My Cancer Journals: Why?

I had no intention of writing a “cancer book,?or even collecting my "updates" and journal entries in one place.

While for the better part the past decade I’ve been planning on writing a book or two, the thought of letting myself be known primarily as a “cancer survivor?was an affront to my ego. I wanted to be understood as an insightful commentator on and critic of contemporary culture. I wanted to be a dissident, an activist, an advocate, an agitator. I wanted to be a voice for those without a voice, and for the growing number of believers who can easily confess their faith in and love for Jesus but who find themselves shuffling endlessly in the pew, uncomfortable with both the forms and priorities of contemporary Christendom.

I wanted to be funny, engaging and curmudgeonly.

But not once did I dream of or want to write about cancer, and risk being known as that “Cancer guy.?(It's bad enough that my wife Sheri calls me "Pharmacy Boy.")

Obviously, I’ve changed my mind.

Why? A few reasons.

Because the first rule of good writing is to “write what you know,?and damn it if coping with Multiple Myeloma doesn’t define a huge chunk of my life.

In the past three years I’ve been given a crash course in chemotherapy, stem cells, anti-pain medication, coping with broken dreams, dopey well-wishers and deceptive, opportunistic “friends in ministry.?I’ve had to redefine my goals, think intentionally about things which I’ve always taken for granted, discovered that very little we regard with reverence deserves it and what deserves it should drive us to our knees, not to a trinket store or a concert.

I’ve discovered that nurses are among the most underpaid and underappreciated people in the world. I've discovered that my best friends are exactly that. I've discovered that my family--all of it, genetic and 'in-law'--are the best. I've discovered my own capacity for ingratitude. I've discovered my wife's unending patience and that she deserves more than I can give her. And I’ve discovered that a lot of the stuff I’ve discovered other people don’t think about nearly as much as they should.

Hence, I discovered that I might as well write about it.

And, to be honest, there’s another reason I’ve decided to write about my journey with cancer, and it’s very, very simple:

Cancer books suck.

Almost all the “cancer books?I’ve stumbled across in the last two years are either whiney and pathetic or just too damned happy. About five minutes after I was diagnosed, it seemed like every other marginal friend with a library card or a Borders in their neighborhood started telling me about some book I just “had?to read.

Survivor stories. Holistic and alternative medical books. Nutritional books. More survivor stories, but with a “Jesus made me better?twist.

By six weeks after my diagnosis, I had a stack of volumes by or about cancer survivors literally a foot high (not counting the mounting pile of pamphlets, booklets and binders from my oncologists designed to give me the technical Full Monty on my disease). And, sadly, with the exception of Hamilton Jordan’s No Such Thing as a Bad Day, every one of them left me cold—or at least a little chilly.

For starters, not every person who has recently been diagnosed with a potentially fatal disease wants to sit down and read about other people who’ve nearly died from something similar. I sure as Hell didn’t. And I certainly didn’t want to sit down with a stack of them.

Further, the cumulative effect of the books, tracts, pamphlets and the seemingly endless (and rarely trustworthy) sites on the internet (this being the new millennium and all) was dreadfully and painfully overwhelming.

No, that’s not true. It was worse that that. It was paralyzing. Already up to our necks in a sea of ignorance and fear, all this information only added to the sense that I was going to drown before I learned to swim.

Thankfully our oncologist, Dr. Hoessly agreed.

While there are literally hundreds of sites designed to help patients and their families learn about and cope with cancer (some exceptionally helpful), Dr. Hoessly, encouraged us to NOT do internet research in general. Indulge your curiosity, he told us, but do so carefully, wisely and specifically.

We took the advice to heart, and worked hard to focus our reading and learning on whatever task or challenge or treatment (or proposed treatment) was at hand. We didn’t spend a lot of time researching, for example, coffee enemas in Mexican alternative medicine clinics. Nor did I concern myself too much with treatments that might be approved in six months. In fact, I didn’t concern myself with the big picture at all.

This is no small feat. You see, I’m a big picture guy. I stay up at nights worrying about theories—things like the structural causes of evil or the role of the citizenry in enforcing the Nazi’s ‘final solution?or why great songwriters suddenly suck when they become Christians and decide to make a record for the ‘Christian?music industry.

This personality trait is useful in grad school while writing your thesis, or perhaps when hired by the CIA to investigate why 18 year-old women in Palestine become suicide bombers. When faced with something important in our daily lives, however, like why the car’s gas mileage is decreasing or how to cope with an overwhelming diagnosis with an incurable disease. Spending a lot of time wondering about the structural causes of my illness—was it my grandfather who I never met who died of the disease, or my mother’s Thalidomide usage or the three summers I worked in the water filtration system of a truck rim factory—did me no good whatsoever. (Though I did consider going back to “Accuride?to meet with the union steward: “workers of the world unite!?

Sheri, on the other hand, is a detail person. She wants to know if everybody is using the same basic process and forms on a project (and she’ll invent the most efficient process and forms if they’re not, then tell you the practical implications of why), or how to best cope with the side effects of a specific treatment.. She’s amazing on stuff like that, and, obviously, we can at times function as complete opposites, and, wonder of wonders, end up complimenting each other in the process.

In this case, however, I knew if I spent too much time thinking about “big picture?stuff I’d be overwhelmed by, and perhaps get lost in it and not do so well in the (nasty) day-to-day that was to come. It became very clear to us that our natural orientations (well, at least my natural orientations) could make us crazy.

So we made a conscious and very intentional choice to go against type. I decided to purposefully not seek out information about the big picture of my disease or possible future treatments, but intenionally focus on the narrow, short-term, day-to-day aspects of my treatments (What happens when I eat an apple? What do I feel like the day after I take a walk versus the days I don’t? Stuff like that). Sheri, meanwhile, began to learn as much about the disease in general and the various, long term potential and proposed courses of treatment. She knew exactly what the plan was, and, for the first time in our relationship, I became the one who would “sweat the details.?(If you read through the Updates—especially through the chemo treatments during the summer of 2001—you will see how this plan actually worked.)

In the meantime, thanks to the good intentions of many friends, neighbors and family members, I had a growing pile of cancer books. Out of courtesy to those that had sent them my way, I began to take a crack at them.

It wasn’t pretty.

Let me be plain. There are basically three types of people who read “survivor?narratives.

First, there are people who actually have cancer (or some other disease) and their friends and relatives, and they read these books hoping that they will, in some way, either find some sense of hope or an example of some kind of coping strategy for the ordeal—and journey—ahead.

For the second group, survivor narratives that contain platitudes, pieties and pat reassurances (along with affirmations from perhaps Oprah or Billy Graham) will suffice. These folk need both catharsis and comfort, and so they read about someone’s ordeal, have a few good cries, then find some kind of motivation or reassurance that despite the apparent rip in the space/time continuum that cancer seems to make, everything will be ok with life and the universe. Maybe they know someone who is suffering. Perhaps they just want to find some kind of balance, a “there but for the grace of God?kind of comparison with whatever crap is happening in and around them. That’s fine. We cancer types are used to objectification. Whatever gets you through the night.

The third group, meanwhile, is filled with people like me who are desperately cynical or just plain lazy. While we might have moments when we are moved by sentiment and practicality, these things have little hope of taking root in our hearts. Guilt and obligation, however, these things can endure.

Now, don’t misunderstand me. We’re not opposed to sentimentality—Lord knows I’ve wished more than a few times for a long aisle to run down in order to be prayed for by a charismatic faith healer and discover the next day that I’ve been healed. But in the middle of things (and anyone who has been sick with cancer, or just as likely, sick with nasty cancer drug side effects, knows exactly what I mean by things) mere inspiration is just doesn’t cut it. We need a companion, what Jesus called a paraclete—one “called along side”—to share the journey and their shoulder, regardless of what the outcome is going to be, and it’s a rare book that offers, or even honestly points to something so rare and precious.

Lance Armstrong’s story of courage and recovery is truly inspiring, and it’s not a bad read either. But let’s be honest: it was, well, written by a guy who could ride a bike 300 miles in a day. I mean, c’mon, how much could a superhuman like that have to say to an ordinary schmuck like me? Besides, reading all the gee-whiz power of positive thinking stuff seemed a bit too triumphalistic for my tastes—at least six weeks into the chemo.

To be fair, I’m sure I was reading more into those pages than the great cyclist intended. First, I got to his very vivid descriptions of chemotherapy sickness during my own first session, and it wasn’t the kind of company I needed. And, to be honest, nor were the “suffering will make you better?pep talks I received from a couple “friends?who had read the book.

One lecture in particular was especially offensive—a colleague in ministry called to allegedly encourage me and instead managed to berate me for 20 minutes on how I shouldn’t let myself feel bad, that God would teach me stuff, that it was all about my attitude—this on a day that I had thrown up, I dunno, maybe nine times, could barely walk for the pain in my hip and, to top it off, I had recently learned that this “encourager?was working behind my back to undo some of the most substantial work I had accomplished in the past several months. While this guy might have been trying to offer genuine encouragement, the only response he was eliciting from me was a simple phrase:

“Bite me.?

Armstrong’s fine work remains unfinished, and I’m sure it’s a far better book than my reading of it suggested. At least he’s still on the shelf. That can’t be said for most of the others. (read: garbage can.)

A few reads, including a few dreadfully “practical?guides to nutrition and health, were instructive but terminally mundane. And, again, that’s not so great a word to feel percolating up in your brain during chemo for incurable cancer.

There were a couple of other well-meaning and relatively level-headed “Christian?cancer-survivor narratives that were ultimately unreadable. Maybe it was my exhausted state—I was frequently too tired to read much more than the daily comics—but when I tried to read these books, I found myself resenting them.

Were their answers too easy? Sometimes. A few well-meaning souls managed to give me “Word-faith?books whose theology was essentially this: it’s not God’s will for anyone to be sick, so if you are than either (a) there is sin in your life or (b) you aren’t “believing?enough. For now, at least, let’s just say we through those books away.

But even some of the Christian books that attempted to deal with the “tough?issues (and tougher answers) seemed trite and dismissive, written like there was a kind of self-censor staring over the writer’s shoulder to keep them from saying too much. I remember thinking as I lay in my hospital bed or my couch with these books that there had to be more going on in the lives and struggles of these narrators than they were letting us in on. I felt protected by their narratives —psychologically and spiritually coddled—at a time in my life when I needed the opposite, when I wanted straight-forward, brutal honesty.

People had given me books about cancer because they thought me needy, and they were right. I was as desperate as I had ever been. But I felt little of that need, of that desperation in these books in these books, and it offended me.

There’s a type of person whose telling of a joke is technically correct—the punch line is delivered perfectly—but because they telegraph that punch line from the moment the they begin telling the joke by the time you get to the payoff there’s nothing—absolutely nothing—left to make you laugh. In fact, with these joke-tellers, because they’ve given the joke away you end up resenting the punch line—and the joke teller too.

That’s how I responded to these books. The narratives seemed to have been written with the “happy ending?always in sight, thus making them a bit like a joke badly told. The writers were so anxious for me to get the point of their journey that they ended up demeaning the journey—the necessary journey—with all its accompanying pain, joy, fears, expletives, hopes, tears and nagging, awful, dreadful questions of life, death, grace and meaning.

What I needed was not simply reassurance, but resonance. I was desperate for someone with whom I could share my fear, frustration, doubt, incredulity, indignity as well as my hope, faith and dreams. In short, I needed a companion for my journey, not reassurance that my journey would end, and end well. (As much as I might have wanted that particular punch line, I am smart enough to know that not everyone gets it.)

I got the distinct impression from these books that they were afraid a too-prolonged discussion of weakness might lead to my disillusionment, and I might not hang around for the “good stuff?at the end. It was a miscalculation of worst kind, first because by the time I had a couple strangers stick a hollow biopsy needle in my hip a couple of times I had no illusions about my life, and second because their approach made me stop reading anyway.

You see, the sanitization of their journeys ended up demeaning the “message?that these writers were trying to convey. By neutering the journey, they made any lessons they might have had for me less relevant, and lessened their impact.

And so I began to wish for a brutally honest partner in my journey through cancer that clung to faith, hope and love, but didn’t insist we read the last chapter first.

In the meantime, however, I started an Email mailing list of friends and trusted associates to whom I sent little updates and desperate prayer requests.

It started harmlessly enough. The day after my diagnosis, I was wondering what I should do and who I should tell. I remember thinking “you know, I’m tempted to not tell anybody or ask for prayer for a while until we know what’s going on.?

Almost the moment those words were formed in my head, I remember fixating on their theological nature.

I was tempted.

That moment of reflection was all I needed: I decided then and there to never not ask people to pray for me. I mean, what harm could it do? Would the coming week of tests reveal the doctors had all made a big mistake and render the prayers of my friends moot? Who cared? If they prayed for me for naught, all of us were still the better for it—or at least certainly not hurt. And as for this notion that I might be embarrassed by a misdiagnosis, well, that was the stupidest thing to cross my brain in ages. There was nothing to lose.

And so I decided to request prayer. I went through my Outlook address book and made a list of everyone I trusted—even if I knew they weren’t religious—and sent out the first memo, simply asking them to pray for us. A few days later I sent out another one. And then another. During my treatments, I found myself taking comfort in the notion that I could talk about the process I was going through with this group of friends. Surprisingly, however, I realized that without intending to I was creating a kind of “formal?record not only of my cancer experience, but I was thinking of the list as my “audience?as well; that this might be a chance for me to do something for them as well as them doing something for me.

And then something odd started to happen. These little updates started making the rounds. Unbeknownst to me, people were forwarding them around, to their friends and lists, even posting them on websites. I started getting emails from people—both old friends/acquaintances and strangers, asking to be added to my list. By the end of my first month of treatment, my “update?list had grown to nearly 250, and I was sending notes to them about every 10 days. By the end of the second month, the list was at 350 and it was more like a “weekly?update. One friend, in a mildly successful rock band, was putting my updates on his website, while another was releasing them on his small, funny, snarky little news service. We estimated that by the middle of the summer about 3000 people were receiving my little chronicles of life with cancer. I received notes and cards from Europe, Africa and Austrailia, old friends from high school and college called or wrote, total strangers dropped me emails sharing their own stories of fear and faith, recovery and suffering, and most overwhelmingly, a man in prison wrote me a card telling me that he and his Bible study group behind bars were praying for “my freedom.?It was overwhelming. The volume of it, as I waited for what seemed an eternity for the emails to load on my computer, was at times annoying, but it was still, very, very cool.

I had, clearly but quite unexpectedly, hit a nerve.

More importantly, something was going on in me as well. For the 15 years before I became sick, I’d been busy at work trying to become a “leading voice?on the fringes of faith. Out of both a definite sense of calling, a growing sense of spiritual restlessness, a fair understanding of my gifts and perhaps a wee bit of hubris, I set myself to make some kind of an impact on contemporary culture, and more specifically, contemporary North American Christian culture. I had worked in one of Canada’s largest churches, helped invent a national magazine, schmoozed celebrities for Habitat for Humanity and finally had become Executive Director of what was essentially an urban ministry incubator. Yet now, in the midst of my weakest and most vulnerable time, my best gifts and strengths and possibly my future rendered pretty much silent by the sickness and its accompanying treatments, I found myself, ironically, feeling as useful as I had ever been.

And so it became more and more clear that these little snippets of life with cancer needed to be shaped into something that might become what I had hoped for in the books I tried to read.

What follows is that attempt to be encouraging without being Pollyannaish, to be truthful without succumbing to fearfulness, to be honest to my experience and to my hope.

If you are sick when you read this, and can’t bring yourself to finish, blame me, not yourself. And if you are not sick, consider yourself my primary audience. These musings were always meant for you.

(The entries that follow are largely without edits, in order to give you the feel of receiving them from me at the time, and in the frame of mind, that they were sent.)

(Oh, and if you've got lots of time, I'd recommend starting at the beginning.... I'll also be adding some commentary/notes between the "updates" as time permits.)

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