July 10, 2016 — Living Beyond

Last December, I wrote a blog entry acknowledging the tenth anniversary of my first cancer diagnosis. I dared to hope it could be a sort of capstone for this meandering project. Maybe I was finally out of the woods. Maybe ten years meant I was “cancer-free.”                                    
Recent events have proven otherwise. My December annual visit to Dr. Stephanie Fish, my endocrinologist at Memorial Sloan-Kettering, turned up some abnormalities in an ultrasound of my neck. Several tiny nodules had appeared in my thyroid bed — the area where the thyroid gland had once been — that looked worrisome.  Dr. Fish reassured me that it was too early to tell if this was significant, but arranged for me to come back for another ultrasound in six months.

I’ve now had that follow-up test. Dr. Fish informed me there are unmistakable “signs of disease” in the thyroid bed, as well as some swelling of nearby lymph nodes. The usual treatment for recurrent thyroid cancer, she explained, is further surgery. Because I already had a routine follow-up scheduled with Dr. Jay Boyle — my thyroid surgeon — she told me I should ask him what treatment options he recommends.

Last week, Claire and I drove up to the Memorial Sloan-Kettering satellite clinic in Basking Ridge, New Jersey to see Dr. Boyle. He confirmed everything Dr. Fish had told me. The thyroid cancer is back. The truth is, it probably never left me. He’d warned me back then that it’s difficult to surgically remove every microscopic bit of thyroid tissue. That’s the reason for the radioactive iodine treatment I’d had at the time: it’s a precautionary cleanup of the whole area. But it’s not always 100% effective.

As for the lymph-node involvement, he told me that was visible even at the time of my surgery, but is of no greater concern than the newly-appeared nodules.

Well, what’s ahead? A biopsy?

The nodules are too small to biopsy.

A further radioactive iodine treatment?

Not likely. That’s a one-time approach, much less effective on the second go-round.

What about further surgery?

The nodules, he explained, are still very tiny and are therefore hard to remove surgically. They’re also located in an inconvenient place, close to the nerve that controls my vocal cords. If I opt for surgery, there’s a 10% chance of permanent hoarseness as a side-effect. Dr. Boyle knows as well as I do that I make my living with my voice.           

As for the lymph nodes on the left side of my neck, they’re closer to the skin and therefore easier to remove, but that would require a large incision that would do damage to delicate neck tissue. Such an incision would make further surgery in that area — should it ever be required, down the road — problematic.

Better to postpone surgery, he advised. Thyroid cancer is typically slow-moving. At 59 years of age, I just may outlive it. If I do reach the point where surgery is indicated, it would be just as effective then as it would be now.

The treatment Dr. Boyle recommends is one that’s become familiar to me as a non-Hodgkin lymphoma survivor: watchful waiting. Dr. Fish has already ordered a follow-up ultrasound for six months from now. Dr. Boyle thinks that’s an appropriate precautionary step, but he doesn’t expect to see a big change.

A short while after our visit to Dr. Boyle, I had a conversation with a friend who’s a breast cancer survivor. She’s had a long series of surgeries and treatments. She, too, is not in any immediate danger, but her scans have revealed some recurrent disease.

My friend told me she’s stopped updating friends and family about every detail of her situation, because it’s hard for others to grasp what watchful waiting really means. “We’ll always have cancer,” she told me, frankly. “People who haven’t lived through it have a hard time understanding that. They don’t understand that the most aggressive treatment isn’t always the best choice.”

My situation exactly.

Recently I read a little article in Cure magazine by Mike Verano, a psychotherapist and cancer survivor. It’s called "Moving On After Cancer." Mike’s point is that few people are ever able to move on after cancer, to attain the much-heralded “closure.” Most cancers are simply not that sort of disease.

Mike has this to say:

“Thirty-plus years into the practice of psychotherapy, I’ve learned that telling someone that their recovery depends on ‘moving on’ is akin to telling a depressed person to just ‘be happy.’ My approach these days is to talk about living with rather than living without, allowing over forcing and, most importantly, realizing that life moves on in wellness and illness, joy and suffering, pleasure and pain. I firmly believe that illness does not halt this process; it does not put the brakes on existence. Feeling stuck comes from a trick of the mind that sees suffering, of any kind, as an unnecessary detour and waste of time.

Once we allow our lives to unfold with cancer as part of our experience, we awaken to the literal meaning of the word survive which is ‘to live beyond.’ This is the wisdom of being told that we become survivors on the day we receive our diagnosis. Thus, the need to discover the way ahead, to put psychological, emotional and spiritual distance between ourselves and the illness is already being met. Therefore, the work is often a matter of staying out of our own way as we move through this process.”

Survival as “living beyond”: I like that insight. It sounds positively theological. Jesus Christ says he has come that we “may have life, and have it abundantly.” It’s so very easy for us to ascribe to cancer the power to make this God-given life less abundant than it already is. Cancer has no such power.

We watch. We wait. We live. We love. We have cancer.

We live beyond.

November 10, 2015 - Virtue of Omission

Breast-cancer survivor Khevan Barnes describes, in an article published today in Cure magazine online, his unique outlook on being in remission:

“As I continue to find ways to live alongside my cancer, I am reminded of two things. Firstly, I am not in a battle with my disease. I am a conscientious objector. Cancer exists, and it may very well be present in my body, but I do not support it, either morally or spiritually. And secondly I am not in remission, I am in omission. No matter what the tests show, I categorically reject the notion of cancer diminishing my life experience.” (“An Existence Beyond Cancer,” November 10, 2015)

Hmmm... cancer survivors in omission. It’s got a ring to it. Barnes is calling on us survivors to strive to omit cancer from our lives — meaning an intentional decision on our part not to let it dominate our thinking.

The canon lawyers warn of sins of omission. Well, in this case, omission is a virtue.

The theologian Soren Kierkegaard is famous for saying,  “Life can only be understood backwards, but it must be lived forwards.” I think Barnes is echoing that thought. Yes, we survivors need to look back, and often, as we continue to make sense of our experience. For better or for worse, our cancer has made us who we are today. None of us asked for that formative struggle. It came to us unbidden. We would have run from it if we could.

Yet, cancer need not continue to call the shots in our lives. Yes, many of us are in remission — or, as Barnes prefers to say, in omission. Remembering what has gone before, and honoring that memory, we tell it to go back into its hole and allow us to live into God’s future.

January 9, 2014 — Who Am I?

Today I read an article by my friend and seminary classmate Kathleen Long Bostrom (“Identity Crisis,” Horizons, The Magazine for Presbyterian Women, January/February 2014). It speaks to where I am right now, in these days of recovery.

Kathy’s writing about what it feels like to take early retirement, for medical reasons. (She’s been dealing with a chronic obstructive lung disease for some years now.) Kathy had been serving as a co-pastor alongside her husband, Greg Bostrom. He continues in the pastoral role, in the same church. She’s now devoting her attention to her part-time writing career (she’s an acclaimed author of religious children’s books).

In my case, no one’s talking about retirement. The breathing difficulties caused by my matched pair of pulmonary emboli are expected to diminish in time. I fully expect to return to full-time pastoral work when that happens — but for now, I’m on temporary disability from my work at the church. With the three hospitalizations I’ve had this fall and winter (the most recent ending on December 28), I’ve had a few setbacks of the two-steps-forward-one-step-back variety.

Back in 2006, when I was receiving chemotherapy for non-Hodgkin lymphoma, I was also dealing with a kind of disability. But, that was different. With a once-every-3-weeks chemo cycle, I could anticipate one week of being out sick, a second week of moderate energy, and a third week of relatively normal functioning. I never did go on full-time disability.

It’s different this time. The blood clots in my lungs restrict my breathing, meaning I get winded very easily — even after the relatively minor effort of climbing a flight of stairs. I’m making progress with my outpatient physical therapy, but it’s slow (especially since each hospitalization has led to some deconditioning, setting me back a few spaces on the recovery gameboard each time).

The nature of pastoral ministry is such that it’s hard to step back from full-time to part-time. As far as the congregation is concerned, you’re either back or you’re not. I’ve received advice from numerous people not to attempt part-time ministry. It’s hard to set reasonable limits. It’s easy for a task-oriented person like me to overwork. Also, the congregation tends to think that, if they see you up in front, leading worship, many will assume that you’re back 100%, even if you’re not.

I asked my pulmonologist, Dr. Gustavo De La Luz, how long it will be before the emboli dissolve, and he said the average is 3 months. I’m coming up on that date at the end of this month, and I have noticed some modest improvement. The last scan I had at the hospital showed one embolism has gotten smaller.  But I’ve also had unusual complications: the big internal bleed I had during my first hospitalization, and two incidents of temporary kidney failure, caused by the CT-scan contrast dye (which my body can evidently no longer tolerate).

The result is that my disability is frustratingly open-ended. No one can predict with any accuracy when I’ll be ready to return to my pastoral duties. Recently, I’ve been advised to fill out the Presbyterian Board of Pensions’ disability paperwork, so that — if I’m still sidelined when I hit the 90-day anniversary of my diagnosis at the end of this month — I can begin collecting a temporary disability pension (which would save the church two-thirds of the salary they’ve graciously continued to pay me).

I learned years ago that, if there’s any advantage to receiving chemotherapy for lymphoma, it’s that the treatment’s progress is tightly regimented. With one treatment every three weeks, there was a predictable “chemo cycle” governing how sick I could be expected to feel.

Not so with this pulmonary embolism thing. The clots will dissolve when they dissolve. No one can predict how long that will take. Nor can anyone predict how fully the lungs will recover after the clots are gone. Some patients find that some of their lung tissue has become “necrotic,” after all that time deprived of oxygen from the bloodstream. That essentially dead lung tissue will never recover. No one can predict how much necrotic tissue there is, nor how it will affect my long-term recovery. The deep-vein thrombosis in my leg (for which I’m being treated with the anticoagulant, Coumadin) also bears careful watching. I’m wary of the possibility of another hematoma, even though I’m on just one anticoagulant rather than two, and I’m being carefully monitored by a hematologist (my oncologist, Dr. Lerner).

During my cancer treatments, I was able to make some modest plans around the ups and downs of the chemo cycle, that’s not possible in this case. I’m living day-to-day, pursuing a recovery of indeterminate speed and duration.

I can vividly remember the experience, on Easter Day, 2006, of looking across the street from my bedroom window, sick as a dog from my most recent chemo treatment, watching the congregation arrive for worship in all their Easter finery. It was a strangely disjointed feeling. It felt unnatural not to be there.

With my present pulmonary difficulties, that’s my experience every day.

Which brings me, at long last, to Kathy’s insightful article. She admits to feeling a certain kind of “identity crisis” as she transitions into early retirement — becoming no longer one of the church’s pastors, but merely the pastor’s wife.

“Who am I,” she writes, “now that I am no longer the pastor? Who are any of us, apart from the labels that define us, that can be cumbersome, even limiting, but that also give us a sense of identity and purpose?”

Musing on the experience of serious illness, she observes how we can “lose our intrinsic identities even further and become ‘a cancer patient,’ rather than ‘Joan, who happens to have cancer.’”

When I was in the hospital, I wore a plastic ID bracelet with my name, my birthdate and a bar code on it. Every time a nurse came in to give me medication, or a technician to draw blood or give me a breathing treatment, I would be asked to repeat my name and birthdate, so the hospital employee could check that information against my bracelet. Then, the person would scan my barcode with a little handheld device. This was for medical-records purposes, but I was also aware that it was related to the hospital’s billing process. It was the medical equivalent of waving a box of Cheerios over the bar-code scanner at the supermarket checkout. Every pill I swallowed, every new bag of IV saline solution, had its price.

In the hospital, the uniformity of my hospital gown and the ubiquitous presence of my ID bracelet proclaimed that my identity, as a patient, was pretty much limited to my medical condition. Pastor, husband, father, friend — all those roles diminished to secondary importance. Name, birthdate, barcode: those were my new identifiers.

Now that I’m home, and my main activity is getting better, it still doesn’t feel all that different. Many of those things I used to do, by which I defined myself, aren't part of my life at the moment. Even with family relationships, things have changed. I no longer do many of the things I’m used to doing as husband and father. Others must do some of those things for me.

Kathy quotes a little poem by theologian and martyr Dietrich Bonhoeffer, “Who Am I?”, which concludes with these words:

Who am I? They mock me, these lonely questions of mine.
Whoever I am, thou knowest, O God, I am thine.

Kathy then goes on to observe: “I am who I have been from the very beginning: I am a child of God. That has never changed. It is who I will always be, even though that identity has gotten lost in the shuffle of my labels. First and foremost, now and always, I am a child of God, which is what we all are, no matter the labels that have stuck to us over the years.”

Maybe that’s the lesson God is teaching me, through this protracted recovery. Ministering to the dying and their families, I've experienced the truth of the old cliché: “No one ever says, on their deathbed, ‘I wish I’d spent more time at the office.’” We're not defined by what we do, but by who God has created us to be.

Kathy’s right. At the end of the day, “child of God” is what we are. All of us.

June 29, 2013 - "Time, Time, Time Is on My Side, Yes It Is"

OK, this is really good news. A study of the survival rate of follicular lymphoma patients is showing a significant and steadily growing improvement since the 1960s.

The study results are published in an article, “Improvements in observed and relative survival in follicular grade 1-2 lymphoma over four decades: The Stanford University experience,” in Blood, June 18, 2013.

I don’t have follicular lymphoma — the small cells in my “B-cell, diffuse mixed large and small cell” grading evidently don’t display the same shape under a microscope as do follicular cells — but both are small-cell indolent lymphomas, treated more-or-less the same way. So, I take this good news to apply to my situation as well.

I’ve known this for years — that survival rates are getting better and better, as new treatments are steadily being rolled out — but it’s good to see some actual numbers, as part of a long-term historical study.

The study conducted at Stanford University identifies four historical eras:

Era 1, pre-anthracycline (1960-1975)
Era 2, anthracycline (1976-1986)
Era 3, aggressive chemotherapy/purine analogs (1987-1996)
Era 4, rituximab (1997-2003)

I’m off the chart in this study — a member of Era 5 — because I received my R-CHOP chemo (three chemo agents including anthracycline, plus the steroid prednisone, plus rituximab) in early 2006. So, my odds ought to be as good as, and probably better than, the era-4 patients.

Median overall survival rate steadily improved from approximately 11 years in eras 1 and 2 to 18.4 years in era 3. It’s not yet been reached for era 4 — because too many people in that cohort are still alive for researchers to have established their median age at death.

OK, so pre-rituximab follicular lymphoma patients are surviving for an average of 18.4 years after treatment. Rituximab-era patients up through 2003 are presumably doing much better than that (although the researchers can’t say, yet, by how much, because the numbers still aren’t in). I’m in the 15-year cohort beyond even that, that still hasn’t closed.

Even if the Era 4 numbers were to surprise everyone and reflect only a very modest gain (say, a 20-year average overall survival rate), that would peg the typical life expectancy of people who were treated at age 49, as I was, at age 69. Yet, because of the revolutionary impact of rituximab, the Era 4 group’s survival rate will likely prove to be much higher than that.

The news gets better. I’m not in Era 4. I’m in the yet-to-be-studied Era 5. Projecting the Stanford researchers’ steady increase into the future, that would push the average overall survival rate for patients from my era higher still.

I’m aware that I’m basing this speculation on the abstract, rather than the full article (which requires a subscription to the journal, Blood, to read online). I’m also aware that, once we get out of Era 3 (the latest one for which an actual median overall survival rate can be measured), we’re dealing in some very soft — and in the case of my Era 5 — even non-existent numbers. But, the trends look good.

“So teach us to count our days that we may gain a wise heart” (Psalm 90:12). I’m pretty sure the psalmist is talking about remaining aware of just how soon one’s own death may be coming. Does numbering our days in the opposite direction make us less wise?

I don’t know, and I don't much care. I’ll take the good news, all the same.

April 12, 2013 — In the Gray Area

From time to time, I take advantage of educational conference-call opportunities that are made available by some of the leading cancer research and patient-support organizations. This afternoon, I listened to one that featured Dr. Owen O’Connor of Columbia University and Dr. Bruce Cheson of Georgetown University, both of them lymphoma specialists.

I’ve heard Dr. Cheson numerous times in the past (that's him to the left). Dr. O’Connor was a new name to me (see below for his photo).

The program was sponsored by CancerCare.org.

Often, my chief take-away after listening to such programs is to feel reassured that I’m pretty much on top of the subject of recent advances in lymphoma treatments. That, in itself, is encouraging.

Today, though, I actually heard a few things I hadn’t heard before. Or, if I did hear them before, they didn’t register with me.

The first has to do with the vexed question of what sub-type of NHL I actually have. My initial diagnosis was for small B-cell lymphoma, which is usually understood to be an indolent form of the disease (as is the relatively common follicular lymphoma). My second-opinion from a pathologist at Memorial Sloan-Kettering in New York, however, identified a significant number of large cells (more dangerous, but also more susceptible to curative treatment), which set me out on the chemotherapy journey on which I embarked in early 2006. The new diagnosis at the time was “diffuse mixed large and small B-cell.”

As a result, when I attend lymphoma educational conferences where they ask participants with B-cell NHL to break out into workshop groups, some follicular and others large B-cell, I never quite know where to go.

Today I heard Dr. O’Connor speak of the fact that, when it comes to diagnosis, there is often a significant gray area between high-grade (somewhat more aggressive) follicular lymphoma and diffuse large B-cell. He also said there are well-documented examples of “histologic transformation of follicular lymphoma,” which means that a patient’s disease actually changes fro one form to another.

I’m not saying that happened to me, necessarily. It’s just that it highlights how the pathology reports that doctors often present to patients with such certainty are sometimes as much an art as a science.  Dr. O’Connor pointed out that, in the case of some patients, if you were to present the same pathology report to ten different pathologists, as many as three or four of them may differ from the others with respect to grading of the disease.

That would put me squarely in the gray area, it would seem. It also means I’m likely always to have difficulty deciding which workshop group to join.

Generally, the news continues to be encouraging. Both doctors emphasized that, in the world of B-cell lymphoma, there are a great many treatments to choose from in the event of relapse. Here’s hoping I’ll never need them, but in case I do someday, it’s good to know there’s a choice.

They also made me feel like the R-CHOP treatment — harsh as it was — was, indeed, the most appropriate choice for me at the time. One of the callers in the question-and-answer session was wondering whether it’s best for a newly-diagnosed follicular lymphoma patient to start off with Rituxan only, rather than more traditional chemo agents. Dr. Cheson was quite clear that, the younger the patient is, the more important it is — all things being equal — to start with the harsher treatment first. Not only are the benefits likely to be longer-lasting with traditional chemo, but older patients are more likely to have difficulty tolerating it. So, it’s better to use it while you can, as a primary rather than a refractory treatment, while you’re relatively young.

I’ve often wondered, as well — especially as I speak to other patients whose disease is quiescent and who are pursuing long-term maintenance Rituxan treatments — whether watchful waiting continues to be the best course of action. Dr. Cheson put my mind at ease in that regard, by repeating news of some research studies I’ve already heard about. Specifically, these studies have found that, while maintenance Rituxan treatments may cause longer remissions, when everything is said and done, the overall survival rates of those who have had these monthly IV drips is no better than those who have not.

Anyway, it was a productive and reassuring hour to spend — even considering the ambiguity that goes along with living in the gray area. Thanks to the good folks at CancerCare for putting on such a useful program!

July 11, 2012 – Would You Want to Know?

An article in the July 9 New York Times (Gina Kolata, “A Life-Death Predictor Adds to a Cancer’s Strain”) lays out a grim but philosophically-fascinating scenario.

Imagine you have advanced cancer of the eye. If the tumor has grown large, you’ll very likely lose the eye, which is bad enough – but that’s not all.  A new option for genetic testing of your tumor reveals, with a very high degree of accuracy, which of two subtypes of ocular melanoma you have. Half of all patients have the first type, and are likely to recover completely. Those unfortunate ones who fall into the other half face a 70-80% likelihood they’ll be dead in five years, from metastases to the liver.  This second type of eye cancer is incurable.

According to the Times article, there’s some debate in the medical community over whether doctors ought to offer this testing option at all.  Most patients, it seems, have said they would rather not know if they have an incurable disease. And for those who do, learning of the incurable nature of their disorder – so soon after the initial diagnosis – could very well send them into an emotional tailspin from which they may never recover.

“Why would you want that information when we don’t have anything we can do for you?” one oncologist asked. “That is the fundamental question that has caused people to pause.”

It’s not that the test is medically useless. Some doctors point out that, if they can discover the cancer as soon as it jumps to the liver, they may be able to control its spread for a while. Even after it moves on to the lungs or bones, there are further treatments that can slow its inevitable progress, buying even more time and sparing the patient some pain that would come with a faster-moving cancer.

“Would you want a horrible death that is relatively short,” one doctor asks, “or a death that is slower?”

Of course, those who agree to the test and find out they have the curable variety are much relieved, and rejoice at the good news.

I think I'd want to know.  I’d want to have as much time as possible to scratch a few more items off my bucket list.

So, what do you think?  Would you want to know?

February 13, 2012 – Link to My Past

I’ve been recovering at home for the past week, following last Monday’s surgery for benign enlargement of the prostate.  Everything went well, as predicted, and I’m on track for a full recovery.  Tomorrow I’ll venture back over to the church office, and see how things go.

Today, though, I’m thinking about an object that came into my possession recently.  A few days before my surgery, I did a Google search for the name of my father’s old business, a high-end men’s clothing store called Wilton & Woolley.  It was located on Main Street in my hometown of Toms River, New Jersey.  (The “Woolley” name belonged to a silent partner, a haberdasher from another town who had fronted him some money to start the place.)  My father, Carlos E. Wilton, Sr., operated the store for a decade or so in the late 1950s and early 1960s, before getting out of the business in the nick of time, just before Toms River’s once-vibrant Main Street was bled dry by a new shopping mall on what was then the outskirts of town.  Dad used to tell my brother Jim and me that Wilton & Woolley was our family business, that we all owned it together and that one day maybe we kids would have it for our own.

I can’t imagine being a retail merchant, myself – even if an old-fashioned haberdashery like his could have survived to be a going concern today.  Yet, that’s the way my father used to think when we were kids, and who were we to disabuse him of the idea?

I was looking the other day for a photo of the Wilton & Woolley storefront to put on my Facebook timeline, and never did find one.  Google led me, instead, to an eBay page, where somebody was selling an old printer’s block with the Wilton & Woolley name on it.

It was a strange feeling to run across that item.  It felt vaguely wrong to see it there, like it was a piece of my family heritage on the auction block.

In fact, this hunk of wood and metal had never been owned by anyone in my family.  Back before the days of computer graphics, print shops would create metal plates they would insert into a rack beside similar blocks, along with a whole lot of the moveable type that was then their stock in trade.  Then, they would slather ink onto the whole assemblage, and run as many copies of the letterhead, handbill or brochure as might be needed.  Once the job was finished, printers would save blocks like this one to reuse in the future.  In fact, on the bottom of the piece of wood is the name and address of the long-shuttered print shop – evidently one my father patronized for advertising.  The store name appears in the jaunty, 1950s typeface he always used, the closest thing Wilton & Woolley ever had to a logo.

I felt like I had to have the thing, without knowing exactly why.  I’ve got no place to display it, no real use for it.  God knows we’ve already got way too much bric-a-brac in the house.  Yet, for 15 bucks I figured I could afford to free it from the auction block, so I did.

It arrived in the mail just after I got home from the hospital.  With its wood-block backing, it’s about 5 inches long. It’s hefty, substantial, reassuring to hold.  The wood still bears an ancient smear of black ink. To me, it feels like a link to my past.

I’ve got a few small items associated with my father, but not much.  Sadly, his life contracted in his later years, as he fell victim to years of substance abuse – alcohol and tobacco, the drugs of choice of his generation – and what was, very likely, undiagnosed clinical depression. After selling the store, he hit the road as a traveling salesman, first selling school library books for major publishers and, later, law books.  When he was motivated, Dad won all the sales awards.  Yet, inevitably, he’d grow tired of the grind.  He would slack off on the sales calls, get into some kind of argument with the bosses and they would part ways.   He jumped from one publisher to another in that way, every few years.  After he and my mother divorced, he switched to selling life insurance.  Abruptly, Dad moved clear across the country to the Central Valley of California, where he’d grown up, intending to start afresh in the life-insurance business out there.

My father ended his working life as a night clerk in a convenience store called the “Git-n-Go” (photo is not of his store).  By that stage of his life, he amiably settled for enough money to pay the rent and keep him in booze and cigarettes.  It didn’t seem to faze him when the store was robbed, twice, on his shift – once at knifepoint, giving him a little scar on his neck where the knife-tip had broken the skin.  He never even told us when these things happened.  We learned about them only years later.  Not a big one for communication, was my Dad.

After he almost died from a dissecting aortic aneurysm – that led to an air-ambulance helicopter flight to Stanford University Hospital for herculean surgery to give him a new aorta – he moved back east to Newton, Massachusetts, to an apartment down the street from my brother, Jim.  Dad had finally quit smoking by then – a month in ICU on a ventilator will do that to you – and there he lived the last year or so of his life, subsisting on two or three six-packs of Budweiser a day, because he figured it was better for him than the Canadian whiskey (and, later, vodka) he’d formerly favored.

Nothing of what my father did in his working life left any sort of legacy.  He always had the misfortune to find himself on the downward slope of major economic change, but did manage to bail out in time before the wave crashed.  First, the 1960s blue-jeans era reduced the market for “Mad Men” tailored suits and fedora hats.  Then, the advent of the shopping mall did away with most Main Street family businesses of any kind.  Dad did well in the book business for a few years, but was fortunate to jump ship before the Internet changed that world forever.  By then, I suppose he was feeling burned-out as a salesman, but it was all he knew how to do.  Life insurance was never a good fit for him.

I’ve only seen Arthur Miller’s “Death of a Salesman” once in my life, but I know I could never bring myself to do so again.  That grim drama’s just too close to home.

The printer’s block in my hand feels like a sort of legacy.  It’s solid and substantial, concrete evidence of a nearly-forgotten family business my father hoped and dreamed would outlast him.  Maybe he imagined that, in time, he would buy Mr. Woolley out, and he’d rename it “Wilton & Sons.”

At age 55, I’ve reached the stage of life where I’m thinking about my own legacy.  A couple of cancer experiences have pressed such ruminations upon me a bit earlier than most, and this recent surgery and slow recovery have reminded me once again that, as that spoilsport Isaiah puts it, “all people are grass, their constancy is like the flower of the field.” (Isaiah 40:6)

Myself included, of course.  Parish ministry is notorious, even in the best of times, for its abstract, hard-to-categorize results.  In this profoundly confused era, we who pastor mainline Protestant churches are all too often reminded that we’re serving a shrinking, aging market.  I’ve grown quite tired of reading articles in professional journals that include the familiar Cassandra-words: “If present trends continue...”

What will my children hold in their hands, one day, that reminds them of me, of my years of toil in the vineyard of the Lord?  A Bible, a calling card, a tarnished home-communion set, a disintegrating copy of one of the pulpit-helps books I’ve written?  As my books go out of print, much of what I’ve created, in the form of writings, lives now on the Internet: sermons once voiced in their time, but which now persist only as ghostly electrical impulses, mere droplets in a vast and ever-expanding sea.  As the church continues to lurch through rapid societal change, I wonder: will my grandchildren yet unborn even know what a sermon is – homely, spoken words of testimony, unadorned by electronic finery?

Ultimately, I suppose, my legacy is my children – as my brothers Jim, Dave and I are my father’s legacy.  After more than 20 years of ministry in one church, and 6 years before that of guiding others into ministry as a seminary assistant dean and admissions director, there’s also another group of people that are my legacy.  Those, of course, are the other lives out there I’ve touched, and – I hope, on my best days – influenced for the better.  Sure, a great many of the babies I’ve held in my arms at the baptismal font have drifted away from the church in adulthood, but not all.  In a time of convalescence such as I’m now going through, the many cards, emails and other caring communications I’ve received remind me that what I do continues to be appreciated.

“O that my words were written down! O that they were inscribed in a book! O that with an iron pen and with lead they were engraved on a rock forever!  For I know that my Redeemer lives, and that at the last he will stand upon the earth...” (Job 19:23-25).  For any of us, our true legacy is no block of wood with lead type fixed upon it.  It’s flesh and blood.  As it was for my father, it will one day be true for me.  Soli Deo Gloria.

June 5, 2011 – An AIDS Survivor’s Testimony

There’s a thought-provoking op-ed essay in today’s New York Times, written by a man who’s been living with AIDS since the early days of that epidemic (Mark Trautwein, “The Death Sentence That Defined My Life”). While there are many dissimilarities between HIV-AIDS survivors and cancer survivors – most notably the horrible stigma and irrational fears that still lurk around HIV-AIDS, and which were especially intense in the early days – there are also some notable similarities.

At one point, Mark Trautwein and his partner, both infected with AIDS, actually packed up and moved to a new home closer to Mark’s family, because they were convinced both were not long for this world and they would need someone to care for them in their last days. Then, the protease inhibitor class of AIDS drugs came out, and everything changed. Suddenly, their looming deaths were pushed back from “soon” to “sometime.”

With the medications that are now available, AIDS – while still a dread disease – has become transformed from a sentence of certain death to something more akin to the “incurable but treatable” NHL that I have.

I’d be very cautious, myself, in drawing any parallels between my story and that of someone struggling to stay healthy with AIDS – especially someone like Mark, who lived through those dark years when no one even knew what this new “plague” was, nor what could be done about it, short of quarantining everyone who had it – but I did have to nod with recognition at what he says he’s learned from looking death in the eye:

“For 15 years, death had been ever present. I'd thought about it daily, got familiar with it and planned around it. It had amazed me that people could walk around every day as if they were immune to it. Now I had to adjust to a life I'd been schooled to believe I'd never have. It was one of the hardest and most welcome things I've ever had to do.”

Even though, at the time of my diagnosis, my objective chances of survival with NHL were far, far better than those of the early AIDS patients, I still went through a major phase of asking all sorts of “what if” questions about my own death – some of them weighty and philosophical, others trivial and even silly. What if this is my last year on earth? What does it mean to “get your affairs in order”? How does one know when it’s time to do that? Is it worthwhile springing for that new crown the dentist says I need?

At mid-life, I’d scarcely begun to absorb the fact that I’m going to die someday – not so much an intellectual realization as an existentially, gut-level one. Suddenly, the thought was with me constantly. I felt like I’d been sleepwalking for years – and, like Mark, I looked around at all the healthy people and wondered how they could be so oblivious to it all. “Why waste your time watching reality shows, people?” I wanted to shout. “Don’t you know your own reality is precious, and of limited duration?” (Thankfully, I kept my mouth shut. I could have been a real downer at dinner parties.)

Aware of my own “incurable but treatable” NHL diagnosis, I was curious to read of Mark’s perspective after 30 years of living with his own:

“My relationship with AIDS is one of my most enduring ones, and has both enriched and beggared my life. It robbed me of friends and loved ones, and with them memories we would have had and repositories of my own history. It ended a career I loved. It cost me a marriage. My intimacy with health care in America has been costly and exhausting. I know these are small prices to pay for life.

What I've gained is precious. Above all, the constant companionship of plague has taught me that life is about living, not cheating death. Fighting disease is required and struggling with life inevitable. But I accept the outcomes now, whatever they are. My disease does not make me special, nor does my survival make me courageous.

On that day I walked from the hospital knowing I had "it," I was given a great gift: the realization that we all dangle from that most delicate of threads and that the only way to live a life is to love it.

I haven't died on schedule, and I've been learning not to live life on one either.”

I don’t swallow 25 pills a day for my immune-system disorder, as Mark does for his. Nor do I have to worry about lingering social stigma. My daily road is still far easier than his. After more than 5 years of watch-and-wait monitoring – and even a recent PET scan that showed no potential lymphoma “hot spots” at all, though it’s surely still there – I’m even beginning to wonder if I’m losing the keenly introspective, philosophical edge I had back in my chemo days. Back then I felt lousy, physically, but in terms of spiritual discernment I felt like I was near the top of my game.

I hope I still love this God-given life as much as I did then. Yet, I’m also realizing how easy it could be to fall back into the poppyfields and go back to my blissful, pre-cancer slumber.

Cancer’s lessons are hard-earned. I hope I don’t lose them.

An "N" of 1

I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:

"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."

That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.

I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.

I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.

"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)

That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.

He intuitively understood what President Faust is talking about. He knew he was an "N of 1."

The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."

According to "N of 1" thinking, that's OK, too.

Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.

It's the art of living.

"If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast."

- Psalm 139:9-10

December 27, 2010 - Putting the "Death Panel" Myth to Rest

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

December 2, 2010 – 5-Year Cancerversary

Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.

So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.

Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.

My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.

Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.

In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.

So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.

Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.

There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.

June 6, 2010 - Our Most Elusive Possession

Great column a couple days ago, from New York Times columnist Nicholas Kristof. Instead of gallivanting around Africa or someplace crusading against injustice, as he often is, his June 4th column is very personal.

That’s because he’s had a cancer scare: diagnosis of a kidney tumor 90% likely to be malignant, then surgery – and then, against the odds, a biopsy revealing he’s in the lucky 10%. The tumor was benign.

Still – and understandably – Nicholas had a scare, that led him (as cancer has led so many of us) to examine his life a little more closely. Here’s the result:

“This is trite but also so, so true: A brush with mortality turns out to be the best way to appreciate how blue the sky is, how sensuous grass feels underfoot, how melodious kids' voices are. Even teenagers' voices. A friend and colleague, David E. Sanger, who conquered cancer a decade ago, says, "No matter how bad a day you're having, you say to yourself: `I've had worse....’

I don't mean to wax lyrical about the joys of tumors. But maybe the most elusive possession is contentment with what we have. There's no better way to attain that than a glimpse of our mortality.”

Preach it, brother!

A few verses from the First Letter to Timothy come to mind:

"Of course, there is great gain in godliness combined with contentment; for we brought nothing into the world, so that we can take nothing out of it; but if we have food and clothing, we will be content with these."

- 1 Timothy 6:6-8

January 9, 2010 - Everything In Its Time

Today I run across an inspiring story on National Public Radio: the saga of one Seun Adebiyi, who has dreams of becoming – I am not making this up – Nigeria’s first contender in the Winter Olympics one-man sledding event called skeleton.

Seun (who pronounces his name “Shawn” when here in the United States) missed making the Nigerian Olympic swim team by a tenth of a second. So, he turned his attention to winter sports, setting his sights on the skeleton event. A student at Yale Law School, who was brought to this country as a child by his immigrant mother, Seun sounds very American. Yet, he does have Nigerian citizenship – which means that, as he trains 5 hours a day on the skeleton track outside Salt Lake City, he’s possibly the only Nigerian aspiring to represent his country in this event.

Seun’s circum- stances sound like those of the Jamaican bobsled team that was the subject of the 1993 Disney film, Cool Runnings – with one exception: he’s just been diagnosed with cancer.

And not just any cancer. Seun’s got two aggressive forms: stem-cell leukemia and lymphoblastic lymphoma.

The most promising treatment for him is an allogeneic stem-cell transplant, one requiring closely-matched cells from a living donor. (It’s the type of stem-cell transplant I’d need to have, should it ever come to that.)

Seun’s problem is that people of African descent aren’t well-represented in the donor registry – and for patients who are actually from Africa, the outlook is even bleaker. Still, that didn’t stop Seun and his mother from traveling to Nigeria recently to set up that country’s first bone-marrow registry.

Seun’s best chance lies in a cord-blood transplant, which he’s going to be having soon at Memorial Sloan-Kettering Cancer Center in New York City.

The online audio of NPR’s story on him is well worth the 5 minutes of your time it will take to listen to it. As NPR correspondent Mike Pesca summarizes Seun’s description of his situation, “Living with cancer is like living an extremely concentrated, extremely potent version of life.”

And how. It’s an apt description of what it feels like to go through the cancer-treatment experience.

Then, Pesca relates another thing Seun said to him: “There is a time for all-out effort, and then there’s a time for surrender.” Seun’s approach is to pull out all the stops during the weeks leading up to his transplant, training for that ordeal with the same intense effort he’s brought to his Olympic bid. Yet, he knows there will come a time when he can do nothing but trust the expertise of the Memorial Sloan-Kettering doctors and the technological wizardry they have at their disposal.

Truly, there is a time for everything in life – as I reminded a family just yesterday, at the funeral of their 104-year-old matriarch. At the funeral home, I read these beloved words from the third chapter of Ecclesiastes:

“For everything there is a season, and a time for every matter under heaven:
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance...” (Ecclesiastes 3:1-4)

On an on the ancient poem goes, weaving its way in and out of all life’s adventures. Its words sound a very different note at the funeral of a centenarian than they do on the eve of a twentysomething’s risky stem-cell transplant. Yet, the best any of us can do, regardless of our circumstances, is to trust that, in God’s providence, there is indeed a time for everything.

I’m beginning to learn, myself, that this has much less to do with the duration of life than with its quality. A long, serene run of 104 years is a beautiful thing. But then, so is a young man’s 80-mile-an-hour dash down an icy hillside in search of Olympic gold.

Either way, I believe the Lord is standing by, to guide and to bless.

November 28, 2009 - Passing the 500 Milestone

Yesterday, as I posted my most recent blog entry, I passed a milestone. It was my 500th blog entry.

It’s hard to believe. In the 4 years or so since I’ve been writing this blog, chronicling my experience as a cancer survivor, I’ve somehow found that much to say.

Early on, the blog was all about giving a blow-by-blow account of my medical treatments. Later, as I went into, then out of, remission, then entered the extended period of watchful waiting I’m presently in, I’ve had less to share about my medical condition. That’s a good thing, because no news is good news. I’ve naturally moved over into commenting on some other topics I now look on differently because I’m a cancer survivor – particularly the healthcare-funding debate in this country, and general survivorship issues.

I’d like to thank you, my readers, for hanging in there with me through all this. I plan to continue posting here as long as folks are finding the blog helpful to their own life journeys. Please do use the “Comments” feature to let me know what you’re thinking about my postings. I’m still getting 50-60 visitors a day, so I figure I must still be addressing some real needs.

Grace and peace and life abundant to all.

Carl

June 12, 2009 - Beside the Lake

It’s nearing the end of a remarkable day, for me. After breakfast and a time of worship, our retreat leaders sent us off to find a place to spend two and a half hours in quiet discernment, seeking hints to the leading of the Holy Spirit in our lives. Four days’ work have led up to this point. I have been much occupied in reflecting on various things that have led me to feel spiritually and vocationally stuck. Many of them derive, directly or indirectly, from the way lymphoma has interrupted my life.

Reflecting back, now, on that time of discernment...

I make my way along the path to a large, lakeside picnic pavilion on the conference center grounds. The place, which is evidently where they hold cookouts as well as some wedding receptions, is deserted. Walking across the wooden deck to the railing by the water’s edge, I notice something at my feet. It’s a bird’s nest, with a yellow-and white smear on the planks beside it. Evidently, some prowling carnivore swept the nest down from a rafter overhead, then devoured the frail eggs that had been nestled in it.

Saddened by nature’s carnage, I pull a folding chair to the edge of the dance floor and sit there, looking across the lake.

Skirted by rolling mist, the dark water reflects the tall trees on the opposite shore. Occasionally, a fish breaks the opaque surface. The calling of circling birds reminds me this place is teeming with life.

Taking out my journal, I begin to write a poem that records the way this scene speaks to me, in a way I can only conclude is the leading of the Spirit:

CONSIDER THE BIRDS

“Look at the birds of the air...” – Matthew 6:26

Bird’s nest
cast on the wooden planks of a picnic pavilion:
empty,
bereft.
Beside it,
a spattered mess of yolk and white:
life’s potential
spilled out
by some anonymous predator.
Life is hard,
far harder than we know
through pampered days;
cruel, too,
and unspeakably random.
So many fruits of careful, loving preparation
cast aside
with one sweep of the predator’s paw,
one feathered flurry of raptor-wings.
And what of the wattle-and-daub sanctuary
of my life, my career (if I may use that un-theological word)?
There is sadness:
immense sadness,
mourning,
for all the cancer has swept away.
Sometimes I fear my vaunted call to ministry
has become but a smear of yolk and white
upon the deck.

Whose call is it, anyway,
I hasten to remind myself?

Out on the lake,
a man is rowing backwards,
facing towards the prow.
He wants to see where he is going.
Does he not trust the dread discipline
of rowing towards a destination he cannot see,
eyes fixed on the reference point?

Get up.
Get up and walk a spiral labyrinth
upon the dance floor:
a squared-off spiral,
defined by angular symmetry of faux-wood tiles.
Constriction
on the way in,
tightness.
Options, one by one,
falling away.
At the center,
a swift turn upon the heel:
scarcely room to breathe.
But then,
but then, the turning.
“To turn, turn will be our delight,
till by turning, turning we come out right.”

What of the ravaged nest?
What of it?
Shall my eye continually be drawn
to such a horror?
What of the bird-mother,
whose eye must have,
one time at least,
been drawn to that appalling sight?
There is birdsong in this place,
to be sure,
but no black-winged mourner,
perched disconsolately upon a rafter.

Then
comes the Sweeper,
broom in hand.
His eye falls upon the downed nest
before he stoops down,
pausing scarcely a moment,
and picks it up in two fingers
before walking solemnly to the rail
and tossing it gently into the lake:
burial at sea.
A squeeze-bottle of pink disinfectant
completes the ritual,
soaking the boards:
chemical absolution.
A few passes of this Undertaker’s broom,
and all that remains
is a wet spot upon the planking.
Nature,
like the mother bird,
has a way of moving on,
it would seem.
(Later,
Archangel Janitor paces slowly away,
squeeze-bottle in one hand,
rag in the other.)

Tears wet my eyes
as I recall how many days I have wasted:
days the Lord has made,
intended for rejoicing.
How many pounds of walking burden
have I allowed to gather at my waist?
How many meaningless rectangles of paper –
8½ by 11, and other shapes and sizes –
have I allowed to join the dusty disarray
on my abandoned desktop?
Have I become a bystander to my own, neglected life,
in ways the mother bird
never allowed herself to be?

I sit, davening, upon my folding chair.

“What are you doing here, Elijah?”
“I have been very zealous for the Lord, the God of hosts.”
I have fought the helmeted cancer-hordes to a draw.
(So far, they have not returned,
but for the occasional, ominous scout.)
“I, I alone am left” has been my cry.

The Lord, of course,
would not,
does not
let a true prophet get away
with such an easy answer.

My way back
is serenaded
with birdsong.

May 28, 2009 - On Not Jumping the Gun

Today I read an online article about prostate cancer – specifically, how some men who get regular PSA tests may end up getting overtreated for the disease.

It’s a situation that’s parallel to my NHL, because of the similar, watch-and-wait treatment protocol.

Man gets PSA test. Test detects a small, almost insignificant presence of cancer. Knowing most prostate cancers are slow-growing, doctor recommends watchful waiting. Patient, who’s just heard the word “cancer” for the first time in a medical diagnosis, flips out, imploring the doctor get rid of the cancer, whatever it takes. Under pressure, doctor initiates treatment – despite the possibility of debilitating side effects and the knowledge that the treatment is likely to be no more effective now than later.

It’s all because of the patient’s panicky reaction to the word, “cancer.”

I know. It’s only human to respond that way. I did, myself, when I was first diagnosed. We’ve been taught to think of cancer as a killer, that must be excised from the body instantly, no matter how difficult that process may be.

You can see this in the way some people use the word “cancer” as metaphor. If someone speaks of “a cancer on the organization,” or something similar, it means the offending member must be drummed out of the corps, post-haste. That’s what we do with cancers, right?

Sometimes, but not always. Not when it’s a slow-growing cancer – like most prostate cancers, or my indolent NHL.

I’m away at a church conference this week, the national meeting of the Presbyterian Association of Stated Clerks. Today, at the breakfast table in the conference center dining hall, a colleague I haven’t seen in a while asks me how I’m doing. I explain the watch-and-wait thing, and she at first assumes I’m in remission. No, I’m not in remission, I correct her. It’s been 3 years since my treatment, but my remission only lasted about 8 months. The cancer’s been back ever since then, but we’ve yet to treat it, because it’s still too small to treat.

She gives me a quizzical look that reveals she clearly doesn’t get it.

I explain to her that my cancer is one that doesn’t – in fact, shouldn’t – be treated immediately (and that this is a tough idea for any of us to wrap our minds around). Doing so will just deplete the number of implements in the doctors’ treatment toolbox, tools that may be needed later when the cancer does get big enough to treat.

After my lengthy explanation, my friend does get it – but, I rather suspect she goes away thinking I’ve got some superhuman reserves of psychological endurance, being able to get up and walk around each day, as I do, with the knowledge there’s untreated cancer inside me.

It’s not that big a deal, though. It really isn’t. Once you get used to the idea that you’ve got an indolent cancer, and understand what that sort of cancer really is, you can function rather well. Sure, there’s a constant, low-level sense of unease about the future, but it is low-level.

You have cancer. You live with it. Somehow, with a little help from your friends, and your God, you get by.

As long as you don’t jump the gun.