An Unwanted Journey: Day 1042 - Ultimate Freedom

My "balance" friend came by last night for a quick visit and to give me a gift - "thanks so much, gentleascent!"

During our conversation, we talked about choosing the attitude with which we confront life's twists and turns. As I had just been reading Victor Frankl's Man's Search For Meaning, I named that choice as Gordon Allport did in the preface to the 1984 edition - "ultimate freedom". Frankl himself, in the second part of the book's discussion of logotherapy, says,

"every human being has the freedom to change at any instant." (p.154)

It takes very little for anyone to confirm that freedom, at least experientially (I'm not making any claims about the biochemistry involved). Whenever you are self-aware and something happens, if you pause for just a moment, you will realize that there are several alternative responses available to you. Even if it is simply to control the "heat" of the response by mildly increasing or decreasing the intensity of your thoughts, emotions, or behaviour, you'll see what I mean. With practice, that choice to respond by modulating intensity may build the "muscle" and eventually give way to alternate responses in kind.

There is, of course, a whole self-help literature out there about neuro-associative conditioning and neuro-linguistic programming. But what I'm really talking about here is a very simple, yet profound, realization. Cancer takes away so many of our freedoms, much in the same way that the dehumanization described by Frankl did in the concentration camps of the Second World War. But ultimately, neither brutality nor disease can erase that essential freedom each of us has to choose our attitude, our response, or merely to modulate the intensity of the response which comes instinctively.

My youngest son and I were talking today about how all his first-year arts and social science courses keep coming back to the concept of "freedom". I mentioned a course I did in my fourth year of philosophy on action and determinism that ended up being a course with just me and my professor. At the end of the year I distinctly recall becoming persuaded that agency was a fundamental precept that preserved the ideal of human freedom. I can't remember any details now, but the point is simply that when faced with one of life's cruelest diseases, there are philosophical, psychological, and experiential resources available to each of us to support the notion that cancer cannot steal our freedom away completely.

And if it is true for the end of life under extreme duress, then how more much important that we live our lives now with this principle in mind. As Frank (played by Jack Nicholson) says when another character in the movie The Departed states that someone is "on her way out", "We all are; act accordingly."

An Unwanted Journey: Day 1039 - Comfort for my Colorectal Cancer Cohort

Our numbers are growing. That's not necessarily a good thing. But it is a consequence of blogging about metastatic colorectal cancer.

I'm referring here to those who are joining me in discussing our experiences with MCRC, with treatment, with our hopes, dreams, anxieties, and laughter. In the past few weeks, I have received email and Facebook messages from others dealing with metastatic colorectal cancer themselves, some of them receiving treatment at the Grand River Regional Cancer Centre, some of them elsewhere in Canada, some of them simply commiserating with me about the ravages and blessings of a journey with cancer.

As we talk privately, I know we'll find comfort together in both the good and the bad of our situation.

Playing the Cancer Card

One thing I'm hoping to talk about with this growing cohort of co-patients and caregivers is how to play the cancer card. I think there is opportunity here for some fun. In Leroy Sievers' Celebration of Life video, for instance, there is a recorded segment in which Leroy joked about calling up a fancy restaurant in the hopes of making a last-minute reservation. When he is told that there are no openings, he wanted to say, "But I have cancer!" just to see what the response would be.

There is another similar story from Randy Pausch who talked about being pulled over by a patrolman for speeding. Randy took a chance and explained that his excuse for speeding was that he had cancer. When the patrolman said he didn't look like he was sick, Randy lifted his shirt to display the surgical scars. Whatever the patrolman was thinking, he simply put away his ticket pad and told Randy not to speed anymore.

Yesterday, I told some visitors about using the cancer card to get rid of annoying telemarketing calls and requests for donations to admittedly other good causes. "I've just been diagnosed with metastatic colorectal cancer and have to be very careful of my finances right now." True, a bit nasty, but it gets rid of the caller.

A couple days ago, my eldest son played the cancer card so that he could get a weekend off work for a planned family trip to Niagara Falls. "I need the time to spend with my father before he begins his palliative chemotherapy the following week." Smart guy! Who's going to argue with him about that?

Crying Together

But there will undoubtedly be other circumstances in which laughter gives way to tears. We will share music, photos, quotes, and blog entries that are meaningful to us. Here is just one, again from Leroy Sievers, in answer to a question many people ask us:

"Does cancer hurt? You bet. It hurts in ways that transcend physical pain. That first diagnosis is like a knife into your heart. That first bleak prognosis? That's a punch to your stomach. Waiting for the results of a scan? Water torture - slow, agonizing, excruciating. It hurts in the dark hours of the night, when you're alone with your thoughts, and you have to confront the idea of your own death. It hurts when something simple reminds you that you may not be around in six months, a year, whatever. It hurts when you think about the things you are going to miss.

But that's not the worst of it. Cancer spreads the pain around. You see it in the tears of a friend when you tell them. You see it in the eyes of your doctor who knows that in a few seconds, he has to give you bad news. You see it in the eyes of your loved ones, friends and family, who want so much to help, but can't, and who are so scared for you and scared for the loss that your death will bring.

So to answer the questions, "does cancer hurt?" I haven't felt a thing - except for when it hurts so badly you can barely stand it." - Leroy Sievers, Does Cancer Hurt? 9-18-2006

If you are a patient, a care-giver, a friend, a family member, or someone simply interested in this strange journey, feel free. Write, send a photo, a hyperlink to some good music, a video, or some thoughts. We can get through this together.

An Unwanted Journey: Day 1038 - Incurable

We picked up the long-term disability forms from the Grand River Regional Cancer Centre yesterday morning. My medical oncologist graciously agreed to fill them in, describing the treatment regimen and the overall medical context.

I knew what it would say beforehand, but reading it in black and white and with an authoritative medical signature attached was a little tough - "incurable".

As I recover from surgery and get ready for chemotherapy, that word keeps popping up, as do thoughts and images of the implications for me and my family. Sometimes, when I'm especially feeling the injustice of the situation, I turn the clock back and wonder what I might have done or others might have done to achieve a different outcome. The feelings of anguish and thoughts of what might have been are heightened by reading (on the GRRCC's homepage) that 90% of colorectal cancer is curable if found at an early stage (only 10% of those with colorectal cancer are curable if found at an advanced stage).

This week, my father underwent a colonoscopy where 4 polyps were discovered and excised, all of them benign. At 77, that's an excellent outcome, especially knowing that he doesn't need another colonoscopy until age 80. And now that I've been diagnosed, my first degree family members have the option of being tested by a colonoscopy at age 40 and older (instead of waiting until age 50 and then being tested only by a fecal occult blood test - FOBT - every 2 years). A similar situation exists for my uncle, currently being tested with a colonoscopy every 2 years, during which they usually find a polyp or 2 that is excised during the procedure.

If, if, if, if - if I had been tested with a colonoscopy at age 40 and older, we would have found the cancer at a very early stage. Even if we had tested at age 50, instead of 53, the outcome for me might be very different.

Incurable. What if. Might have been. Therein lies a kind of madness.

Instead, in my better moments, I realize that we are all incurable, terminally ill, biding time till the grave. What sets me apart these days is knowledge, knowing with the precision of a certain number of months when I will die. Sure, I will attempt to beat those odds, make the months and days keep adding up, confounding the medical statistics and even the members of my own medical team. In fact, I'll be doing everything within my power to hold on and give back.

But knowledge is not only power, it is a gift. Knowing what to expect medically in the months ahead, what I can and cannot do, what will likely work and what probably won't work - when I concentrate on those things, I feel empowered and blessed. And to some extent those who love and care for me also feel the benefits of "knowing".

Yes, it is sad. But all of us in my circle of care also know that there is some time available to us. We will find and take advantage of moments that might otherwise slip by unexploited. Those hugs, kisses, holding hands, glances of simple affection; drives in the countryside, quick day trips, visits with family and friends, coffee and lemon poppy seed loaves, sometimes a glass of wine or beer; discussions of what matters most to us, enjoying family photo albums, making new photographs - all will occur as usual but with additional poignancy and a fuller investment of time, energy, consciousness, and appreciation.

And then there are the practical aspects. I am simplifying my life. As an avid reader, I have accumulated a multitude of books over the years which, when viewed as a series of collections, documents stages and phases of my life story. But now, as I set priorities and make plans, I am donating those collections to others. This feels good. My wife and I are also looking at simplifying other aspects of our lives, getting rid of clutter and noise, and becoming reacquainted with priorities and those things that don't really matter too much. In fact, we are learning how simple many decisions can be because of that one word - incurable.

As one of my good friends would remind me, we are rediscovering balance. Because there are no longer guarantees of decades and years ahead - only months - recalibrating balance in my life has to occur and is happening. This is good.

An Unwanted Journey: Day 1036 - Global Cancer Initiative

I watched a live webcast this morning of a plenary session of the Clinton Global Initiative in New York City in which Lance Armstrong announced a new global initiative for the Lance Armstrong Foundation, beginning today. Lance noted that he will be taking another shot at professional racing, hoping in part that this will raise the visibility of the global cancer initiative.

Refuse the Stigma

Perhaps the most important feature of the global cancer initiative is the attempt to remove the stigma associated with cancer diagnosis. "You are not a victim"- words from Bill Clinton about those of us with cancer. He was talking about Lance Armstrong's impact in fighting cancer, pointing specifically to the attitude Lance has promoted among those dealing with cancer. Yes, cancer is a scourge. But what Lance teaches us is that whatever the difficulties assailing us, "We are not victims." We are survivors. We have choices to make. We have opportunities to make a difference not only for ourselves, but for our caregivers, for others dealing with cancer, and for a world at large which will soon face cancer as the number one killer (estimated by 2010).

Collaborate With Others Against Cancer

Eight million people worldwide will die from cancer this year. Twelve million will be diagnosed with cancer.

Apart from the statistics that I am personally facing, statistics like these are truly frightening. Obviously, they help people like me transcend the exigencies of our own personal difficulties. But they do illustrate the scope of the challenge before us. Still, I am inspired and grateful to those leaders like Lance Armstrong who are taking steps to deal with cancer on a global basis. At a national level, I have been hoping and waiting for the energy and enthusiasm of the Lance Armstrong Foundation to move beyond the borders of the United States. Now the initiative is underway. Now is the time for Canada to partner.

Maybe Tonight, Maybe Tomorrow

I didn't know about this song until today. But I've purchased it and downloaded it to my iTunes library. I can't think of a better song to represent the juxtaposition of personal and global concerns about cancer and the decision to live strong in the face of the threat of cancer. Here are the lyrics (from Wideawake).

Wideawake songs
Maybe Tonight, Maybe Tomorrow lyrics

An Unwanted Journey: Day 1035 - The Daily Show Stands Up To Cancer

I've mentioned recently how laughter requires giving someone a reason to laugh - the laughter itself is automatic. But there's a problem - as we all know - not everyone gets the reason. Generally, in our household, we can guarantee that when we're all gathered in the family room, eating dinner together and watching a comedy or stand-up routine, we'll all generally get the joke together. It's just so much more fun laughing with other people who share the same sense of humour and get the "reason" at the same time.

One of the shows that elicits laughter from all of us regularly is The Daily Show with Jon Stewart and his regulars. Here are a couple of videos devoted to the recent Stand Up To Cancer initiative supported by the major networks and The American Cancer Society. Warning: There is some language that might offend someone out there (not me, but it might offend you!).

Cancer deserves laughter. Those of us afflicted with cancer deserve a chance to laugh the monster down.

Thanks to a fellow patient and blogger, Christine, and her Colon Cancer Sucks Ass blog for bringing my attention to these videos. Hope you get a good laugh out of them.

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!