March 30, 2008 - Arlen Specter on Cancer Survivorship

Check out this March 27th NBC News interview with Senator Arlen Specter, a Hodgkins Lymphoma survivor, in which he speaks frankly about the shock of his diagnosis, tips for getting through chemotherapy, the reactions of others and the importance of getting a second opinion:

March 28, 2008 - Incarcerated

Incarcerated. That’s the word I heard a couple of days ago from Dr. David Cheli, our family physician, after he took one look at my bulging navel. I have an incarcerated umbilical hernia, it seems. (Or had, anyway.)

I’ve known about the hernia for several years. It’s given me no trouble, and Dr. Cheli’s advice was simply to let it be, avoiding any strenuous abdominal exercises that might make it worse. These things sometimes do require surgery, he told me, but as long as the hernia wasn’t bothering me, there was no reason to go under the knife.

What’s happened this week is that the hernia did start bothering me. On Tuesday, I noticed it bulging out further than before, and I started feeling some pain. It looked and felt like someone had come along during the night and inserted a golf ball under my skin, just to the side of the navel.

I went to bed on Tuesday hoping the situation would resolve itself on its own, but when I awoke on Wednesday and noticed that not only was it still the same size, but that it had become inflamed, I figured it was time to pay a little visit to the doctor.

Dr. Cheli took one look at it, told me I’d probably need to have surgery that very day, and immediately flipped open his cell phone and began making arrangements. He called Dr. Gornish’s group (the surgeon I’ve seen twice before in the operating room, first to implant my port and second for the abortive attempt to do an excisional biopsy of a lymph node in my neck). Another member of the surgical group was available that day; it turned out to be Dr. Mark Schwartz, who had removed Claire’s gall bladder several years ago. Dr Cheli also phoned Dr. Lerner, to make sure there was no reason, from the oncology standpoint, that I couldn’t undergo surgery. Dr. L gave it a green light.

I appreciated the fact that he also phoned Dr. Gustavo De La Luz, the pulmonologist who treats me for obstructive sleep apnea, to make sure he was on board this time around. I’ve had trouble with anesthesia in the past – waking up on the operating table during my port-implantation surgery, as I went into an apneic episode and the anesthesiologist scaled back the juice. Dr. Cheli wanted to be sure those issues were addressed, this time. He told me Dr. De La Luz or one of his associates would stop by and see me in the hospital, and presumably intercede on my behalf.

Did I have time to stop on the way to Ocean Medical Center and get a little something for breakfast, I asked? Not a good idea, said the doc. Better to have an empty stomach before surgery. Well, I thought to myself once I’d heard that, I guess this is really happening. (How swiftly life can change.)

I did make one stop on the way to the hospital – at home, to pick up my prescription meds, and a couple of personal items like my iPod and a book to read. They were expecting me, in the Emergency Room (Dr. Cheli had phoned ahead). Soon after getting me into a hospital gown and tagging me with an i.d. bracelet, they told me I’d be admitted for sure. Claire met me in the E.R., and stuck with me throughout the day.

The afternoon passed pretty quickly, with a trip over to X-ray and news of an on-again, off-again CT scan (it was called off at the last minute, for some reason I never did discover – although not before I’d already imbibed the contrast fluid). Around 5 p.m., I found myself flat on my back in the operating room, arms stretched out cruciform-fashion.

I’d previously learned I’d be having general anesthesia, rather than light sedation. This includes intubation to keep the airway open, so apnea wouldn’t be an issue. (General anesthesia is standard for this operation, anyway, it turns out.) “I’m going to start you with a little sedation now, said Dr. Chen, the anesthesiologist – and, the next thing I knew, I was waking up in the recovery room.

I stayed in the hospital overnight, coming home yesterday. I have another week or so ahead of me of recuperating at home. So, here I am, in much the same state I was in during my chemo treatments (minus the hair loss and the nausea, of course). The pain pills make me feel a bit wooly between the ears. The difference is that, this time, I’ll be over it in a few days.

Incarcerated. Yes, it’s the right word to use, for now.

March 23, 2008 - Encrypted with Christ

For my Easter sermon this morning, I decide to go with a slightly unconventional choice. Rather than basing it on the Gospel lesson (as most worshipers expect), I decide to speak on the Epistle – which, today, is Colossians 3:1-4.

The line that’s grabbed my attention is v. 3: “...for you have died, and your life is hidden with Christ in God.” It’s an odd statement: for, if the greeting is, “you have died,” then who could the listener possibly be? If it’s a true statement, then what ears could hear it?

Maybe only those who reside in the cemetery. In that place, truer words were never spoken. Yet, like the philosopher’s famous tree that falls in the forest where no one’s around to hear, if we went and proclaimed that message among the gravestones, would we really having a conversation?

The “Aha!” moment, for me, in writing this sermon, was the realization that the Greek word for “hidden” is krypto. It’s a word we know from “cryptology,” “cryptogram,” “cryptic.” That means we could translate the scripture text very literally indeed, so it would read, “your life is encrypted with Christ in God.”

That got me thinking about the Rosetta Stone, probably the most famous code-breaking device of all time. That slab of black, granite-like stone – with three parallel inscriptions, in Egyptian hieroglyphics, another ancient Egyptian tongue called Demotic and classical Greek – became the cryptographic key for unraveling the secrets of hieroglyphics. Up to that point, no one in the world remembered how to read hieroglyphics. The translator, Jean-François Champollion, fulfilled the herculean task of using the stone to break the code. Once he had done so, all other translations of hieroglyphics became child’s play (relatively speaking).

There’s much that is mysterious about human life – and, human death as well. What happens after we die? No one can say for sure – apart from certain, highly poetic passages of scripture that have provided much of the imagery we tend to associate with heaven (clouds, choristers, pearly gates and the like). While a few Christians take such passages literally, most understand them metaphorically. The true heaven is likely to be a bigger reality than earthbound human minds can comprehend.

The theologian Douglas John Hall once admitted that he’s mystified by the resurrection, as well. “I don’t claim to understand it,” he wrote in one of his books, “but I do stand under it.” (You don’t need to understand it; just stand under it – I like that.)

It seems to me, I tell the Easter crowd, that we can look on the resurrection of Jesus Christ as the cryptographic key that enables us to plumb such mysteries (at least, up to a point). The resurrection is our Rosetta Stone. We can’t fully understand the concept, but we can utilize it as a sort of interpretative lens, through which we can view all of life, as well as death.

There is much that is dark and mysterious about cancer, as well. Why do some get the disease, and not others? Why do some have a harder time with it, and others manage to muddle through with apparent ease? How ought we to cope with debilitating side effects, not to mention the sheer emotional weight of carrying such a health burden, over time?

The answers to such questions, it seems to me, are hinted at in Jesus’ resurrection. It’s a story that’s been filtered through centuries of retelling. The only way to grasp it is to accept the biblical witness, in faith.

There are multiple biblical witnesses, of course – and some of them disagree with one another. Does it detract from the authority of the Bible to have four separate Easter stories – some of them contradicting the others?

Not if the resurrection is real.

If the resurrection were not real – if someone had made the story up – you'd expect there would be just one account, perfectly structured and beautifully narrated. What we have instead are these four versions: each one flawed, each one compelling in its own way. Each one tells us something worth knowing, but each one also leaves us feeling hungry for more.

Growing into a serviceable understanding of the resurrection is the journey of a lifetime. For those of us with cancer, who may be faced with the reality of a shorter lifespan, there’s no time like the present for claiming this ancient proclamation for our own.

The Lord is risen – risen indeed!

March 22, 2008 - How Far We've Come

In his “My Cancer” blog entry from yesterday, Leroy Sievers compares his experience as a cancer survivor to his experience as a war correspondent, ducking bullets in some of the world’s worst trouble spots.

Cancer, he says, has been more difficult:

“Trying to cope with my cancer is the hardest thing I've ever done. Harder than any war. The toll on my body has been substantial, greater than any hardship I've endured.

And like those other major experiences, it has taught me things. I've learned more about who I am, more about strength and courage, more about life.

My career prepared me for that war, five years ago. I don't think anything can prepare you for cancer.”

Leroy’s got it right. Cancer is a stern and demanding teacher. Earning this diploma – which nobody in their right mind seeks – requires many of us to rise to ever more grueling challenges. With colon cancer that’s metastasized to his spine and lungs, Leroy’s had it harder than many. Yet, just about anyone who’s ever heard those words, “You have cancer,” can look back on the experience afterwards and marvel, “How far I’ve come!”

It’s one of those overused bumper-sticker sayings, to be sure, but it’s also true: “Whatever doesn’t kill us, makes us stronger.” Those who have the audacity to believe in the resurrection can attach a little addendum to that saying: even the thing that one day kills us will do the same.

March 21, 2008 - For Whom the Bell Tolls

Today is Good Friday. The tradition in our community is for several of the churches to come together for an ecumenical worship service. The service, which lasts from noon till 3 p.m., includes sermons and musical contributions by a number of different people. Worshipers come and go within that time period, as they are able. This year, our church is playing host.

Some years I’m one of the preachers, but this time around, the only thing I have to do is offer some words of welcome at the beginning and generally hang around the fringes, giving a nod to each of my colleagues when it’s time for them to step up to the chancel and deliver their message.

The service ends with “The Tolling of the Bell” – a note of solemnity that has a distinctly old-fashioned quality to it. Because I haven’t arranged ahead of time for anyone else to do this, I decide to pull on the rope myself.

OK, I’ll admit it. I could have delegated this small task, but didn’t. For some odd reason, I like to ring the bell. There’s something earthy and satisfying about grasping hold of the rope, placing each of my hands just above the strategically-placed knots, and giving it just the right sort of sharp tug, evoking a resounding “bong” from high overhead.

Thirty-three times I pull on that rope: one tug for each year of Jesus’ life on earth. In between each sounding of the bell, I pause for a second or two. During those intervals, I can hear, through a nearby stained-glass window, traffic noise coming from the street outside.

Here in the church, we’ve just finished three hours of scripture readings, sermons and achingly beautiful music, that together tell the story of Jesus’ passion and death on the cross. The pace is slow: it reminds me of the sort of suspension of time that takes place in a hospital room, with a family gathered around their loved one, waiting for death to bring blessed release. Outside, there are people going about their daily lives, oblivious to the drama taking place within these walls.

I find myself wondering what those people in the street outside are thinking, as they hear the tolling of the bell. Thirty-three slow and steady soundings of a church bell takes a rather long time. It goes on for two or three minutes, at least. In an earlier era of our history, when church bells were used to signal fires, national emergencies and the like, not to mention ecclesiastical observances, the whole town would have stopped whatever they were doing to ponder the import of that echoing sound. Then again, in that earlier era – when the church played a bigger role in civic life – most people wouldn’t have wondered what all the bell-ringing was all about. Good Friday, three o’clock – they would have just known, without having to ask.

Today, though – who can say? Why, there are even some stores that offer Good Friday Sales – as though any day off work and school is a prime opportunity to pull out the plastic and bring home the bacon.

The cancer community’s like that, too, in a way. We whose lives have been touched by this disease hear the distant tolling of a bell, resounding through our consciousness. Outside, life goes on, oblivious. Inside, we look at one another, and know.

March 19, 2008 - Zevalin Knocks 'em Down

Here’s an encouraging development from the world of lymphoma research, reported in the British medical journal, The Lancet.

A recent study in Italy has returned very encouraging results for the radioimmunotherapy drug, Zevalin, in treating advanced follicular lymphoma patients. This was a first-line treatment: none of the patients had ever been treated before. Each of these 61 patients first received 6 treatments with a chemo cocktail of fludarabine and mitoxantrone (that’s different from the R-CHOP combination I received), then two infusions of Zevalin.

According to a Reuters news report, after chemo alone, the results were pretty impressive: “The overall response rate after chemotherapy was 98%: 43 had a complete response, 17 had a partial response, and 1 had progressive disease.” But then, when Zevalin was added, the results were even better:

“All but two patients had a complete response after [Zevalin] treatment.

Furthermore, 14 of 18 patients tested achieved molecular complete remission, defined as the absence of BCL-IgH rearrangement in bone marrow and peripheral blood.

‘With a median follow-up of 30 months,’ Dr. Zinzani's team reports, ‘3-year progression-free survival was estimated to be 76% and 3-year overall survival 100%.’”

This is concrete evidence of the truth of the “treatable” adjective, that’s part of the “incurable-but-treatable” label frequently used to describe follicular NHL. The effectiveness of radioimmunotherapy drugs in the treatment of the type of lymphoma I have seems indisputable.

Zevalin, of course, was one of the radioimmunotherapy drugs nearly pulled from the U.S. market at the end of last year, because Medicare reimbursement rates had been set too low to pay for their continued manufacture (the other one was Bexxar). Thankfully, Congress bailed these two drugs out at the eleventh hour.

It’s encouraging to know that, at such time as I will require further treatment in the future, the doctors will have effective medicines like these to pull out of their toolboxes.

March 15, 2008 - The Bucket List

Yesterday, Claire and I went to see the film, The Bucket List, at our local second-run movie theater. We don't get out to many movies in theaters, and this is one we'd meant to see on its first time around, but missed. We're glad the Beach Cinema in Bradley Beach gave us a second chance.

In case you haven't seen it or read about it, the film is about billionaire executive Edward Cole (Jack Nicholson) and blue-collar mechanic Carter Chambers (Morgan Freeman). These two men are sharing a hospital room on a cancer ward when they both learn they have fewer than six months to live. They decide to stop behaving as though they are already dead. Bankrolled by Edward's substantial fortune, they check out of the hospital and live their lives to the fullest in the short time they have left. Living life to the fullest, for Edward, involves field trips like skydiving, visiting the Pyramids and getting a tattoo – macho activities that set the ol' adrenaline a-pumping. Carter's ideas are more modest and more values-driven – "witness something truly majestic," "help a complete stranger" – although he enthusiastically joins in on the race-car driving and touring the world on a private jet. All these are detailed on a scrap of paper from a yellow legal pad they call the "bucket list": the things they want to do before they kick the bucket, which they then scratch off the list, one by one.

It's a buddy movie for the cancer set. In any other circumstances, these two men would have been unlikely to become friends, due to differences in background, wealth, temperament and religious beliefs. Yet, they do become friends. The thing they have in common is cancer, and an awareness that their days are numbered.

The film's plot has been savaged by some critics for being contrived, but the fans evidently loved it. It was the number-one film in theaters for a time. Surely, a large part of its appeal is the chemistry between these two accomplished actors, but I think it also has to do with the way the film fearlessly takes on big, philosophical questions like the meaning of life, death and religious faith. The Bucket List doesn't supply a lot of answers, but the journey is a fine ride.

I was especially impressed by the role religious faith plays in the film. Edward, the over-the-hill hedonist, is a frank and rather prickly agnostic, declaring that the sum total of his belief is "We live, we die and the wheels on the bus go round and round." Carter gently declares his faith in God, although he admits it's not based on empirical evidence. That's what faith is all about, he tells his new friend. To him, faith is clearly not a truth distilled from empirical analysis. It's not something you deduce. It's something you do.

Does Edward get the message? The film hints that he does, leading him to a sort of personal redemption, through repairing some long-sundered family relationships (I won't say more than that, so as not to be a plot-spoiler).

I've never been as sick as the two men in the film, but the scenes of them learning of their cancer diagnosis did strike a chord. News like that sure does pick you up, turn you around and put you back down in a different place.

Everyone should see this film. It's a gem.

March 11, 2008 - The Small-World Cancer

This evening I attend a talk by Arnold D. Rubin, M.D., Professor of Medical Oncology at Robert Wood Johnson Medical Center in New Brunswick, N.J. He's affiliated with the Cancer Institute of New Jersey. The program is sponsored by the New Jersey Chapter of the Lymphoma Research Foundation.

Dr. Rubin's introductory explanation of the underlying biology of lymphoma is among the clearest I've ever heard. Most of what he says I've heard before, but he has a way of putting it that makes it very clear indeed. I come away with a more precise understanding of this difficult material.

One comment he makes, in the question-and-answer time, makes a particularly strong impression on me. One of the audience members asks Dr. Rubin if he has any explanation for why cases of lymphoma have increased tremendously in recent years, even as incidences of other cancers are going down.

No one really knows the answer to that question, the doctor replies. Then, he ventures a theory of his own.

It's because the world is smaller, he explains. Through most of human history, travel was relatively rare. There was much less mingling of people from different parts of the world. Our cities are different, today. They're veritable melting-pots of migrants who hail from every corner of the earth.

What this means is that we are all being exposed to a great many more different antigens – foreign substances that enter our bodies and must be neutralized by our immune systems – than ever before. Because lymphoma is a cancer of the immune system that begins with the failure of a single lymphocyte (a white blood cell) to self-destruct, after failing to fight off a specific antigen, then if there are a great many more such failures nowadays, it would stand to reason that there's a proportionately greater chance of a cancerous blood cell developing. All it takes is one such mutation – just one, out of millions – to start off a chain-reaction of lymphoma that ultimately spreads throughout the entire body.

OK, maybe I've lost you with that explanation. Let me try to explain a little more of the underlying biology Dr. Rubin explained to us.

When an antigen enters the body – actually, not one, but a great many invader cells – one of them is conveyed to a lymph node. A lymph node is a sort of waiting-room where lymphocytes congregate. New lymphocytes are entering the node all the time. Each one gives the intruder the once-over, attempting to recognize it. The process of recognition is chemical: each lymphocyte contains certain receptors on its surface that match up with the chemical signatures of a certain, limited number of antigens. If a given lymphocyte has the right code on its surface, it goes off on a seek-and-destroy mission. If the lymphocyte doesn't contain the right chemical signature, it doesn't do what we'd expect it to do: go back to the barracks, to live and fight another day. No, it does something that sounds incredibly wasteful to our ears. It self-destructs. It seems our bodies are making so many new lymphocytes all the time, there's no room for slackers.

Healthy lymphocytes are kind of like the Terminator character, played by Arnold Schwarzenegger in the 1984 movie of that same name. Remember how Ah-nold's robotic character – programmed to kill a certain woman named Sarah Connor (played by Linda Hamilton) – was sent back from the future? It seems Sarah's destined to give birth to a son, who will one day grow up to lead a movement to save the human race from robots like the Terminator. This fearsome cyborg has been sent back from the future, to try to change history by murdering the mother of his race's nemesis.

That's the back story. The detail I'm interested in is that the Terminator is programmed to destroy one person and one person only. Everyone else is safe from him (unless, of course, they have the misfortune of getting between him and his quarry). Now, imagine it's not just one Terminator who's been sent back from the future, but millions. Each one is programmed with the DNA of a relatively small number of human beings: yet, if these Terminators don't immediately recognize their victims, they self-destruct – turning into a puddle of molten metal. That is, until one particular Terminator's self-destruct mechanism goes awry. He starts growing bigger and more powerful. He also starts cloning himself, so more and more mass-produced Terminators exactly like him start to roam the earth. They don't directly attack many humans – they're still programmed to seek out and destroy only a few selected individuals – but, their sheer numbers and size eventually make it hard for any humans to survive.

Now – at the risk of stretching our analogy even further out of shape – let's say the cyborgs from the future don't send just one Terminator back to our own time. Millions of them are arriving all the time. Most take a brief look around, and then die. Yet, the more Terminators show up, the more chances there are that the circuitry of one of them will go kablooey, and the processes of growth and rapid reproduction will commence.

Sarah Connor is like an antigen, as far as these Terminators are concerned. The more antigens make their way into our bodies – as we rub elbows with people from all over the planet – the more lymphocytes our bodies call forth to fight off the intruders. There's a corresponding increase, then, in the chances that one of those lymphocytes will go bad – failing to commit chemical hara-kiri when it's supposed to, and starting to clone itself instead. Millions of these immortal clones later, we have a problem called lymphoma.

If Dr. Rubin is right, the explanation for the rapid proliferation of lymphoma cases in recent years has nothing to do with environmental pollutants, nor artificial sweeteners, nor cell phone towers, nor most any other imaginative explanation we'd care to mention. The more people migrate around the world, creating diversity in our communities, the more our immune systems have to work overtime to fight off various microbes and viruses. The more lymphocytes – the more tiny Terminators – our bodies produce, the more likely it is that one of those bad boys will go really bad, saying, "I'll be back!"

It's a small world, after all. Mostly, that's a good thing. In the case of our immune systems, it's decidedly not.

March 10, 2008 - Worth the Wait?

As frustrating as it can be to pursue a watch-and-wait cancer treatment strategy, one bright side is that the longer I wait, the more likely it is that new treatments will become available. One promising area of research is that of therapeutic cancer vaccines. A recent posting on the Leukemia and Lymphoma Society website highlights some of the new medicines currently in development.

Cancer vaccines, as I’ve said in earlier postings, are different from preventative vaccines. They don’t involve dosing people with a mild case of cancer in order to prevent future, more severe cases (as is the case with, say, childhood vaccines for measles or polio). What they do, instead, is train the body’s immune system to more effectively fight off a cancer that’s already present.

That means they’re kind of like a boxing coach. They don’t do the fighting themselves, but rather train and encourage the fighters – the patient’s own white blood cells – to get back in there and slug it out.

As the article puts it, these new vaccines “can also be ‘gene therapies,’ that is they can involve the introduction of genetic material (RNA or DNA) into cells before they are given back to a cancer patient. The field of gene therapy was born more than thirty years ago with new approaches to treating human disease by either replacing damaged or missing genes with normal ones, or by providing new genes as in these new cancer vaccine strategies.... These and other gene therapies may someday make cancer a manageable disease and even provide cures.”

Now, that would be something worth waiting for!

March 7, 2008 - Stability

I’ve been thinking a lot about that word, “stable,” as applied to my enlarged lymph nodes. When the doctors use that word, they mean to say the cancer has remained the same size, over time. While I’d surely rather hear “stable” than “advanced,” I also realize it’s not as favorable as “reduced” or “disappeared.” It’s smack dab in the middle of the spectrum of possibilities.

Apart from the cancer context, “stable” is generally a good word. If you’re building a house, you want a stable foundation. If your son or daughter is getting engaged, it’s a good thing if the other young person is stable – emotionally grounded, economically well-established. While “stable” may suggest, to some, a Babbitt-like stodginess, it sure beats a lot of the alternatives.

To members of the Roman Catholic monastic order, the Benedictines, stability means far more. It’s an organizing principle of their community. Centuries ago, when Benedict was writing his famous monastic rule, he was alarmed by the tendency of some monks to travel from monastery to monastery, partaking of the hospitality of the brothers for a time, then moving on to greener pastures (or, in a few cases, better-stocked wine cellars). When conflicts arose between neighbor monks, in those early days, it was all too easy for one of them simply to pull up stakes and move on, without addressing the underlying spiritual problem. It’s akin to what our friends in Alcoholics Anonymous call “taking the geographic cure.”

Benedict promulgated the rule of stabilo, or stability. This meant a monk’s lifetime vows were taken not only to the Benedictine order, but also to the particular monastery. To this day, it’s an unusual thing for a Benedictine to relocate permanently to another monastic house (although they do sometimes live elsewhere for a time, to pursue academic studies or other temporary work).

An article posted on one Benedictine website quotes Dom Jean Leclercq: “Stability is derived from stare, which means to stand, and also to be still. From this comes its figurative meaning – to be firm, to stand fast, to endure, to persevere, to be rooted.”

The article goes on to say:

“The evils that stability of heart seeks to avoid, are ones that our times reflect so clearly, such as restlessness of mind and heart, thirst for new experiences and the allure of ‘life in the fast lane.’ Pursuit of these often results in the diminishing of the desire for depth, life becomes superficial, an unceasing search for new and exciting adventures.” (“Stability - Stability of Heart,” by Fr. Hilary Ottensmeyer, OSB.)

Stability of a cancerous tumor is not such a good thing – better than the alternative, of course, but still not so appealing as that blessed word, “remission.” Yet, when it comes to our inner, spiritual and emotional life, stability is a good thing indeed. I suppose the spiritual challenge of living with indolent cancer lies in cultivating a certain inner stability – a virtue that’s still largely eluding me. That “restlessness of mind and heart” is all too typical of my days.

From our Benedictine friends, once again:

“St. Benedict has a favorite image to help us hold the concept of stability of heart deep within ourselves – ‘the image of our life with God as His household, a household that He has founded on a rock.’ The flood waters of temptation, restlessness, discouragement may threaten to sweep away the house, but won’t because it is founded on a rock.”

That’s surely an allusion to Jesus’ words in Matthew 7:24-25: “Everyone then who hears these words of mine and acts on them will be like a wise man who built his house on rock. The rain fell, the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on rock.”

Now, there’s a stability I could learn to live with.

March 5, 2008 - Unpreventable

This afternoon I have my 3-month appointment with Dr. Lerner. He looks over the radiologist’s report from my Valentine’s Day CT scan, and confirms that, yes, the cancer is stable. If anything, he says, one of the enlarged lymph nodes in my mid-section seems to have diminished slightly in size – although it’s by such a small amount that it is, for all practical purposes, the same.

His physical examination of me – palpating the lymph-node areas around my neck, armpits and groin – reveals nothing out of the ordinary.

Pointing out that it’s been six months, now, since the cancer has grown, I ask him if this long stretch without changes is something he sees often. Yes, he says, this is the way indolent lymphomas often behave. Sometimes they move ahead for a time, sometimes they stall, sometimes they even diminish in size. As long as I’m feeling well and have no symptoms, there’s no call for treatment.

I ask him if there’s any scientific explanation for why indolent lymphomas grow in fits and starts like this. He says no, science doesn’t know why this cancer behaves this way. “There’s nothing we can do to prevent it, either,” he goes on. “We just watch it, and when the time is right, we treat it.”

“Incurable, but treatable.” I’ve been familiar with that terse description for some time. To that I can add another adjective: “unpreventable.” Incurable and unpreventable – now, there’s a surefire recipe for feelings of helplessness! My doctor’s just told me there’s nothing I can do – no diet, no exercise, no medicine – that will have the least effect on how rapidly my malignancy advances (not anything modern medical science is aware of, anyway). The best I can do is to remain vigilant and strive to live an ordinary life, trying to ignore the cancer monkey clinging to my back.

There’s nothing I learn today, from Dr. Lerner, that I haven’t heard before. For some reason, though, the word “unpreventable” seems highlighted in my mind. It’s actually a comforting thought. It’s reassuring to know I’m not falling down, in some way, in my preventative self-care.

I know there are a lot of alternative therapies out there. I could pursue some of them, were I of a mind to do so. But, I’m not. I’m skeptical of purely anecdotal claims of effectiveness – which is mostly what I hear, in favor of such nostrums. I suspect part of the appeal of these treatments is that they’re a way for patients to feel like they’re doing something, at a time when there’s not much to do, other than wait.

Unpreventable. Assuming you already know you have cancer, it’s a good word to hear.

March 4, 2008 - The Uncertain Now

I’ve been reading Happiness In a Storm: Facing Illness and Embracing Life As a Healthy Survivor, by Wendy Schlessel Harpham, M.D. (Norton, 2005). Wendy discovered my blog a while back, and we’ve exchanged a few e-mails. She thoughtfully sent me a copy of her book.

I’m finding lots that’s useful in it. Wendy is a longtime NHL survivor who, her doctors told her at the time of her diagnosis in 1990, wasn’t supposed to live longer than a couple of years. She’s certainly defied those expectations. After her first recurrence, she decided to lay her medical practice aside and focus on her own healing, during which time she’s authored a number of self-help books for cancer survivors.

Here are some words Wendy wrote that express how I feel much of the time, as I deal with continued, low-level uncertainty:

“A great challenge for me was figuring out how to transform my heightened sense of uncertainty from a source of fear to one of joy. The problem was that after my cancer diagnosis, I knew – really knew, in a way that I think might be impossible without personally facing a life crisis – that all comfort and routine can dissolve in an instant. A worrisome headache, lump, or change in a mole could propel me on another medical roller-coaster ride. For the first few years of my survivorship, my heightened sense of vulnerability caused me great distress and made it hard for me to feel or be happy, even when my medical condition was on the upswing. How could I feel happy today knowing that my health might he worse tomorrow?

Some patients achieve Healthy Survivorship by denying life's uncertainty, and that works well for them. Not for me. So my challenge became figuring out how to turn the same hyperawareness that used to steal joy into a force that would enhance my joy. Consciously choosing to be grateful for life's uncertainty has changed my perception of all I have in positive ways. Clichéd but absolutely true, the only thing that is certain is today, this minute, this moment right now. This is it. Cancer gave me today, every day, in a way I’d never known before. Since I no longer take much of anything for granted, everything has an added element of happy surprise – I made it to see this, do that, stay here, and go there! The ordinary has become marvelous. Even unpleasant times are less painful, for they are proof that I am still here.” (pp. 339-340).

Living in the now – aye, there’s the rub! Easy to say, far from easy to do.

Wendy thinks gratitude is a big part of living in the now, and I think she’s right. Learning to be grateful for the little things, even when a big thing like long-term good health is far from certain, can be a bridge to shedding anxiety and living fully in the present.

“Today’s a gift,” says the bumper-sticker slogan – “that’s why they call it the present.”


May we learn to recognize those gifts all around us, open them with childlike wonder, and be thankful!

March 3, 2008 - The Dark Valley

On recent Sunday mornings, I’ve been preaching a sermon series on the the 23rd Psalm. Yesterday, I got to the verse that’s surely the most famous: “Yea, though I walk through the valley of the shadow of death, I will fear no evil.”

Actually, that line from the King James Version is a mistranslation. The original Hebrew never mentions death. What it literally says is something like, “Though I walk through the valley of deep shadow.” If that’s the case, then where did “the valley of the shadow of death” come from?

I looked it up in the Septuagint, that Greek translation of the Hebrew Bible, dating from a century or two before Jesus. Bingo! There it was: thanatos, or death. Some ancient Greek translator waxed poetic, assuming the psalmist meant to sing about death, not merely darkness. Well over a millennium later, the scholarly translators employed by King James of England looked at copies of the Septuagint as well as the Hebrew, and carried that error forward. Oddly, they chose the Greek translation over the Hebrew original

And, “the valley of the shadow of death” it’s been, ever since: birthing a tradition of reading this psalm at funerals. In the eyes of many Christians today, Psalm 23 is the funeral psalm: even more than Gospel passages dealing with Christ’s resurrection, which surely ought to be the main focus.

I have a strong conviction that Psalm 23 isn’t about what most people think it is: a flock of sheep being faithfully tended by their shepherd. I've been teaching an alternative view during the sermon series. I think Psalm 23 is about a fearful traveler, lost in the desert, who happens upon a shepherd, who shows him hospitality and leads him home. A shepherd is exactly the sort of person you’d want to meet, were you lost in the wilderness. A shepherd knows how to survive in the wilds, and also knows the way home.

Most modern translations don’t use “valley of the shadow of death.” They speak about a “dark valley,” instead. Likewise, a good number of them don’t talk about being led along “the paths of righteousness,” either. They talk about “right paths.” This isn’t just academic revisionism: these translations are closer to what the text actually says.

Pursue these more literal translations, and the meaning of the psalm opens up before our eyes. The “right paths” refers to the lost traveler finding his way. The “dark valley” is a deep gouge in the earth, a wadi, through which the traveler walks, following his shepherd-guide. Late in the day, with the sun nearing the horizon, this place is creepy, filled with shadowy fears. Sure, darkness is an archetypal metaphor for death, but it also evokes other fears as well. Let’s not imagine the 23rd Psalm can only serve as a funeral reading.

Here are a few other things I mentioned in my sermon on this verse, by way of practical application. First, the word “shadow” is significant. What is it that makes a shadow? Why, light, of course. There are no shadows at night-time; the shadows happen only in the day. So, too, with the shadows that creep across the dark valleys of our lives, the shadows the poets among us have called the shadow of death. There would be no shadow, were there not already a source of light.

Second, there’s a world of meaning in that little, insignificant-sounding word, “through.” The psalmist doesn’t speak of walking into the dark valley. He talks of journeying through it. This is not a box canyon – the kind of place where, as in the movie westerns, the road suddenly dead-ends at the foot of a forbidding cliff, and the good guys risk being bushwhacked by desperados. The pathway descends into the valley, yes, but eventually it will begin to climb upward once again, leading us out the other side.

Finally, it’s useful to ask the question of what’s the real object of fear in this verse. It’s not the shadows that are frightening. There’s no mention of fear of the dark. What the psalm-writer fears is not the dark, but evil. It’s not so much the darkness, as the things that dwell within it: the ravenous beasts that could leap out, threatening his life.

I don’t think most people dealing with life-threatening cancer fear death, strictly speaking – nor do most elderly folks, who (unless they're in deep denial) do the math and figure their days are numbered. For most of us, once we put our leftover adolescent bravado behind us and get used to the idea that we’re really going to die someday, it’s not death we fear. It’s the dying – the pain or suffering that can go along with it – that gives us pause. If modern pharmacology can spare us most of the physical suffering – and very often, it can – then we just might be able to discard the advice of poet Dylan Thomas and “go gentle into that good night.”

I’ve spent some time hiking through the dark valley in recent years. Just at the moment, I’ve come out of it for a time. But I know I’m always just one CT scan away from feeling the chill of impending night again, and hearing the howl of the jackal.

I ended up, yesterday morning, by reminding the saints in Point Pleasant how we Christians can step out beyond what even the psalmist learned, from his fortunate rescue by a shepherd, about getting through such a dark time. Especially during this season of Lent, as we identify with Jesus on his journey to Jerusalem and the cross, we can draw the conclusion that he is our shepherd: he, whose life was not swallowed up in the shadowy darkness of the valley, but came out the other side.