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.