus goes so far as to say, "patients with metastatic cancer to the liver usually die of their disease"). Some more positive statistics from the American Cancer Society from 2006 speak of up to 25% of those with liver metastases undergoing curative resection with 5-year survival rates now over 50%. In one study, up to 71.5% survived for 5 years or more with resectable metastases.

But, as I learned when I was first diagnosed, statistics are only useful in talking about aggregates and trends. They don't help much on an individual case-by-case level. My situation could be better or it could be worse that the statistics imply.

So many questions! Can the left hepatic lobe be resected? What about the middle hepatic wing? What chemotherapy or immunotherapy options are available? What about radio-frequency ablation (RFA) and chemoembolization?

The answer to these questions will be mainly about people, people who know, people who care, people who can do something. And even those who don't know and can't do anything medically...well, they're already stepping up and offering me support. Yes, I may have liver metastases, but I've also got a lot of great people on my side.