An Unwanted Journey: Day 1034 - Palliative Chemotherapy

No real surprises.

Avastin and Folfiri will be the drugs of choice, administered in much the same fashion as I received Folfox during the first chemotherapy treatment. We will go to the chemo suite every two weeks for about 3 months and receive an infusion of Avastin, leucovorin, irinotecan, and fluorouracil, followed up by another 46 hours of continuous 5-FU administered through the "baby bottle" I will carry with me after each cycle in the cancer centre (I'll get another PICC line put in place shortly after Canadian Thanksgiving in October of this year).

We have to wait for at least 28 days after surgery before Avastin can be administered since the drug has been linked with post-surgical bleeding, clotting and slower healing. There will also be another CT scan to use as a baseline to evaluate how well or how poorly the chemotherapy is working. After 6 cycles, we'll pause, do another CT scan and determine whether I'm responding to the drugs. If I am, we'll continue to the 7th treatment cycle and so on until we reach the end of what the provincial government will fund with Avastin (that is somewhere around 12 treatment cycles). At that point, we can continue with the Folfiri alone or switch to Folfox.

If the benefits of chemotherapy become minimal, there will be options to consider other drugs like Erbitux, delivered at a hospital in Buffalo, a monoclodal antibodies treatment, and even some clinical trials in Princess Margaret Hospital in Toronto. But, every time we try something different, the chances of a good response decline even further.

Twenty to 24 months survival is the average for someone in my situation. But my medical oncologist has clinical experience with patients who have endured beyond that length of time. And friends have just written to me a few moments ago telling me about a brother with a similar diagnosis who is still going strong 2 years after, playing golf, traveling and having good quality of life. As they said, there definitely is hope.

As far as eligibility for treatment is concerned, as long as there is some kind of useful response and I can get out of bed to receive treatment, I will be entitled to get it (apart from the bureaucratic nonsense and restrictions applied by the provincial government to Avastin treatment - which costs about $6,000 per month per patient). If my white blood cell count gets dangerously low, we'll take a break or do something to raise the levels. If the treatment isn't working, we'll stop...plain and simple.

Determination of quality of life, as you might well anticipate, will be mainly up to me. If I need a break, we'll stop treatment for a while and I can take a vacation for a week or two.

There will definitely be side effects to consider, but I probably shouldn't worry too much about that until the treatment is underway. Each side effect has a treatment plan which we can implement immediately, but some of the dangers of chemotherapy are life threatening - fever and infection being the two most obvious examples. Diarrhea, mouth sores, hand and foot syndrome, nausea...by now we all know the drill.

Returning to work during treatment is one of the most difficult decisions to make. My oncologist made it very clear that almost all of his patients do not return to work, for a variety of reasons. They never perform their duties at the same level as they did prior to beginning treatment. They have to be very careful about infection. The side effects interfere with on-the-job duties. And, of course, there is the important issue of conserving energy and vitality for the fight to maintain one's health.

It' still my decision, so I'll be giving it a lot of thought.

But given everything we've considered thus far, I think I'm ready to go for the treatment.

I'm sad, to be sure. I can't help thinking about my wife and my sons and all the major life events for which I will not be present. But even more painful is the realization that when I am needed I won't be available to them. In a way, for me it's simple. They are the ones who will be stuck with those difficult "what if" moments and wishes that things could have turned out otherwise. But there isn't anything at all I can do about any of that except prepare well and meet my end as best I can. And, on the positive side of the ledger, I have time to prepare for end of life, to determine as much as possible the attitudes I will embrace as I face it, to enjoy the days ahead, and to leave a legacy of a life well lived and a death well met.

Having said all that...I'm hoping that people will look at me in two year's time, as my four-year-old niece did recently, and say, "You don't look sick!" Or even as my medical oncologist did today, "Apart from the healing from the surgery, you look really good." (he didn't like the looks of what remained of the blood blisters).

Quality of life starts NOW - tonight we order in pizza and I'm going to have some red wine for the first time since before surgery.

An Unwanted Journey: Day 1033 - A Tragic Optimism

"Unconditional faith in an unconditional meaning..."

I've mused on occasion in this blog about the future, about the loss of thinking about the future during my first bout with colorectal cancer, about the return of future thinking as I entered my "no evidence of disease" period, and finally about this second challenge and its frontal attack on my personal future. I've also recently reflected on narrating one's life story in the face of prognoses of one's own death.

At other times, I have railed against the tyranny of those who demand optimism or positive thinking on the part of cancer patients. The implication of those making such demands is that somehow one has a choice to live or die depending on the degree of optimism one can generate. Personally, I think this is pure nonsense, a cruel and insensitive way of shifting guilt around like deck chairs on the Titanic. It's something like the implied guilt of some religious people who act as if a lack of faith is the reason people die of disease. At best, such thinking is unsophisticated, at worst mean spirited.

But I'm left with a quandary. If optimism cannot be generated willy nilly, but if a positive attitude really does make a difference at least for quality of life, then we still have a problem about how one can realistically assess one's future while capturing the essence of hope or optimism.

Logotherapy suggests that optimism cannot be generated, but must be perceived or found. One analogy is true laughter. You cannot make someone laugh without giving them a reason to laugh. Once the reason has been given, the laughter is automatic. Optimism is discovered when one perceives meaning. When one discovers the meaning of one's life, optimism arises naturally, even as one faces one's own imminent death.

Logotherapy then goes on to suggest that one discovers meaning through one of three things: work, love, or suffering. Doing something useful clearly establishes meaning. Mutual care and concern for others also generates meaning. But suffering?

Suffering can be a means of transcending oneself, by taking the raw materials of loss and pain and constructing an opportunity for growth. This isn't about masochism. The suffering must be unavoidable. But once the unavoidable occurs, the opportunity is present.

As I anticipate Plan B palliative chemotherapy discussions tomorrow, I think some of my ruminations may be starting to reach pay dirt. Right now, I'm not sure about the future of work in my life, although I can obviously continue to do deeds that help others whether or not I am paid to do so. Love? Well, here I'm very lucky. Love will always provide meaning for me. And suffering? We'll see. I may have to develop some new skills, but I feel confident that I'll find resources not just in myself as I dig deeper, but in the biographies and stories of others. People like Randy Pausch and Leroy Sievers whose memory and example offer me a pattern to follow.

An Unwanted Journey: Day 1031- Sleep, the Great Healer

The surgeon didn't complete the left lateral segmentectomy - the liver resection. Too much cancer, especially outside the liver in the walls of the abdominal cavity. But in order to make the determination that surgery was no longer an option, he did have to perform a laparotomy, leaving me with a chevron-shaped incision about 14" long.

That's part of the reason why I was given an epidural for pain relief, something that, despite the fact it requires special nursing care and observation for a few days, left me with minimal pain and problems getting around. I still had general anaesthesia, of course, but despite that, I was awake for a good 2 1/2 hours in the intensive care unit starting at 10:20 am a week ago Wednesday when I regained consciousness.

I thought I was fully aware of everything going on around me, but it wasn't until I was being wheeled out of intensive care to the acute care observation unit and saw my wife in the hall outside talking to the surgeon with tears in her eyes that I realized the outcome wasn't good. I felt no serious pain, but I knew then that we were going to have a tough conversation.

It took me another couple days before I had my low moment when my wife and eldest son visited me in the hospital. The realization that no curative options remained and that all decisions I would make going forward would be ones I had hoped not to face for many years left me weak, sober, and terribly, terribly vulnerable.

Physically, I felt reasonably good. In fact, by Sunday afternoon, I was getting into the car to go back home. By Monday afternoon, I had rented a medical bed, watched Stranger Than Fiction once again, written another blog, and was wondering what I would do to pass the time until the following Monday when I would meet the medical oncologist to discuss chemotherapeutic options.

But general anaesthesia does a number on you that takes a while to work through the body. By Monday night, all day Tuesday, and again Tuesday night, I felt like the wheels were off my physical recovery and that if this was life I didn't want any part of it. There was no sleep, just a few minor moments of rest between trips to the washroom as my digestive system turned back on and adjusted itself accordingly.

When you don't sleep, thoughts and images tend to shape your experience. I distinctly remember the chaotic thoughts of comedy versus tragedy shaping my physical experience both nights, only broken occasionally by the realization that it was just my digestive system wreaking havoc. I wasn't really participating in some kind of cosmic dance or struggle for my soul. I was simply in pain with delusions shaped by recent thoughts and themes.

So, in moments of clarity, I decided to eat almost nothing while my system adjusted, rest when I could, and avoid thinking too much. It worked. By Wednesday, I began regaining perspective. Wednesday night I slept for a couple hours at a time. By Thursday I was able to entertain my parents for a visit in the afternoon. Thursday night I slept very well. Sleep is miraculous.

But yesterday wasn't without incident either. I awoke to a desire to do things and take action, however minimal, only to discover that my skin was bleeding around the edges of the tape holding the incision dressing to my abdomen. We drove to see my family physician and he confirmed my diagnosis of a skin sensitivity and prescribed a topical antibiotic/corticosteroid cream to be applied directly to the affected areas. I drove the car home, took off the incision dressing bandages myself, and applied the cream - and then almost collapsed from fatigue.

Since then, I have recovered energy, felt more like eating again, and been able to find much needed sleep. I've even enjoyed watching Discovery Channel specials on the four-winged dinosaur and the dinosaur mummy, Leonardo.

There will be many more tough days ahead. In fact, if I wasn't already fully aware of that, all I had to do was listen to my family physician tell me how sorry he was for the outcome of my surgery, to offer me access to him and his office, unscheduled, anytime, and to applaud me for my practical attitude and thinking about palliative care and about the balance of quality and length of life - in other words, offer his condolences. So much said in so few words.

But it's Friday morning. My skin abrasions are healing. I'm no longer taking anything stronger than an occasional extra-strength Tylenol for pain, I'm writing another blog entry (at length), and I'm wondering how I can ever keep up with my research and reading interests. It's sunny and we have forms to fill, questions to prepare for the medical oncologist and visits from friends to anticipate. It's another good day. Thanks mainly to sleep.

An Unwanted Journey: Day 1027 - Comedy or Tragedy?

"You're asking me to knowingly face my death?...This is really bad timing." - Harold Crick from Stranger Than Fiction

But there really isn't any good timing, is there?

Well, maybe, if somebody told me that I had another 50 years, that I would write a best seller, that I'd get to dance at my granddaughter's wedding, that I'd be somehow influential in achieving world peace...well, maybe then knowing the time and date of my death might be considered good timing.

Maybe that's it. It's not the timing. It's not knowing in advance. It's being an active participant in shaping the future. It's working towards things that matter, whether or not the target is actually reached. It's surrendering those life strategies that work in highly artificial situations, but not so well when facing life-and-death scenarios. It's about choosing what your life means.

That's part of the reason why Stranger Than Fiction is such an amazing movie for me. We'll probably never awake one morning to find someone else's voice narrating our own life story, but if we aren't actively creating the screen play of our lives, then that's what's happening by default, isn't it?

Harold is shocked into attempting to change the course and meaning of his life by the realization that someone else is plotting his life. At first, he and his literature mentor try to figure out the narrative structure and determine whether his life is unfolding as a comedy or a tragedy. If Harold were told that he had inoperable Stage IV cancer, chances are he would consider that a good indication that his life was a tragedy. In the past few days, I've wondered if that is the direction my own life story is taking.

But comedic moments keep happening. I find myself even creating them at times (see yesterday's rather pathetic attempt at sarcasm). Today, my wife and others with whom I've communicated have helped me create levity and laughter which push at the chevron incision of my midriff ("U, ya checky wee monkey...keep yer chin up, ya wee git").

And then there are those moments that are neither comedic nor tragic, but "merely" inspirational and touching. Dedicating a 10K run at the Terry Fox Run with its symbolic yellow ribbon around a tree in Bechtel Park. Or claiming I helped her to a second-place finish in the duathlon national championships on Sunday in Montreal by comparing our respective situations. Or the many Facebook comments and notes and email wishes for better times ahead.

So, whether you believe in a divine narrator or, like me, that we are responsible for providing the meaning of our own lives, knowing the time of your death isn't really that important. Knowing whether you're part of a tragedy or comedy may not be that important either. But knowing that you are participating in creating the narrative of your own life, that you are open to the tragicomic elements of life in general, that others help you shape the meaning of your life, that your own life is actually stranger than fiction - this all matters a great deal.

An Unwanted Journey: Day 1026 - 'Gimme That Old Time Sarcasm'

"How many languages do you speak?"

"Two. English and Cancer."

"Cancer? What do you mean, Cancer?"

"Carcinoma - repeat after me - KAR-sih-NOH-muh: a cancer that begins in the skin or in tissues that line or cover internal organs."

"I know what cancer means, but I was asking how many languages you speak?"

"Two. English and Cancer."

"Uh...OK. Let me put it this way. Cancer isn't a language, sir."

"What do you mean, 'Cancer isn't a language'? It has a vocabulary. 'Adenocarcinoma.' It has a grammar - subject, verb, predicate - 'Cancer sucks the big one.' You have to learn it, right?"

"I'll put down one - English."

"Let me ask you a question."

"OK. What would you like to know?"

"Do you still beat your wife?"

"Aaaah. Let me jot this down. Patient exhibits signs of hostility and anger."

"Jot this down too. 'Patient has a sore ass from a low anterior resection and from talking to too many bureaucrats with shit for brains.'"

"Patient is becoming abrasive and insulting."

"Did you graduate from kindergarten, or did they just give you a social promotion?"

"Maybe we should do this another time, sir."

"Can you find your way out of the room, or should I call for a travel guide?"

An Unwanted Journey: Day 1026 - Madmen Waiting

It's an odd experience watching a television screen on a notebook computer in a hospital room while someone else is watching that same screen in a different location in the city.

That's what is was like tonight as I waited and my wife waited in two separate locations. With the SlingBox, I pop open the SlingPlayer software application and can see whatever someone else is watching on the television specifically configured with that device at home. Either one of us can take control and switch channels, her with the actual remote, me with a virtual remote control. In fact, doing so is something like saying "Honey, I'm home...you can't see me, but I'm here."

She was waiting for my son to finish up a late catering job in the early hours of Sunday morning. I was waiting for sleep and for the next oral pain medication to come my way. So, as she changed the channel to Bravo where Mad Men was playing, we both waited.

It felt not only weird, but ironic. Watching each other waiting, although we can't see one another. Waiting for other people, in one case because we want to provide a service, in the other case because we want to receive a service. All the while realizing that the most recent cancer bad news bears don't care one whit about how much further waiting either one of us must perform.

Is it unfair? Obviously. In fact, the diagnosis couldn't get much worse. But that doesn't change the waiting. Just because you're told your cancer is inoperable doesn't change the mundane reality of waiting for drugs, waiting for the doctor, waiting for the nurse, waiting for relief, waiting to be discharged, waiting...always waiting.

Watching Mad Men together across cyberspace just highlights the irony.

Mad Men is about the advertising game of the early 60s. It's about a world of inequality between men and women, between the haves and the have nots, between virtue and vice, between need and want. The fact that so little has changed in the intervening 45 years only serves to accentuate how strange is the world in which we live.

Imagine this - two people watching the same television without being in the same location, watching each other wait, while they are themselves waiting for the world to change, waiting for better times ahead without many physical options available to make changes on their own behalf, waiting for sleep, waiting to live, waiting for a phone call, waiting to go home, waiting to leave home...waiting, waiting, waiting.

An Unwanted Journey: Day 1024 - Being Real

"Extra-hepatic carcinoma. Unresectable metastatic colorectal cancer. Palliative care. Extended survival. Quality of life."

Those are the terms and phrases with which I will become increasingly familiar in the next ten days. On 22-Sep-2008, I'll be doing more blood work and having a consultation with my medical oncologist to discuss palliative chemotherapy. We'll discuss in fine detail the risks and the side effects of the drugs I'm being offered and weigh those against the possible benefits. Between now and then I will have to design a model of how my end of life should look, not just how my treatment will work.

But for today, as I came to the realization of how difficult this will be, it was all just a little overwhelming. It all felt surreal. I don't think I had yet realized the shock of Wednesday's abortive surgery.

When a surgeon opens you up planning to do a liver resection only to discover that your abdominal cavity is full of metastases, the surgeon is vulnerable to surprise, not just you. My surgeon told me that situations like this only happen about 5% of the time because CT scans are usually sufficiently accurate diagnostic tools to ensure that what is expected is what you get. But here's the kicker - however shocked the surgeon was, I'm the one who has to live with the consequences.

After this kind of experience, even if you consider yourself optimistic and resilient, mortality stares you down. Yesterday with my rose-coloured glasses, I talked to hospital visitors about the worst case scenario being about 24 months survival. Today, it made more sense to say that 24 months survival is likely the best case scenario. That's not to say that optimism is stupid, that I am not hoping for another 10 years, or that I won't try to beat the odds. It just means that I what I now face are choices about balancing length of life with quality of life.

It also means I'll have to try to figure out where to draw the line between what's best for me and what's best for others.To be very blunt - and as one of my good friends said to me this evening - "to hell with heroism".

• If I'm feeling good, then take advantage of that relative health and enjoy the moment.


• Put together that bucket list and set some standards for happiness and simple pleasures.


• Don't try to please everyone.

In fact, maybe now's the time to make an enemy or two - presumably someone who wants me to end my life doing things their way. I can't think of anyone who qualifies right now for my enemies list, but maybe that's the frame of mind to start cultivating.

But while I'm getting tough and being real, I have to admit I am one of the lucky guys who has a wonderful wife and two fabulous sons who are aware of the nature of my struggles. They will never add to my burden; they will help support it. They'll be right beside me agreeing with my friend who says, "to hell with heroism".

An Unwanted Journey: Day 1023 - Making the Most of It

• I'll be getting out of hospital much earlier than expected.


• I walked at least ten cycles of the ACOU ward on my first time out of bed, getting guidance and help from the physio-therapist.


• There are no plans for anymore surgery.


• Epidural pain killers are absolutely fantastic.


• I'm having great conversations with medical staff.


• SlingPlayer is saving me money watching television while in the hospital.


• I've already had two "real" meals and two clear liquid meals.


• Ian wrote a great blog post for me yesterday.


• Did I mention the wonderful pain killers?


• I have a telephone and my computer again.


• While using epidurals, I have private room care with the "cream of the crop" nursing staff in the acute care observation unit.


• The hospital bed is better than anything we have at home.


• Family, friends, acquaintances and colleagues have been unbelievably supportive.


• Unlike the last time, I've already had bowel movements starting again (OK, that was probably more than you wanted to know.)


• I've got more reading material from friends than I can handle.


• Friends are going to be grandparents of twins soon.


• I get to see my friend's "girls" soon (his three Belgian horses).

Having listed some of the wonderful aspects of the past couple days, there is clearly some very disappointing news too.

Just to clarify a little, the malignant growths that were too small for the CT scan were scattered throughout the abdominal wall and probably elsewhere too. There were too many to even consider a surgical option.

So, no more talk of a cure now. Our goal is life extension and making cancer a chronic condition with as few side-effects on quality of life as possible. Unfortunately, to do so, we will have to use brutal chemotherapy methods as the primary treatment option. Ironically, I feel great right now, but the treatment will make me feel quite sick.

Day at a time, day at a time, day at a time - my new mantra.

An Unwanted Journey: Day 1022 - Bad News, Worse News.

I had hoped to take over writing this blog under happier circumstances but today, that is not the case. Don was in surgery for two hours when the surgical team made a disturbing discovery. The surgeon found that there were many more small cancerous lumps on the liver that did not show up on the CT scan; the cancer has spread to the surrounding area. Because of this the doctor did not remove any of his liver. The current treatment plan is to go forward with chemotherapy as surgery is no longer an effective option. 

Don is looking well and currently in the acute care centre at the hospital. Unfortunately, Don's unwanted journey has taken a far different turn than what we had all hoped. Before the surgery the doctor explained all the things that could go wrong during such an operation; I never considered that it could be this bad. Chemotherapy is very difficult on my father and it only really serves as a measure to delay the spread of the cancer further. It is hard to imagine him going through that again without the goal of a second surgery to fully remove the tumors from his liver. Don will hopefully be able to return to blogging within a day to explain the issue further.

Ian Spencer

the image above is an excerpt from Black Hole, the award winning graphic novel from Charles Burns. 

An Unwanted Journey: Day 1021 - Stay Tuned For My Sons

Nothing more to say at the moment. All the errands have been completed, documents signed, instructions prepared. Twelve hours from now, the surgeon will be busy.

Tomorrow and possibly the next day or two, my two sons will take turns providing updates on the blog. I'll be back in the saddle soon after that, contemplating man and machine, pain and pleasure, and setting some short-term goals.

See you then.

An Unwanted Journey: Day 1020 - Readiness

Calls came in yesterday from uncles and aunts, brothers-in-law and sisters-in-law, friends and neighbours. Today, a former Toastmaster buddy called and is dropping off some reading material for me for hospital and recovery. This morning, as I finished off a few obligations and related tasks at work, I shared Anna Tolazzi hand-crafted chocolates with my colleagues and received their best wishes for a speedy recovery. My sons went off to Wilfrid Laurier University for the commencement of 3rd- and 1st-year classes respectively after they helped my wife and me break the bank on a very fine meal last night at Marbles. In other words, life is good and I'm ready for the next step in this unwanted journey.

There are a few minor tasks yet to be performed before putting on the dreaded hospital gowns, but for the most part, I think I can fill my head up with epic fantasy (I've finished re-reading George R. R. Martin's first two instalments in the A Song of Ice and Fire series - A Game of Thrones and A Clash of Kings and am well underway on A Storm of Swords). Not only is this pure escapist fare, my hope is that it will provide distraction and components for the pain-killer delusions and dream-time life I'll have while recovering from surgery. Swords, dragons, dire-wolves, giants, sailing vessels, gold, intrigue, sex and sorcery - it's all there and should fit nicely in the surreal world of intensive care and the surgical ward.

Again, I am struck by the essential goodness of most people. I always seem so close to tears these days, not just because of anxiety and uncertainty, but because people have been so supportive and thoughtful. The words expressed don't matter so much as the generosity of spirit and the expansive attitudes. As I've said before, "Life sucks, people are great!"

So, I think I'll keep to the basics over the next day and a half - mow the lawn, get my eye glasses tightened, get a haircut, sign a revised will and powers of attorney, enjoy some Starbucks coffee with my wife, drive my youngest son to his evening class at the university and read about Tyrion, Jaime, Arya, Jon, Daenerys and the world of Westeros (see a good map here).

An Unwanted Journey: Day 1019 - Left Lateral Segmentectomy

That's where the liver resection will occur for this first operation. The Google online book search has one resource called Contemporary Issues in Colorectal Cancer: A Nursing Perspective (2001) with a summary view of the contraindications for surgery, long-term disease-free survival, etc.

The first 24 hours are critical for post-operative nursing care because of risks associated with hemorrhage, bile leak, obstruction of the portal vein, hepatic failure, abdominal pain, even mental confusion.

There is a lot more to it, of course. But, like the pre-surgical consultation, there isn't much that I can do as an active participant. When I wake up, there will be things I can do, perhaps even while in the ICU - things like deep breathing, coughing, and leg exercises. I can gauge my pain levels on a scale of 1 to 10 and relay that information to the nursing staff (0-1 is no pain, 2-3 is mild pain, 4-6 is moderate pain, 7-8 is severe pain, and 9-10 is the worst possible pain).

Then, assuming no complications, I will be moved to the surgical ward for follow-up for another week or so.

Interestingly, in 4-6 weeks, much of the liver excised will grow back, although the shape and anatomy will probably be slightly different.

***

So, what am I going to do in hospital, besides enjoying the wonderful food and opportunity to sleep? Some family, friends, and colleagues may visit. I'll have my computer to do a few blogs. I'll have my hand-held devices for email and book reading. I'll have my iPod for listening to music, podcasts, and watching some TV episodes, listening to audible books, and reviewing some digital photographs for the past several years. And, if I'm truly ambitious and coherent enough, I'll start doing some compatibility testing of the new Internet Explorer 8 browser. That's the plan.

An Unwanted Journey: Day 1018 - "A Butt Load of Courage"

Daniel is a colorectal cancer patient. He recently commented on my blog about the television special Stand Up To Cancer. He recommended I check out the following web sites:

• http://www.crazysexycancer.com/ (about Kris Carr, the one who coined the phrase in my title line today, something which seems so appropriate for someone like me being treated for metastatic colorectal cancer)
• http://www.youtube.com/watch?v=qmjcKqXHJSM (a trailer about Kris Carr and her amazing, brutally honest, video about her encounter with Stage IV cancer)
• http://www.youtube.com/watch?v=QXpoXsniqSc&NR=1 (a video tribute to Kris Carr)

If you care about someone being treated with cancer, please visit these sites. But be forewarned that they are not easy, especially if you too are dealing with a Stage IV diagnosis, something which Kris acknowledged with her disarmingly simple statement, "I have Stage IV cancer. There is no Stage V."

She also has a spot on the iTunes video Survivors, a video podcast available to anyone who cares to download it. If you, like me, watched the Stand Up To Cancer broadcast last night, go ahead and get the video podcast. It has all of the video montage highlighted in the television special, plus a little more. And it is strangely comforting, even as the tears flow.

It wasn't all tears, though. The segment feature Homer and Marge Simpson was absolutely hilarious. At one point, Marge yells, "There's his wedding band! He told me he was getting it polished!"

I have the distinct impression that the next few months will be a slo-mo personal version of the Stand Up To Cancer special. I'm hoping that as I face the surgery, the recovery from surgery, the chemotherapy, the restaging, more surgery and even more chemotherapy, I'll be able to generate a "butt load of courage", remembering that each tear will be followed by a laugh which will in turn be followed by another tear...and, my deepest wish, by a cheer.

An Unwanted Journey: Day 1017: The Face of Social Support

This journey with cancer is as much about establishing and maintaining social support networks as it is about organizing a great medical team. Is that too obvious for words?

My wife is an excellent judge of the social networks in my life. When she asks about my day, I can tell that she is working through not only the physical symptoms - how tired, sore, or energized I am - but the experiences I've had with other people that can alleviate negative physical conditions or make them so much worse. She's good at this. In fact, when I blog about coming out of surgery while in ICU, wanting to see the face of my wife, it's not only because I genuinely enjoy just looking at her, it's also because her face wraps up what I mean when I talk about social support. I see her and I automatically feel girded and enabled.

It's like that with my sons as well. Their care and concern are genuine, readily apparent and unequivocal. Again, I derive energy just by looking at them and listening to them tell me stories about their day, the people they've met, the experiences they've had and the goals and dreams that are important to them.

I don't always have the daily boost of being with friends...sometimes I have to rely on the long-distance media of email and telephone. But those who are life-long friends are also a major part of my network, a truly significant piece of the puzzle. Shorter-term friends come from so many areas in my life - work, volunteer activities, neighbours, service providers. Again, the Blink phenomenon makes the experience of social support a palpable and virtually instantaneous experience. Even commiserating with acquaintances whose loved ones are experiencing or have experienced similar medical conditions contributes to the foundation of social well being.

And, of course, no matter how careful one is about social support, there are those occasions of negative influence, a chance encounter with someone who is pretentious or otherwise lacking a genuine centre of gravity, someone whose demeanour betrays a lack of respect, interest, or sympathy, or even someone just unable to provide even a moment of true empathy.

This is important to overall health. Some studies show how negative feelings of social well being correlate with malignant tumor growth. It's also interesting to me that there may be a difference between what is considered social support among men and women. Men may tend to appreciate straightforward information service as supportive, whereas women may need that service packaged in a more "relational" package.

But what is clear to me is that I need to listen to my wife's questions about my day. Her radar helps me attune to the positive and negative situations in my social support system. Sometimes, it's basic. "If it feels bad, don't waste time with that person." "If you leave an encounter with someone with your self esteem having taken a body blow, don't do that!"

"Yes, dear." She puts a smile on my face.

An Unwanted Journey: Day 1015: Just Stand Up To Cancer

OK, I'm a sucker for collaborative charity projects among artists. It doesn't matter so much the quality of the final product, it's the effort and the cooperation that impresses me. So last night when I got my weekly iTunes email notice, there was one that caught my attention immediately, a single and digital booklet released on 29-Aug-2008. It features a group of famous female divas joining together on a pop song encouraging us all to stand up to cancer. Both the single and the Stand Up To Cancer web site are also promoting a television special for 5-Sept-2008 dedicated to the fight against cancer.

I may be listening to the single a few times this next week as I prepare for surgery...maybe even more after the surgery.

'"If you fall, dust if off, don't let up

Don't you know

You can go be your own miracle."

An Unwanted Journey: Day 1013 - Eight-hour day

It was Robert Owen who coined the slogan "eight hours labour, eight hours recreation, eight hours rest" during the early 19th century in Britain. Today, many of us occupied in knowledge work will typically be paid on a 37.5-hour work week. That doesn't address how many hours are actually spent doing work, but I suspect most knowledge workers in general still don't completely balance 8 hours work, 8 hours recreation, and 8 hours rest.

Knowledge workers are said to outnumber all other workers in North America by at least a four to one margin. We benefit our employers by improving the company's business intelligence or intellectual capital. It would be wonderful if it could be said that we do so primarily by a balanced lifestyle in which rest and recreation are as important as time spent directly on business activities. The argument here is that rest and recreation dramatically improve productivity, that perceptive employers understand this, and that workers are correspondingly motivated to keep their lives in balance.

In fact, I think an argument can be made that this is happening. Speaking from a narrow personal perspective, some of the most productive and valuable people I see in business are those for whom balance between labour, recreation, and rest is not just a goal, but a critical pillar of their lives.

A lot depends on definitions, of course. One can define recreation, for example, as spending time on the Internet. But if you're doing so as a course of study, say to gain a certification relevant to your work as a professional knowledge worker, can we really call that recreation? Or if you're checking out your Facebook notifications from your office computer, can we really call that labour? Or if you're checking business email or other computer processing in the middle of the night, can we call that rest?

There will always be tension between laudable goals and the pressures of the moment. But today is dedicated to workers, specifically workers taking a day off work.

And there you go, a blog entry in my Unwanted Journey thread in which the word cancer only appears once!

An Unwanted Journey: Day 1011 - Why a Journey?

It's not about criticizing other people. But how often do you hear about the untimely death of a colleague or friend or family member, pick up the obituary notice and read, "XXX lost his/her battle with cancer"? If once, maybe dozens of times.

Cancer kills. There's no doubt about that. And for those of us diagnosed with cancer, there are definitely times when we feel in a fighting mood, when we choose to employ metaphors of battle and images of violence to depict the struggle in which we are engaged.

But I made my wife promise me recently that when I die I want the announcement to be different. I don't want my death to be announced as a loss in a battle to cancer. Instead, I'd like the announcement to read something like this...

"Don died yesterday after living a full life for xx years. He died at peace, with his family and friends close by, saying farewell and grateful for the journey he has completed. Cancer was part of that journey, but not nearly as important as sunshine and happy days, the wonderful years of love and growth with his wife and sons, work that he accomplished with pride, friendships that lasted a lifetime, and at peace with himself and those that mattered most to him. In this wild and wondrous universe, his journey is complete, like a pebble dropped into a pond and sinking to the bottom, but with waves rippling indefinitely and extending in all directions. And, it's all right."

When I was diagnosed with colorectal cancer and decided to blog about my experiences, I had very little time to decide on the metaphor to carry me through and characterize what was happening. I choose the metaphor of a journey. That was partially because I wanted to maintain a sense of optimism, the hope that cancer was not necessarily an acute and immediately terminal diagnosis, but something that might be chronic, unwanted to be sure, but something that accompanied me as I moved forward with my life. And then I read something that struck a chord that resonated with me - “You will choose courage and hope. Though the journey was unwanted, you will choose the way you face the future and your inner spirit will prevail.” - from the preface by Cheryl Edwards to the book The Intelligent Patient Guide to Colorectal Cancer by Michael Pezim and David Owen. It worked.

This morning, as is our custom on Saturdays, we got up early, drove each of our sons to work, then headed over to Starbucks, then down to the Kitchener Market for veggies, fruit, chocolate and marble rye bread. As we traveled along our familiar path sipping coffee, nibbling on a raspberry scone or loaf, and listening to CBC Radio 2, we heard a tune and lyric which reinforced the metaphor I have chosen - the Traveling Wilburys 1989 classic End of the Line. I hope my own "end of the line" is still a long way off, but even if it is closer than anticipated, like the song says, "It's all right."

An Unwanted Journey: Day 1010 - Scarred and Proud

Advanced colorectal cancer with metastases to the liver. But instead of a 55-year-old man, the diagnosis was for a 22-year-old female graduate student named Erika Kratzer. You can find her story here. She is also in the tasteful photograph accompanying this entry and the cover model for a calendar called 2008 Colondar, a fund-raising venture for The Colon Club.

Friends and acquaintances have suggested to me recently that my shirtless bathing suit days will probably be over now. After all, I have the long vertical scar from the low anterior resection from 2006. And this year I'll have one, possibly two, more scars from liver resections. But as I browsed through the photographs of the models for 2008 Colondar, I'm wondering whether shirtless is the way to go.

True, I don't have the body of these models, but like them I think I will eventually see my scars as a badge of courage and perseverance. Cancer takes so much away from us, not just physically, but emotionally, in lost opportunities and sometimes loss of self-esteem. But for however long one survives, the journey with cancer can also lead to self-awareness, trust in one's own resources, acknowledgement of the goodness and skill of others, and a sense that our scars are better than tatoos can ever hope to be in portraying the person within.

Remember the scene in the original Jaws where the characters played by Robert Shaw, Richard Dreyfuss and Roy Scheider compare scars? It's all about pride and fear, inextricably linked. Something like what colorectal cancer scars tell us...but to do that, you need a storyteller and someone willing to show us their scars. Come see me same time next year. Maybe I'll show you my scars.

An Unwanted Journey: Day 1009 - What Can Go Wrong

Blood tests, EKG, X-rays, consults with pain specialists, the anaesthesiologist, the pre-surgical nurse and so on. Roughly 3 1/2 hours of answering questions, filling in forms, hearing all the things that can go wrong during a major surgery like liver resection, discovering that I'll be in the intensive care unit for about 2 days before being transferred to the surgical floor, that I'll probably need blood transfusions during surgery...it's all a little overwhelming today.

I now know when to stop taking my vitamins, stop drinking alcohol, stop eating, stop drinking water, what medications to take with me, when to bathe, what to take with me, what not to take with me, the privacy policy and access code for my wife, how long I'll be in hospital, where the scar will be on my torso, what all the machines, lines, catheters, and pain meds will be, the importance of using the inspirometer and wiggling my toes while confined in the IC unit...did I say it's all a bit overwhelming?

And then I went back to work for the afternoon. Not that I was able to concentrate effectively on the tasks at hand. All I could really think about was the image of how a man can be transformed into an octopus of wires, tubes, and lines.

While waiting for each new phase in the consultations, I tried and eventually succeeded in finding the wireless access in the hospital, only to discover that what was free 2 1/2 years ago now costs the patient about $9 a day, $20 a week or $35 a month. And then there's the additional costs of phone and television access (which you can't have in intensive care, for fairly obvious reasons).

It was a wake up call. Not that I haven't been paying attention and aware about how serious this business of surgery truly is. It's just that all this pre-surgical business was like someone shaking you, throwing water in your face, or pinching you as you began to doze off. This evening it's very, very real!

But it's also slightly unreal. No matter how many times I'm asked if I have questions about the surgery or the pain meds or the general anaesthesia, there really isn't anything optional here, other than whether I want regular TV or prime TV. The surgery is something we have to do and basically all I can do well is to show up hoping for the best possible outcome. It's like being asked if you have any concerns about the sun coming up tomorrow morning or about the rain and thunderstorms we expect in the region tonight.

The reality is that the preparation is necessary. Patients need to know what will happen to them. The hospital staff needs to outline what can go wrong, even with good lab results. And I just need to get from here to there.

Two weeks from now, I'll be recovering in the ICU, happy to see my wife's face and thinking about whether I will order the television service for my semi-private room in another day or two.

An Unwanted Journey: Day 1004 - Disabled in real life

"We're OK now...it's better than the alternative." -Dan in Real Life

As the Olympics draw to a close, I'm thinking about how much of the Summer Paralympics in Beijing we'll see on TV. CBC has recently been granted permission for a new digital sports channel - CBC Sports Plus - which is slated to cover the Paralympics beginning 6-Sept-2008. Unlike the Olympic coverage, though, it seems we'll get only 2 hours of coverage on each of the 6, 7, 13, and 14 of September on CBC English TV.

I guess the disparity reflects what the general public wants to see. I get it.

But this year, as I face further surgery and chemotherapy beginning 10-Sept-2008 - right in the middle of the Beijing Paralympic Games - I'm reflecting again on what it means to be disabled. In the United States, for instance, cancer might easily be included under the definition of disability used by the Americans with Disabilities Act (ADA). In Ontario, we have the 2001 Accessibility for Ontarians with Disabilities Act (Ontario Regulation 429/07). Cancer Care Ontario is one of the customer service organizations participating in the ODA accessibility standards. There is even an online accessibility plan for our regional hospitals and cancer centre describing efforts to improve services to persons with disabilities.

Most of the time, accessibility in this context implies access to health services like cancer care for those with obvious long-term physical or mental disabilities. Cancer itself is one of those grey areas in defining disability. If the effects are long-term, then a patient with cancer might be considered disabled.

But all the debate is, when considered at a personal and immediate level, largely academic. Whether long- or short-term, when you face cancer treatment, you "feel" disabled. No matter how good the medical and support services, no matter how reasonable and accommodating your employer is, no matter how good your short- and long-term disability insurance coverage...you're still faced with losses and setbacks not only with your health but with your family life and your career.

As the lead line says, it's still better than the alternative. Nonetheless, I am now entering a second period in my life when cancer is interrupting my career and turning me into a person with disability. There are moments, despite my best efforts at grace and grit, when those other aspects of facing cancer hurt. My physical limitations over the next 6 months will be quite significant. I'll be almost useless at home in helping around the house and yard. At work, I've got to transition responsibilities to other people and hope that I can still do some knowledge work that will make a difference.

But there's really no avoiding the fact that cancer is about so much more than the risk of premature death. Yes, I'm revising my will. I'm reviewing my life insurance policies and doing estate planning. But I'm also backing off professional volunteer work, parking professional certification and other related studies, and turning over projects to other colleagues.

Every meeting I attend these days, I find myself wondering whether I'll really be able to follow up recommendations and action plans and, if so, for how long and how effectively. Sometimes I wonder about if and when I will feel productive again after surgery and during chemotherapy. And, when I'm truly honest with myself, I even wonder sometimes whether colleagues are treating me with "kid gloves" because they feel sorry for me.

Don't misunderstand me. I am appreciative of those who care and do what they can to help. And I certainly understand why transitions must be made. But it still hurts. I think I'm gaining some perspective on what everyday life is like for people with disabilities.

An Unwanted Journey: Day 1000 - Life is a chronic condition

I think it's time to shift perspectives.

Receiving news that I am now a Stage IV metastatic colorectal cancer patient, after having many months of a "no evidence of disease" status, has been really hard for me. I keep looking at the prognoses and thinking about so many other MCRC patients before me whose outcomes frighten me. Nobody is talking about a cure anymore, although occasionally the surgical option is described as the only "curative option" available.

But today is 1000 days into my "unwanted journey" and despite the set backs and problems, that's still 2 3/4 years since my original diagnosis. Apart from a cure, the next best option is to consider my cancer as a chronic condition that merits occasional aggressive therapy. I can't say that the prospects of more surgery and chemotherapy are attractive, but I have to admit that I haven't been treated for cancer since late September in 2006. I'm feeling pretty good (although I do require more rest then before treatment) and there are those days when my digestive system really does act up. But the bottom line is I'm working full days and haven't had even a single sick day off of work since I started my new job on December 3rd, 2007.

In other words, life with cancer has become a new normal for me. Yes, my life expectancy is shorter than I would like. Yes, I'm feeling older and less resilient than I would like. But I can do a lot of things, some of them really well! I'm heading into a period when I know I'll feel very weak and unable to do many things, but I still have good reason to think I'll survive this next stage in the treatment process.

My cancer is chronic. But so too is life. Death is inevitable and decline is irreversible anyway. So why not think of this next part of the journey as simply another challenge, another opportunity to grow and to make the most of the situation. It may not be simply a matter of "putting on a happy face", but perhaps it is simply a matter of grace and grit.

That's something I can do.

An Unwanted Journey: Day 0999 - Mixed Feelings

It was Thursday, November 24th, 2005 when the gastroenterologist informed me that I had a cancerous tumor in the sigmoid colon. If I count today, then that means that tomorrow will be the 1000th day since I received the diagnosis.

That's worth celebrating. I remember how I originally chose to have 4 digits in the daily count...it was a decision to remain optimistic about my chances of surviving. So much has happened since then, but I'm still kicking. Definitely, 1000 days is a milestone.

The only reason why I have mixed feelings is because of the recent diagnosis of metastasis to the liver. It's almost like getting the original diagnosis. But this time, my reaction is less one of shock and more one of disappointment and frustration, disappointment because I really thought my last CT scan would be negative, and frustration because I have been doing everything I should be doing as far as medical follow-up is concerned.

One thousand days strikes me as another good interim goal. Without good surgical outcomes, that goal will be difficult to achieve. But with reasonable surgical results, and continuing aggressive chemotherapy, I think I have a good shot at another 1000 days...minimum.

An Unwanted Journey: Day 0996 - More Farewells

Leroy Sievers died Friday. He was 53. Randy Pausch died just a few weeks ago at age 47 of pancreatic cancer. A colleague from work died of cancer less than a week ago. She was 59.

I followed, as much as possible, their efforts to live and die well. They have inspired me at times. At other times, I have used them to put my own struggles with cancer into perspective.

Today, at this particular moment, I feel a little lost. In just over three weeks, I will be undergoing surgery for metastatic colorectal cancer to the liver. The surgeon will be performing a liver resection to remove a portion of my liver with two lesions. The plan is to do an initial surgery, followed by chemotherapy, then restaging of the other lesions on another part of the liver with the goal of another resection, followed by yet more chemotherapy. The plan is aggressive and frightening. But even more so in the context of the deaths of those whose stories I have been following.

As my wife reminds me, comparisons are not always useful. I acknowledge that intellectually, but emotionally I feel bereft. Leroy's heart-on-his-sleeve daily blog entries were especially helpful to me. There were many times when what he wrote resonated, and now more than ever (Leroy was battling metastatic colorectal cancer). Wondering about whether it was worthwhile to buy new pants or shoes. Appreciating the heroics of those providing the support network in his life. Marvelling at the medical technological wonders and treatment options while still suffering their side effects. Thanking those who commented on his entries with stories of their own.

I will miss Leroy's daily musings deeply.

An Unwanted Journey: Day 0984 - Pure Presence

I'm not really there yet - here that is.

In fact, I'm still ambivalent about being purely in the present, fully engaged in the here-and-now. Why? Partly because an element of my recovery from treatment the first time was about gradually recovering a sense of the future and of the importance of planning for days, months, and years ahead (see Be Here Now ... I don't think so). I saw the movement from concentrating simply on one day at a time (and even one hour at a time while in hospital) to a growing sense of optimism about the future as a sign of health.

Now, with recurrence not just a probability but a fact, I'm thrust back into the present, not by choice, but simply by circumstance.

Too many people, in my opinion, sanctify "living in the present" and needlessly denigrate human planning and thinking about the future. Clearly, there is some kind of balance to be achieved here. But cancer makes achieving balance that much harder. In moments of melancholy, I truly feel like the future is being stolen from me, that there is something "personal" about all of this, that the injustice of it all warrants an agonizing scream for fairness. Obviously, those thoughts are not especially healing or useful. But they are part of me.

And then there are the people I love. At times, living in the purely present seems like a betrayal or failure of those I love. Sure I may feel more at peace with life, sickness, death and the universe, but that doesn't help my business associates, my immediate family members and close friends. In fact, sometimes it seems like avoidance, a simple failure to participate in life.

It's not all that bad, of course. If balance is the most appropriate metaphor, then I just have to get back on the bicycle and "feel" my way forward. Like so many things in life, facing recurrent cancer (at least psychologically) is about finding equilibrium again.

And in the spirit of getting back on the bicycle, I think I'll go mow the lawn...

An Unwanted Journey: Day 0983 - Getting Ready and Melancholy

It's been a week since I've written anything on this unwanted journey thread. A busy week, working hard, doing normal, everyday things with my colleagues, my wife and my sons. But never far from my mind is the realization that it won't be that long until I gather my hospital gown around me, pull myself onto the operating table, answer a few standard questions, receive the anaesthesia, and then awaken to nurses asking more questions.

Like a pendulum, I swing between wanting desperately to continue with the normal routine and thinking that I need to get things in order...just in case things don't work out during surgery. Today, for instance, my wife and I revised our wills. But yesterday we also visited Picard's Peanuts in St. Jacob's, the LCBO in Waterloo and other destinations essential for preparing for next weekend's annual trip to visit with family at their cottage on Taylor Island in Lake Muskoka, one of the highlights of the year for us all.

Today, I rummaged around my library for my unread book on Drawing on the Right Side of Your Brain, purchased some etching pencils and a pad of drawing paper and started thinking about overcoming my life-long aversion to drawing. Yesterday, I visited Chapters in Kitchener to pick up another book by Josh Waitzkin, The Art of Learning: An Inner Journey to Optimal Performance, after having watched the movie about Josh's early performance as a child prodigy chess player - Searching for Bobby Fischer. I reviewed Pocket PC software for chess and considered re-igniting my childhood and teen love of the game.

Maybe I'm a little crazy. But the tug of the future and of things I'd like to do and learn is battling with the urgency of imminent surgery and chemotherapy and the possibility that, this time, cancer has the upper hand. Randy Pausch called it the "elephant in the room". An apt metaphor, I suppose. But it's also like the shadow following my every move, the pop-up reminders in Outlook, and the questions in the eyes of family and friends when we meet on the street - "How are you doing?"

There are so many things I want to do and learn. I've always been a little odd that way. Mastery isn't as important to me as opportunity to learn something new. Being the expert has never been as significant a draw as knowing something about many things. But now, I'm becoming knowledgeable about things I'd rather leave to other people - what it's like having multiple surgeries, what do multiple courses of chemotherapy feel like, how do you find a vein in the crook of your elbow when scar tissue begins claiming more and more territory.

And so, I find myself saying "No" to some learning opportunities simply because I don't know if or when I'll be able to apply the learning. I find myself thinking about books and software and hobbies which yield quick returns on an investment of time and energy, that don't require more than I can give. I hate that!

I'm not pulling out my guitar these days and practicing. I'm not getting up early and studying SQL Server. I'm not learning French. I'm not thinking about certifications.

On the other hand, at work and at home, I feel more present, more in the moment. This can sometimes be very valuable and worthwhile.

I'm not depressed, but I do feel melancholic.

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.

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.

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.

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.

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.

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.

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.