September 30, 2008 - A Surgeon's Perspective on "Watchful Waiting"

Flying back from Utah the other day, I finished reading Pauline W. Chen’s insightful memoir, Final Exam: A Surgeon’s Reflections on Mortality (Knopf, 2007). Pauline is a liver-transplant surgeon, which means she’s spent her professional life at the edge of high-tech innovation. Sometimes she’s part of the surgical team that helicopters in to harvest organs from the body of a dying accident victim, pops them into an ice-filled cooler and flies them to a distant city. Other times, she’s on the receiving end of those precious deliveries, implanting the harvested liver into an otherwise-dying patient.

This work has given her a unique perspective on life and death. From the brain-dead body of a patient who’s breathing with the aid of machines, she salvages living tissue that just may save another’s life. It’s hard to imagine a more heroic occupation.

Far from celebrating transplant surgery’s technical razzle-dazzle, Pauline appeals for heightened awareness of the emotional side of medicine. She reminds her colleagues that, when the risks of surgery are too great and a patient cannot be saved, the doctor has a continuing responsibility to care for the patient’s emotional needs - rather than abandoning the person to others, out of fear of medical failure.

I was intrigued by this lengthy passage, in which she reflects on how the “watchful waiting” approach to treatment troubles many of her surgical colleagues:

“There is no mistaking the heady exhilaration you feel when you walk into the cool and ordered operating room, pull out all the technical gadgetry and wizardry of the moment, and within a few hours solve the essential problem. Surgery is a specialty defined by action. As a student of mine once said, ‘Surgeons do something about a problem, not just sit around and think about it.’

But surgeons are not alone in this doer’s paradise. While surgery, particularly liver transplantation, represents an extreme, even physicians in specialties with little or no ‘invasive’ procedures feel compelled to do. A patient visits with a problem, and the appointment is incomplete without a prescription for medications or tests or some tangible diagnosis.

Even medicine’s essential framework for approaching clinical problems – the treatment algorithm – presumes physician action. Frequently diagrammed in textbooks and medical journals, these algorithms outline step-by-step therapeutic plans for different diseases. For every point along the algorithm there are several possible outcomes that in turn may have several of their own possible therapeutic options. On no branch of the decision tree, however, is there a box reserved for Do nothing or Hold tight or Sit on your hands. Instead, if no treatment is required, we describe the waiting as an active, not a passive, period. Treat with intravenous antibiotics for six weeks and then reassess may be part of the algorithm. Or we may decide on a course of what is euphemistically termed expectant management or watchful waiting, as if our therapeutic intervention is just being held temporarily at bay. Even in deciding to wait or do nothing, we imbue these periods with action. It is as if we are dynamically managing time and at the end of that time there may be more treatment for us to initiate.

We can confuse these interventions with hope, particularly at the end of life, and equate more treatment with more love. Any decision to hold or even withdraw treatment becomes near impossible, and not treating a patient the moral equivalent of giving up. Moreover, once treatments have started, there is an obligation to the interventions themselves. Having done so much already, doctors – and many patients and families – find it nearly impossible to let all their efforts simply drop.

In an attempt to display competency or undying love, we lose sight of the double-edged nature of our cutting-edge wizardry. We battle away until the last precious hours of life, believing that cure is the only goal. We inflict misguided treatments on not just others but also ourselves. During these final, tortured moments it is as if the promise of the nineteenth century has become the curse of the twenty-first.” (Pp. 147-148)

Quite naturally, I’ve been inclined to view the soul-numbing tedium of watchful waiting from my own perspective as a patient. Pauline’s book has helped me glimpse it from the viewpoint of my doctors as well. Turns out, we both wish we could do more.

The contemplatives have long taught that intentionally doing nothing – doing it with our whole being – is one of the most difficult of spiritual tasks. This is the point Martin Luther was getting at when he observed how his puppy jumped up on the table, then waited expectantly for a morsel of food dangled from the hand of his master. “Oh, if I could only pray the way this dog watches the meat!” Luther reflected. “All his thoughts are concentrated on the piece of meat. Otherwise he has no thought, wish, or hope.”

Fully engaged and mindful waiting is my own spiritual challenge these days. There’s something in me that wants to reach relentlessly into the future, fretting about what treatment may await me down the road. Ultimately, this is an abdication of the present discipline of waiting that has been given me.

“Let us then labour for an inward stillness –
An inward stillness and an inward healing;
That perfect silence where the lips and heart
Are still, and we no longer entertain
Our own imperfect thoughts and vain opinions,
But God alone speaks in us, and we wait
In singleness of heart, that we may know
His will, and in the silence of our spirits,
That we may do His will, and do that only.”

– Henry Wadsworth Longfellow, “Christus: A Mystery,” in The Poetical Works of Henry Wadsworth Longfellow, vol. 5 (Houghton Mifflin, 1851), pp. 313-314.

September 26, 2008 - Altitude

I've been living, for the past several days, at over 8,000 feet above sea level.

In my capacity as Stated Clerk of the Presbytery of Monmouth (a position I hold in addition to my pastoral responsibilities at Point Pleasant Presbyterian), I've been attending the Fall Polity Conference of our denomination. The conference is being held at the Snowbird ski resort in Utah: a very pleasant place to be, amidst some breathtaking mountain scenery. Most church conferences I attend aren't at such a luxurious place, but the church got a deal on the accommodations because it's still the off-season.

As with other times I've been at this altitude, I'm really noticing the effect of the lower oxygen levels on how I feel. Walking up a set of steps I'd ordinarily think nothing of, I find myself having to pause at the top to catch my breath.

I suppose this is what being elderly feels like - or, perhaps, what being anemic feels like. The quantity of oxygen circulating in our blood is so crucial to health and well-being. If I were here for a longer period of time, I'd acclimate to the higher altitude and would eventually return to feeling normal. I fly back home tomorrow, though, so the only thing that's going to end my low-level feelings of fatigue will be stepping off the plane at close to sea level.

Back during my chemo treatments, the doctors were closely watching my hemoglobin levels. I was fortunate in that my red blood-cell levels never dropped below normal, which would have made it necessary to take drugs like Aranesp or Procrit to build them back up again. I felt plenty weak, though, even with my blood cells at normal levels.

The persistent feeling of shortness of breath brings back my memories of cancer fatigue - how, during my final weeks of treatment, I found it difficult even to walk around the block.

It's all in the blood - and, as long as I've got a blood cancer, I'm going to find myself wondering, from time to time, whether I'll ever experience such feelings again.


"In God's hand is the life of every living thing
and the breath of every human being."
- Job 12:10

September 22, 2008 - Scanner Doubleheader

Today I go for a scanner doubleheader: a PET scan and a CT scan at Jersey Shore University Medical Center.

I’m using Jersey Shore this time (a Meridian Health hospital), rather than the for-profit Atlantic Medical Imaging (where I had my last PET scan, a PET/CT fusion) because my insurance situation has changed. Because Claire’s now working full-time for Meridian (as director of the Bereavement Program of Meridian Hospice), I’ve now got secondary medical insurance through QualCare (Meridian’s employee health-insurance provider). They reimburse at a higher rate for services performed at Meridian facilities, so it makes sense to switch providers.

I checked with Dr. Lerner about this first, of course. The message came back, through one of his office staff: if it would save me money, a PET scan at Jersey Shore, followed by a CT scan, would be fine.

I’m just as glad. I had a good experience at Atlantic Medical Imaging, but I’m aware of how much of a financial threat these physician-owned, freestanding diagnostic and surgical facilities are to hospitals. They skim off many of the most profitable portions of the hospitals’ trade, leaving them to handle less lucrative procedures – not to mention the charity-care patients who cannot pay. I went to Atlantic initially because they were the only facility in the area offering the PET/CT fusion scan, but since Dr. Lerner wants me to have a regular CT scan along with the PET scan anyway, it seemed like the right time to go back to patronizing the hospital.

Things go well, all in all. The PET scan technician tries and fails twice to get my IV line in properly, then has to call a nurse – but that’s a small matter. The PET scanner itself is located on the back of a tractor-trailer truck, that pulls up to a special access bay at the side of the hospital. The truck shuttles this expensive machine between several hospitals on a regular basis. Once you step aboard, though, it feels no different than any other room – a little smaller, that’s all.

It’s not pleasant to lie on my back, absolutely still, with arms extended over my head, for the 30 minutes or so the PET scan takes, but I get through it. Fortunately, the tech guides my hands to a mesh strap that some thoughtful designer included at back of the headrest. By hooking my thumbs through the strap, I’m able to take some of the pressure off my upper-arm muscles. Ah, the little things – they make such a difference. After the protracted PET scan, the CT scan is a piece of cake.

I’m not sure to what extent these scans are routine, for me. Last time I met with Dr. Lerner, he said he wanted me to go for another CT scan before our next 3-month appointment, but he was going to wait to decide about a PET scan until he’d seen the results of my detailed blood work. I guess there must have been something in those results that makes him want to err on the side of caution – though his office staff provided no details when they told me the doctor’s written instructions indicated a PET scan as well as a CT.

Maybe this is cause for concern, or maybe it’s not. I’ve been feeling a little anxious about it. I’ll find out for sure at my next appointment with him on October 1st – or maybe sooner, if I get a phone call reporting on my test results.

In the meantime, I’m in that medical-test limbo that’s so familiar to anyone who’s gone for a radiological scan: nobody can tell me anything until after the radiologist has examined the signs from the oracle.

(In case you're wondering about the picture to the right, it's the Oracle at Delphi - obscure mythological reference.)

September 16, 2008 - Know Your Nodes

Yesterday, it seems, was World Lymphoma Awareness Day – and I missed it.

Actually, I’d never heard of World Lymphoma Awareness Day. I think (though I can’t be sure) it may be something new.

Anyway, one of the critters the lymphoma organizations trotted out for their dog-and-pony show was an online quiz called “Know Your Nodes.”

It’s not so easy. I only got 70%. See how you do.

Click HERE.

September 14, 2008 - What God Can Do with a Guitar and a Brain Tumor

Recently, I’ve been enjoying the music of David M. Bailey, a cancer survivor and singer-songwriter. He comes from a pretty well-known family in Presbyterian circles – he’s the son of biblical scholar and missionary educator Ken Bailey.

At the age of 30, after David started experiencing severe headaches, doctors discovered a massive brain tumor. After surgery to remove the tumor, they gave him six months to live. Twelve years later, he’s got 17 albums to his name and maintains a busy tour schedule.

In the following radio interview, David tells the story of how his cancer diagnosis completely re-oriented his life, leading him to quit his corporate career to take up the guitar he’d laid aside ten years before. At first, it was a crisis of faith, as he raised the “Why me?” question. But then, he had a sense that God was directing him to move on to a different question: “What now?” He started performing and touring – and, in the midst of it, discovered “what God can do with a guitar and a brain tumor.” At first, David admits, people treated him as a curiosity: “boy with brain tumor surviving and singing.” Those first concerts grew into a new, full-time vocation, a significant musical ministry with special appeal for cancer survivors:



Here’s a music video of his, a song called “Tucson.” I take it as a sort of anthem for cancer survivors:



This video is more of a homemade production – sound quality leaves something to be desired – but it’s a good song. It’s called “Live Forever”:

September 11, 2008 - Moment of Silence

A few moments ago, while I was getting dressed, I tuned the TV to the news, as I often do in the morning. I was greeted by silence. Dead air.

The screen showed a somber crowd of people at a public gathering in New York City: politicans behind podiums, rank upon rank of white-gloved police officers and firefighters.

Of course, I said to myself. It’s 9/11, the seventh anniversary. I was thinking of it just yesterday, but this morning I arose without giving a thought to this occasion – to the day, as Mayor Bloomberg just reminded the television audience, “our world was broken.” It was the day our lives changed forever.

I sat on the bed in silence, joining – for that single minute – all the others in so many places who are putting aside everything else in their busy lives to remember. It’s remarkable how long a minute can feel, when you’re doing nothing to fill it.

Memories diminish with time. The day the planes were cast down from the sky, I was scrambling to put together a hasty worship service, fashioning a place of refuge for the hordes who were turning to the church during that dread season of loss. One year afterwards, we were preparing for a more carefully-planned service, one that was also well-attended. Two years out, we were ringing the church bell and opening the doors for those who wished to pray. Seven years later, I confess, I had to be reminded by the television of what day it is.

It’s the way of the world. The more time intervenes, the dimmer becomes the recollection. Who remembers Armistice Day anymore, which has long since morphed into Veterans Day? Who pays more than a moment’s notice to Veterans Day, other than those who have personally lost loved ones, for whom the loss still aches?

An article on cancer in the current Newsweek puts the statistics of life and death into perspective. The passenger load of three jumbo jets a day, every day, 365 days a year: that’s how many Americans die of cancer. It’s 9/11 every day, for at least some people in our country. Our government will spend billions on homeland security to prevent another terrorist attack from happening, but still underfunds cancer research.

I’m not begrudging those dollars spent on metal detectors in airports, nor on hunting down Bin Laden. We need to do these things. Nor am I begrudging all those New Yorkers their poignant moment of silence. (Our moment of silence. It belongs to all of us.) Yet, I am led to reflect – on this bright and beautiful, yet somber day – the death of any of us before our time deserves a moment of silence.

In the words of John Donne, “Any man’s death diminishes me, for I am involved in mankind.”

September 9, 2008 - Cancer Misinformation

OK, here’s a curious news item. Someone’s done a study of misinformation about cancer, and how spurious beliefs vary according to whether a person lives in the industrialized or the developing world:

“Researchers interviewed 29,925 people in 29 countries last year to compare data on perceptions about cancer risk factors among high-, middle-, and low-income countries.

Among their findings was the fact that people in high-income countries were least likely to believe that drinking alcohol increases the risk of cancer, when, in fact, cancer risk rises as alcohol intake increases. Specifically, 42 percent of the people in the high-income countries said alcohol does not increase the risk, compared with 26 percent of those in middle-income countries and 15 percent of those in low-income countries.”

So, first-world people insist on believing, despite the evidence, that they can tipple risk-free. They also choose to believe – again, contrary to evidence – that eating a diet high in fruits and vegetables will do more to lower their cancer risk than abstaining from alcohol. It won’t. Alcohol is a far bigger risk.

First-world people also believe exposure to air pollution is more carcinogenic than drinking. It’s not.

People in middle- and low-income countries tend to take a Que Sera, Sera attitude towards cancer, believing not much can be done to treat it. Folks in wealthier countries – evidently more used to seeing baldheaded cancer survivors walking around – believe that aggressive therapy can make a difference.

Generally speaking, “people in all countries were more ready to accept that things they could not control (e.g., air pollution) were risk factors than things they could control (e.g., overweight, which is an established cancer risk factor).”

I’m still processing these observations. I don’t quite know what to make of them. Of course, it’s humbling to be reminded, once again, of how cancer treatment is pretty much the preserve of the wealthy (with “wealthy” defined according to a global standard, to include pretty much everyone in Europe and North America). In many parts of the two-thirds world, a cancer diagnosis is still pretty much a death sentence.

Yet, from Basel to Bangladesh, there’s still a lot of unreasoning fear out there when it comes to cancer. It’s a better fit for our frame of reference, somehow, to see cancer as an unstoppable force that descends with devastating randomness (caused by something like air pollution that few of us can do anything to prevent), rather than as something that can be a consequence of our own lifestyle choices.

Cancer is a great drive-in movie screen, on which we tend to project our desires as well as our fears. No wonder it can be such a hard subject to talk about.

September 7, 2008 - Living in the Future

Today, I run across a column by radio psychologist Dan Gottlieb that has a lot to say to anyone with a chronic illness – or, well, to just anyone. He’s writing about fear – about how so many of our anxieties and frustrations in life can be traced back to an underlying fear of death.

Reflecting on the “battle” language so many of us use when speaking of cancer, he observes: “Most of us battle things like this not because we are pursuing a vision of victory, but because we are terrified of what will happen if we don't fight. And what is our ultimate fear? Death.

All things living one day stop living. But we may be the only species that knows we will die. How we deal with that piece of information day to day can determine the quality of our lives.”

A little later, Dr. Gottlieb goes on to share this bit of practical wisdom:

“All fear is about the future. And when confronted with the fragility of life, it’s hard not to think about the future. When we do, however, we are at risk for living in the future. That is the real tragedy, because living in the future takes us away from the life we have today.”

“Living in the future” – is that really such a bad thing? When it comes to technology, for example, there are rewards aplenty for those who are forever scanning the horizon, scouting out the next new thing. The “early adopter” gets the iPhone, if not the worm. In the world of finance, stock analysts who can pull off the trick of living in the future – however briefly or imperfectly – rake in millions.

Yet, these are specialized cases. When it comes to everyday life, living in the future is rarely a good thing. Those of us who do so miss out on the present. And the present – as messy and chaotic as it can sometimes be – is where we live our lives.

Gottlieb continues, “Readers who are hoping for a list of practical ‘tips’ of the type we so often see in the news media may be disappointed. I can only offer one big one: Don’t spend so much of your energy pursuing the life you want or avoiding the life you fear. Have the faith to live the life you have - and live it fully, with great love and gratitude.”

Amen.

Now, here's a little something from the recent "Stand Up 2 Cancer" TV special. Just enjoy it - in the present:

September 3, 2008 - Another New Cocktail

No, I’m not talking about some concoction served in an umbrella glass, under a buzzing neon light. I’m talking about a new combination of anti-cancer drugs that may help certain lymphoma patients.

“Novel Clinical Study For Lymphoma Patients Beginning,” reads the headline of yesterday’s internet news article. It heralds a clinical study, investigating whether patients receiving a new combination of two chemotherapy drugs will do better than those receiving more conventional treatments. The drugs are for patients with diffuse large B-cell or mantle-cell lymphoma. Diffuse large B-cell was the aggressive type of cancer I had, which has (fortunately) not come back since my R-CHOP chemo treatments in the spring of 2006. If it ever comes back, I could potentially benefit from tossing back a few of these new cocktails (well, not literally tossing them back; they’d be delivered through IV tubes).

The drugs being studied are bortezomib, marketed as Velcade, and vorinostat, marketed as Zolinza. (Where DO they come up with these crazy names?) Bortezomib – a comparative old-timer in the world of cancer drugs – has been around since 1995, and vorinostat is a newer drug, approved by the FDA for treatment of another type of lymphoma (cutaneous T-cell) less than two years ago.

These types of clinical trials go on all the time. This one’s a phase II trial, one of the riskier varieties. As I understand it, phase I trials are truly experimental – only the sickest patients get these drugs, the unfortunate souls for whom nothing else is working. Based on experiments with laboratory animals (the proverbial “guinea pigs,” whether or not they actually belong to that species), the scientists are reasonably sure the drug will help humans, but they can’t be absolutely sure. So, they pick a few people who have no other choices, give them the new drug, then sit back and watch what happens.

If the experimental subjects do better than expected, the scientists move on to phase II. They’re still working with a relatively small group of desperately ill patients, but this time they’re trying to figure out the dosage. In this stage, patients sometimes experience severe side effects, as the experts try to get the dosage right. Neither phase I nor phase II trials are a walk in the park for the volunteers who participate in them – although they’re usually willing enough to take the risk, because they have few other alternatives.

If the signs continue to be good, the researchers move on to a stage III trial. By now, they know the drug works, but they need hard data comparing it to other drugs. This is the sort of trial that involves thousands of patients all over the country (or even the world). It includes randomization – there is a randomly-selected control group of patients, who are given some other, more established drug instead of the one being studied. (In cancer trials, placebos are rarely given to the control group, for ethical reasons.)

If the new drug makes it through this third gate, it will probably receive FDA approval. The company then dispatches its eager sales force out to doctors’ offices, with their free pens and sandwich trays for the office staff. After the drug is out there for a little while, stage IV trials follow, as the benefits and side-effects of the treatment protocols are studied further, over time.

Speaking as a cancer survivor, it’s encouraging to read of new developments like these. I’m glad the pharmaceutical researchers are out there, dripping fluids from eyedroppers into petri dishes, or whatever they do. It’s a long road, from the genesis of an idea in a laboratory to a chemo nurse hanging a bag of the stuff on an IV pole. Drug companies have to put up millions of bucks before they see a penny of profits, and for every drug that makes it into production, many more die on the vine, never making it out of stages I or II.

Will I ever receive this yet-unnamed drug combo? Who’s to say? It just goes to show how dynamic and uncertain the field of cancer treatment continues to be. I’m in a slow, watch-and-wait mode right now. It’s remarkable – and scary – to think that the drug that could help me one day may still be in the early theoretical stages, years away from production.

We live with that uncertainty, and with that hope.