Friday, August 31, 2007

August 31, 2007 - Another Risk Factor for Cancer

Today's New York Times contains an article reporting on a dramatic change of strategy for the American Cancer Society. They've decided to dedicate $15 million – their entire advertising budget for next year – to a series of ads dramatizing the plight of the uninsured.

Some are charging that this strategy is too political – although the Society's leadership is quick to point out that the ads are non-partisan, and don't call for any single solution to the crisis of the uninsured (such as universal health care coverage). They are, however, going to be spending heavily for ads in states with early Presidential primaries, in an effort to influence the direction of the debate.

I can see why the Society would want to do this. They spend millions every year encouraging people to get early-screening tests for cancer. These tests save lives, no doubt about it. Yet, the uninsured are much less likely to go for these tests. Who's going to go out and get a colonoscopy for routine cancer screening, if it means paying the full cost of $3,000 or more out of pocket? People without medical insurance are highly unlikely to have this kind of money just sitting in a bank account somewhere (if they did, they would probably have used it to buy insurance).

"I believe, if we don't fix the health care system, that lack of access will be a bigger cancer killer than tobacco," says John R. Seffrin, chief executive of the Cancer Society. "The ultimate control of cancer is as much a public policy issue as it is a medical and scientific issue."

Here are some eye-opening statistics from the article:

• According to the U.S. Census, the number and percentage of people in the United States without health insurance is on the rise. Last year, 47 million people – 15.8 percent of the population – lacked medical insurance. That's one in seven people who are at a higher risk for cancer, because they probably won't be going for screenings.

• One out of every 10 cancer patients is uninsured. I can't imagine trying to pursue the costly treatments for lymphoma without insurance. It's hard enough affording them with insurance! It's also hard enough managing the paperwork, keeping track of appointments, and all the rest. If I had to do that as a charity-care patient – filling out endless forms for financial assistance, and having to endure long waits for scarce appointments – obtaining treatment would seem like a full-time job in itself.

• One out of every four families affected by cancer will be impoverished as a result of the disease – including one out of every five who do have medical insurance.

• Uninsured breast cancer patients are more than twice as likely to have their cancer diagnosed in late stages as those with private insurance. The same is true of those suffering from cancers of the larynx and mouth.

• This advertising expense, large as it is, is just a drop in the bucket, compared to commercial advertisers. The American Cancer Society's planned expenditure of $15 million on this campaign in the next year is just a quarter of what just one auto-insurance company, Geico, is spending on its "caveman" series of ads.

People are literally dying because they lack health insurance. When is the nation going to wake up and realize that – voting only for politicians who have a concrete plan for doing something about it?

Wednesday, August 29, 2007

August 29, 2007 - My Friendly Neighborhood Case Manager

Today I speak by telephone with Kim, an R.N. who's employed by Care Allies (formerly Intracorp) – a company contracted by my medical insurer, the Presbyterian Church (U.S.A.) Board of Pensions (or perhaps by their contracted insurance company, Highmark Blue Cross/Blue Shield), to do case management for cancer patients. I've spoken with Kim a couple of times before, as she introduced herself to me and explained that she'll be available as a resource person, as I make treatment decisions. She works for Care Allies' Comprehensive Oncology Program.

Kim is helpful and professional, and seems very knowledgeable indeed about NHL and its treatment. She explains that, until recently, she worked for the CIGNA insurance company, managing care for stem-cell transplant patients (CIGNA evidently owns Care Allies, and contracts out their case-management services to other insurance companies – so, she still works indirectly for CIGNA). I'm favorably impressed with Kim. She has a warm and friendly way about her, and seems genuinely interested in me as a person – but, I'm under no illusions as to what her job is. It's the insurance company that writes her paycheck. They want her to become personally familiar with my treatment plan, so she can head off any costly treatments that may be less than medically necessary.

Kim and I are going to be traveling together through the gray area of medical insurance coverage – that gray area that has to do with the phrase "medically necessary." If Dr. Lerner, Dr. Portlock, or some other cancer specialist recommends a particular treatment, from now on the insurance company is going to subject that plan to a greater level of scrutiny. The insurance company has been doing that all along, to some extent – but now they have flagged my case as one requiring the dedicated, personal attention of one of their employees. With regard to my case, Kim is the insurance company's human face (or, I should say, their human voice – I've never met her in person). She and I are allies – up to a point. I sense, from her demeanor, that she'd genuinely like to see me get better – but, at the end of the day, her job is going to be to recommend more affordable alternatives, if such are available.

Here's what the Care Allies website says about the role of the case manager ("you," in this case, refers to the insurance company contracting for their services, rather than to the patient):

"How it works for you.

Our case managers reach out to the patient to provide assistance and help providers deliver positive results. Through personal interaction, our case managers can address the patient's needs, care environment and available alternatives to help optimize outcomes. With years of experience and knowledge, we can apply an integrated approach across the entire continuum of care.

Empowering your employees through health advocacy.

When employees know they have an advocate to help them deal with a difficult health condition and assist with navigating the complexities of the health care system, we believe they're likely to be more satisfied with their benefits program – and get well faster. CareAllies offers services administered by Intracorp that have been awarded accreditation from URAC, an independent organization whose mission is to help ensure consistent quality care for payors and consumers.

We Make a Difference.

As our customers fight the pressures of health care inflation, CareAllies' Case management services can continue to add value through experience, expertise and efficiency. We are uniquely equipped to link case management with its other health and productivity management services. The result is appropriate actions that can help ensure early intervention, and positive health outcomes for employees, and increased savings for employers."

"Positive health outcomes" – we all want to see more of those. But, positive for whom? For me? For the Presbyterian Church (U.S.A.)? For the insurance company? Suddenly, as I drive further down the treatment highway, more and more people seem to be showing up in the car.

I'm sure there are ways Kim will be genuinely helpful, in guiding me through the bureaucratic maze of insurance review and approvals. She's already starting to do that, offering to check for me on whether Hackensack University Medical Center – where I'm going on September 10th, for a consultation with Dr. Michele Donato about testing for a possible future stem-cell transplant – is inside or outside the insurance company's network. If I'm going to get a "no" from the insurance company regarding some future treatment, I suppose it would be more congenial to hear it personally from a specialist who knows my case, than by pulling some computer-printed letter out of a window envelope. Yet, a "no" is a no – even if it's the more congenial variety. I'm hoping I won't be hearing that word, from Kim or from anyone else. But, time will tell.

An image comes to mind: of Humphrey Bogart, Walter Huston and Tim Holt in the classic Western, Treasure of the Sierra Madre. Those three grizzled prospectors find themselves thrown together as traveling companions, each of them owning a partial share of a gold mine. On the surface, they're friends and allies – but always there's a certain tension underneath, because of the gold. Will they protect one another's interests? Or, will one of them betray the others, to gain a larger share of the gold?

In the movie, their partnership does not end well. I hope Kim, my doctors and I will do much better.

Tuesday, August 28, 2007

Sign Petition or Call to Help Needy Children

My August 21 blog entry, "The Least Among Us," focused on an action by the executive branch of our government to adjust family income qualifications, so fewer children would qualify for free medical insurance provided by the various states.

Members of the clergy who are so inclined can sign an electronic petition to Congress and President Bush, addressing the President's threatened veto of renewed funding for this program. You can do so by clicking HERE.

Those who are not members of the clergy can visit, where you'll find information about a toll-free phone number (1-866-633-6432) that you can call, to send a message to your congressional representatives on this issue.

I received this from an organization called Faithful America, which is affiliated with the National Council of Churches.

Here's a description of the purpose behind the petition:

"As people of faith we have a sacred obligation to protect our children, including making sure they have health coverage. The State Children's Health Insurance Program (known as SCHIP) has been a blessing to millions of children who would otherwise be uninsured. But SCHIP ends on September 30 and President Bush has threatened to veto legislation to renew the program. PICO invites clergy to add their names to a petition to Congress and President Bush calling for SCHIP to be renewed with adequate funding to reach five million uninsured low-income children. Please also encourage members of your congregation to call PICO's toll free Cover all Children Legislative Hotline at 1-866-633-6432 to make their voices heard on this critical issue for the faith community. For more information visit"

Thank you.

Thursday, August 23, 2007

August 23, 2007 - Wishing You Were Somehow Here Again

Yesterday evening was a moment I’ve been both joyfully anticipating – and also dreading – for many weeks. At 10:30 p.m., on a breezy, Southern California summer night, I held tightly to our daughter, Ania, bidding her farewell as she began her freshman year of college.

More than a year ago, when Ania told us she’d like to consider California colleges, it made the most sense for Claire to accompany her on the West Coast tour. It was October, and my chemotherapy was only a few months behind me. The church had been more than generous with medical leave, and I didn’t want to ask for more time. Of course, there was also the matter of airfare. I had to content myself with stories and photos.

In the spring, after the dust of the application process had settled, Chapman University in Orange, California emerged as the favored campus. We mutually agreed that I’d be the one to fly out here with Ania and help her move in.

We’ve been through this sort of leavetaking before, with Benjamin. He began his college studies at Drew University, a couple hours’ drive from home, so we knew we’d see him for the occasional weekend and for holidays. In Ania’s case, the cost of a cross-country commute – paid for by two ministers’ salaries plus some indispensable help from extended family – made it clear she’ll only be coming home for Christmas. That adds some extra angst to the farewell.

Thinking back to our leavetaking with Ben, I remember an overwhelming surge of emotion that took me quite by surprise, as we said our goodbyes in the parking lot. Sure, I’d expected a wistful moment or two. I knew I’d miss him terribly. But I figured I had the feelings under control.

So, at the end of Ben’s move-in day at Drew, I wasn’t prepared for the tears that flooded my eyes. I’m not sure how much our self-reliant firstborn was aware of what was going on inside his dad. Clearly, he (like Ania) was more than ready to strike out on his own, and felt the beckoning of the future more strongly than the drag of the past – but I just about dissolved inside during that final hug. Even so, following in the tradition of my dour Scottish and Swedish ancestors – whether or not the Swedes have a word for “dour,” they’re just as accomplished at the stiff-upper-lip routine – I kept those unexpectedly turbulent emotions under control. I turned away from him before I wiped my eyes.

This time is different: and not because I love Ania any more than Benjamin. Part of it’s the fact that Ania’s the last one to leave the nest. Part of it’s the male-female thing – the dynamic that leads families to choose that treacly “Daddy’s Little Girl” song for their daughters’ wedding receptions (something I promise you, Ania, never to do). Part of it’s the sheer distance involved, and the realization that visits will be few and far between. Part of it’s the fact that I’ve been through this once before, and am better prepared. What I was feeling last night, though, is more than the sum of all these factors. There’s also the cancer. It’s made me a softie.

Chemotherapy takes your hair, but hair grows back. It saps your energy, but that comes back, too. In a way that’s hard to describe, those drugs also dissolve some of the barriers we construct in life, that we use to hold our emotions in check. Those don’t come back so easily.

That night in December of 2005, when Claire and I sat at the kitchen table, and tried to lay out for Ben and Ania as coolly and accurately as we could the news of my diagnosis, I could feel those barriers starting to crumble. We were all feeling scared about what the future might hold. The months that followed looked like they’d be an ordeal – and they were – but we got through them, and with a favorable outcome.

In the intervening months, I haven’t felt the need to build the emotional retaining-walls back up again. What’s the point? With or without cancer, life’s too short.

Here in California, on that night fragrant with flowers, Ania and I both knew what we had to do. Throughout the past couple of days, the university’s orientation speakers had politely but firmly made it clear when was the moment for goodbyes. In the parental briefings, they warned us against being “helicopter parents”– making too-frequent visits to campus, or using the cell phone and the internet to hover over our kids, making it hard for them to break free. As we walked away from the closing ceremony, student volunteers were even holding out boxes of Kleenex. (Those Chapman people think of everything.)

When Ania and I joined in that final embrace, we were both sobbing. She found this remarkable college on her own, surfing the internet. She lobbied us gently but effectively, until we agreed to the cross-country college tour, and, later, to allow her to accept the offer of admission. I’m more certain, now, than ever that she’s made the right choice. Last night, I told her so. On that level, I’m deeply happy – for her, if not for me. When the moment of the actual parting came, it was, as the Bard says, “such sweet sorrow.”

My eyes were streaming as I walked down the steps to the underground parking garage. This morning, I have some down time in the hotel, before driving the rental car to the Orange County airport for the long flight home.

A little while ago, I was standing in the shower, thinking over the events of the past couple of days. One of the things Ania and I did yesterday was to walk into the university library, where she checked out a book of music she needs for a vocal audition this Friday. It was a snap decision: she hadn’t realized there’s an audition for her voice lessons, so she had to quickly locate sheet music for a song she knows, to hand to the accompanist. She chose something from Andrew Lloyd Webber’s Phantom of the Opera. As I shampoo my hair, I find myself humming the tune: “Wishing You Were Somehow Here Again.”

I realize what it is I’m humming. Of all the songs she could have chosen, why did it have to be that one? The tears flow, all over again. This morning, as I awoke, I thought I was getting over this. Evidently not.

I’ll admit it. I’m a softie now. Sorry, ancestors, if that dishonors our dour Northern European traditions. I’m a cancer survivor, and I love my daughter more than words can say.

Tuesday, August 21, 2007

August 21, 2007 - The Least Among Us

I just read these words, that open a news article in today's New York Times:

"The Bush administration, continuing its fight to stop states from expanding the popular Children’s Health Insurance Program, has adopted new standards that would make it much more difficult for New York, California and others to extend coverage to children in middle-income families.

Administration officials outlined the new standards in a letter sent to state health officials on Friday evening, in the middle of a monthlong Congressional recess. In interviews, they said the changes were intended to return the Children’s Health Insurance Program to its original focus on low-income children and to make sure the program did not become a substitute for private health coverage."

The last part of the sentence is the ringer: "and to make sure the program did not become a substitute for private health coverage." The insurance lobby, in other words, has convinced the Administration to protect their turf, and the Administration has compliantly agreed.

I'm going to cut to the chase, here, about this recent move by the White House, without using diplomatic language: This is evil. As citizens, we need to oppose it.

Here in New Jersey, we have a well-regarded, taxpayer-funded program called New Jersey FamilyCare, that enables low-income - and even some lower-middle-income - families to get free, basic medical coverage for their children. It's funded, in large part, by Federal money, passed down to the State. I've referred many families to it.

Kids aren't expensive to insure. Most don't have high medical expenses. Yet, before FamilyCare came along, affordable, stand-alone insurance for kids was hard to find. The insurance companies weren't much interested in offering it, and many cash-strapped families tended not to buy it (even if they could find it), because they didn't like to even think of their kids getting a catastrophic illness. What we ended up with was a whole lot of bake sales and benefit spaghetti dinners, to help such-and-such a family, whose child had brain cancer or cystic fibrosis, avoid losing their home. (Believe me, you have to sell a whole lot of cupcakes to keep a family from losing their home - and, that sort of thing diverts a community's energy and resources away from other projects, like helping families that were poor to begin with get into their own home in the first place.)

Setting compassion aside for a moment, offering programs like New Jersey FamilyCare is smart for another reason, one that even the most jaded capitalist can appreciate. Widespread medical care for children means fewer long-term, disabling conditions that will only cost society in the long run, once these unfortunate kids grow up to become wards of the state.

The people who run New Jersey FamilyCare don't think much of the new guidelines:

"'We are horrified at the new federal policy,' said Ann Clemency Kohler, deputy commissioner of human services in New Jersey. 'It will cause havoc with our program and could jeopardize coverage for thousands of children.'"

The Administration has accomplished this move by fiat, without consulting Congress. The Times article says there's a chance Congress may override it. Let's hope they do.

"And the king will answer them, 'Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me.'"

- Matthew 25:40

Saturday, August 18, 2007

August 18, 2007 - Cathedral Thinking

The other day, I was reading a Newsweek article about global warming. The writer, Fareed Zakaria, is interviewing James E. Rogers, an executive of Duke Energy – one of the nation's largest coal producers. Zakaria presents Rogers as something of an environmentalist, even though he works for a company that's the third-largest producer of carbon emissions in the United States.

Rogers makes the point that, until we fully develop alternative energy sources – which is going to take many decades – we're still going to need coal. Yet, we need to burn it responsibly, doing everything possible to limit harmful emissions. We need a big-picture view, while long-term solutions are being developed. We need something he calls "cathedral thinking."

And what is cathedral thinking? It's the sort of thinking practiced by the builders of the great medieval cathedrals. Those who laid the foundations of those imposing structures knew they would never live to see the tops of the spires. Construction took longer than a human lifetime.

Yet, still, those stonemasons got up and went to work every morning. They did so because they were cathedral thinkers, practicing the sort of vision that goes beyond the next week, the next year, even the next century.

In our chronically impatient culture, cathedral thinking is a tough sell. If we can't have something tomorrow, or even later today, then (we think) what good is it?

I just ordered a computer printer for our daughter, Ania’s dorm room, arranging to pick it up at the Orange, California location of a national electronics chain. I’ll be out there on Monday, to help her move in. If I were there now, I could have had it a lot sooner. The company advertises on their website that you can put in an online order, drive down to your local store, and if they don't have it waiting for you in 24 minutes, they'll give you a $25 gift card. Imagine: 24 minutes! Talk about instant gratification...

The watch-and-wait regimen I'm now enduring for treatment of my NHL is one that arises out of a sort of cathedral thinking. It doesn't extend beyond a human lifetime, of course, but it does extend longer than the "Hurry up and make me better, Doc" frame of reference most of us are inclined to use. Cathedral thinking, NHL-style, looks at the disease from the standpoint of decades, not days. It counts the number of treatment arrows remaining in the quiver, before notching one onto the bowstring. It uses time as a therapeutic tool, not merely as a way of chronicling impatience.

The other day, Jean, a friend and ministerial colleague of mine, gave me a CD by a Christian singer named Greg Long, an artist I hadn't heard of before. She wanted me to listen to a particular track called, "In the Waiting," that she said reminded her of some things I've written in this blog about the watch-and-wait approach. Here are some lines from the song:

The gift nobody longs for, still it comes
And somehow leaves us stronger
When it's gone away

I try and pray for Your will to be done
But I confess it's never fast enough for me

It seems
the hardest part is waiting on You
When what I really want
Is just to see Your hand move

I want a peace beyond my understanding
I want to feel it fall like rain
In the middle of my hurting
I want to feel Your arms as they surround me
And let me know that it's okay
To be here in this place
Resting in the peace that only comes
In the waiting...."

(Greg Long Now, Word Entertainment, 2001.)

"In the waiting" is where it all happens – whether it is the construction of a cathedral, or the healing of a disease.

Thursday, August 16, 2007

August 16, 2007 - Take a Cancer Quiz

OK, here's a little brain-teaser for the dog days of August. A recent article tells of a survey commissioned by the American Cancer Society, that sought to capture Americans' viewpoints about cancer. Here are a few questions from the survey. They're True/False questions, the easiest kind.

See how you do...

1. The risk of dying of cancer is increasing. TRUE or FALSE?

2. Living in a polluted city is a greater risk for lung cancer than smoking a pack of cigarettes a day. TRUE or FALSE?

3. Electronic devices, like cell phones, can cause cancer. TRUE or FALSE?

4. Personal hygiene products, like shampoo, deodorant, and antiperspirants, can cause cancer. TRUE or FALSE?

5. Underwire bras can cause breast cancer. TRUE or FALSE?

Ready for the answers?

Scroll down...


Well, the correct answer to all those questions is: "FALSE." Here are the percentages of Americans who agreed with each of the statements:

1. The risk of dying of cancer in the U.S. is increasing – 67.7%.

2. Smog is riskier than cigarette smoke – 38.7%.

3. Cell phones cause cancer – 29.7%.

4. Personal hygiene products cause cancer – 14.7%

5. Underwire bras cause breast cancer – 6.2%.

(Source: "Many Americans Believe Unsubstantiated Claims About Cancer, Survey Finds," in Science Daily, July 27, 2007.)

The most surprising misconception – and the one most widely held, by a whopping two-thirds of the general public – is that the risk of dying from cancer is increasing. It's not. In fact, just the opposite is true: "the age-standardized cancer death rate has been decreasing since the early 1990s, and the 5-year relative survival rate for all cancers combined has improved steadily over the last 30 years." People with cancer are being treated more successfully – and are living longer – than ever before.

In 1971, President Nixon declared a national "War on Cancer." We, as a society, are far from declaring "V-C Day" and dancing in the streets, but the tide of battle is definitely turning in our favor. Yet, public perceptions – for quite irrational reasons – are still fixated on cancer as a burgeoning risk.

More than one in three Americans also believes walking around in smoggy Los Angeles is more likely to cause cancer than smoking twenty cigarettes a day. Air pollution's not good for anyone, to be sure, but – laid side by side with the proven cancer risk of tobacco smoke – there's no comparison. That one has a lot to do with that powerful psychological force called "denial." (I wonder how many who fall within that 38.7% are smokers?)

The remaining false statements in the survey – cell phones, deodorant and underwire bras causing cancer – are prominently featured in notorious urban-legend e-mails, that circulate from person to person. It's remarkable how persistent these untruths can be.

I know that, on the cell-phone question in particular – where nearly a third of respondents answered yes – some may come back and say, "Well, how do you know cell phones DON'T cause cancer?"

The answer is, "I don't – because it's notoriously difficult to prove a negative." Sure, some evidence could emerge, down the road, that cell phones cause cancer – but you could make the same prediction about mocha lattes, digital cameras, salad in pre-sealed plastic pouches, or any other relatively new product you'd care to name. Cancer warnings about microwave ovens were all over the place in the years right after that technology was introduced – with nary a shred of scientific evidence – but we rarely hear such claims anymore. There's a certain segment of the population that cynically greets every new technology with the knee-jerk response, "Yeah, and I'll bet it causes cancer." It doesn't take long for that water-cooler quip to take on an air of authority – and so, an urban legend is born.

There are a lot of impressive scientific resources directed toward curing various cancers, and may of them are showing positive results. I rejoice that, of all the different types of cancer, NHL is one that has been the focus of many recent breakthroughs – with more likely to be announced soon.

Back in the World War 2 era, they used to have a saying: "Loose lips sink ships." We can all do our part to aid the "war effort," by trying to make sure the statements we hear (and pass on to others) are based on fact, not rumor.

Monday, August 13, 2007

August 13, 2007 - Shooting Stars

“Wait without hope
For hope would be hope of the wrong thing; wait without love
For love would be love of the wrong thing; there is yet faith,
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought.
So the darkness shall be light and the stillness the dancing.”

– T.S. Eliot, from “East Coker”

Early this morning, just after midnight, Claire and I drive down the street and walk out onto the beach. We’re looking for shooting stars. This is supposed to be the height of the annual Perseid meteor showers. We sit there for about 15 minutes, enjoying the cool breeze, listening to the sounds of the surf. It’s not exactly dark enough for optimal viewing – the bright lights of the boardwalk amusements are behind us, and off in the direction of the sea are a couple of spotlights from not-so-distant fishing boats.

It feels good to be here, all the same. Like many people who live in this beachfront community, we tend to avoid the beach in the summer – too crowded. There’s also something that irks me about having to pay for admission to the beach (as is common all up and down the Jersey Shore, but rare in most other parts of the country). It seems, somehow, sacreligious to cough up six or seven simoleons for the privilege of sitting on the sand and looking at God’s ocean. The people in other parts of the country seem to have it right, while we New Jerseyans just don’t get it. (Just wait till the next hurricane – then we’ll learn who really owns the beach.)

In the early hours of the morning, though, none of that matters. Admission is free.

We sit there, leaning back on our the palms of our hands, regarding the firmament. We see nary a shooting star. Maybe it’s the lights or maybe it’s the slight cloud cover, but this doesn’t appear to be the right time. When you’re looking for shooting stars, the trick is to keep your eyes on the sky, but to focus on nothing in particular. If you’re lucky, you’ll be rewarded with an ever-so-brief trail of luminous stardust, and your eyes will immediately track over to that spot.

Eventually, we conclude this is a night of fruitless waiting, so we go home and go to bed.

I think my watch-and-wait approach to lymphoma is going to be a lot like that. What I’m watching and waiting for is not, of course, anything so delightful as a shooting star. I’m waiting for emerging signs of cancer. Yet, as this passage from Dr. Elizabeth Adler’s Living With Lymphoma reminds me, I’m also waiting for a cure:

“If indolent disease is asymptomatic, many oncologists practice a watch-and wait (or watchful waiting) approach. You don’t start treatment right away; the doctor simply checks up on you at intervals to see if the disease is progressing. Studies have indicated that people who are treated with a watch-and-wait approach, who begin therapy only when treatment becomes necessary, survive as long as people who start aggressive therapy as soon as their disease is uncovered.

Some people find it tremendously nerve-wracking to sit back and do nothing while waiting to see if (when) their cancer progresses. If you feel that way and your doctor has recommended a watch-and-wait approach, you may find it more appealing to think of this time as a reprieve, while you ‘watch and wait’ for the discovery of an effective and nontoxic cure. A cure seems close enough that I have no doubt one will become available before some of us who are newly diagnosed with indolent disease are ready to start therapy.”

– Elizabeth M. Adler, Living With Lymphoma (Johns Hopkins, 2005), p. 99.

As the poet says, “the faith and the love and the hope are all in the waiting.” Until now, my approach to the disease has been characterized by energetic activity: reading, studying, obtaining second opinions, going for treatment. Now, I’m regarding a wide-open sky, with no idea when something significant is going to emerge.

In one sense, I can go about “business as usual.” I don’t feel bad. My illness isn’t preventing me from doing anything I’d like to do. Yet, in another sense, the mere thought of cancer is as much an impediment as the disease itself. Waiting is never easy.

“I wait for the Lord, my soul waits,
and in his word I hope;
my soul waits for the Lord
more than those who watch for the morning,
more than those who watch for the morning.”

– Psalm 130:5-6

Sunday, August 12, 2007

August 12, 2007 - Explaining Watch-and-Wait

This morning in the worship service, I preach about the Christian symbolism in Harry Potter and the Deathly Hallows (a topic I’ve briefly mentioned in this blog, on July 27th).

After the sermon, as I read aloud the list of names for intercessory prayer, I include my own name at the end of the list: briefly explaining that I’ve had my consultation up at Memorial Sloan-Kettering, that my cancer is back but is slow-moving, and that the consensus of the doctors is to watch and wait.

Afterwards, I have to explain to a number of people what I meant by that, because it sounds so counter-intuitive.

“You mean you’re not getting treated?”

“No, I am getting treated. Watch-and-wait is my treatment for now. The doctor’s going to monitor me carefully, and as soon as my swollen lymph nodes get big enough, or I develop symptoms – whichever comes first – we’ll start treatment. Sooner, later – it doesn’t much matter when. The treatment will be no more effective later than it would be if we started tomorrow.”

Lymphoma is significantly different from many other forms of cancer. With most cancers, there’s great anxiety about the tumors metastasizing – spreading to other parts of the body. With other cancers, the lymphatic system is often the highway by which malignant cells make their dangerous journey. If a woman has breast cancer, for example, the oncologist keeps a close watch on “sentinel lymph nodes” nearby, and calls on a surgeon to remove any that appear cancerous. Once that kind of cancer gets into the lymphatic system – whose network of nodes and vessels functions as a sort of superhighway within the body – it can take any one of a number of exit ramps, establishing residence in other bodily organs.

With lymphoma, there’s not much concern about the cancer jumping to other parts of the body. Lymphoma doesn’t metastasize to the lungs or the brain, for example. It could move into the bone marrow (in which case my lymphoma would be labeled stage IV, rather than stage III), but – according to my understanding, anyway – that’s about as far as it can go. It can spread more extensively within the lymphatic system, creating more and more enlarged lymph nodes – not to mention bulky tumors, which are clusters of cancerous lymph nodes. Depending on where they’re located, such tumors can create ill effects by physically pressing on nerves, blood vessels, or organs. Yet, lymphoma’s not likely to show up in the form of lung cancer, nor brain cancer, nor any of other scary varieties you may care to mention.

The sort of watching and waiting my doctors and I are now practicing is not a sort of passive resignation. Nor is it an abdication of responsibility. It’s just what we have to do right now, and for the foreseeable future.

Wednesday, August 08, 2007

August 8, 2007 - The Art of Medicine

This afternoon, as planned, I go to see Dr. Lerner. As it turns out, he hasn’t heard from Dr. Portlock yet, but I’m able to summarize for him the things she told me yesterday. (He’s sure she’ll send him a note eventually, detailing her findings.)

This time, the two are on the same page. Dr. Lerner says his leading recommendation – out of the 4 or 5 options he laid out for me at our last consultation – is “watch and wait.” The good doctor is quick to point out, though, that there’s no easy answer to the question of where to go next with my treatment. The fact that I first had the diffuse-mixed-large-and-small-cell type of NHL, which has since transformed into follicular NHL, puts me in a relatively small group of patients. No one has conducted any research on how best to treat people like me. Because of the multiple treatment options, any such study would be extremely complex, involving hundreds (if not thousands) of patients, and multiple treatment centers. It’s no wonder no one has undertaken it.

This, says Dr. Lerner, is an example of the old saying that medicine is an art as well as a science. Taking an educated guess as to where to go next, with a patient like me, is where the “art” part comes in.

It seems counter- intuitive that the best option, right now, is probably watch-and- wait. If you’re playing the old “Space Invaders” arcade game, when those ranks of creepy- looking monsters slowly start to descend, row upon row, you naturally want to blast as many of the pesky little critters as you can, as soon as you can. (Fail to do that, and they’ll soon be so close and so numerous, there will be no stopping them.)

Follicular lymphoma’s not like that. Dr. Lerner explains to me that – as odd as it may sound – the effectiveness of the treatment is not related to how early you start administering it. Sooner’s not necessarily better than later. If I’m not feeling any symptoms (and I’m not), he thinks we’d do just as well to wait, and be ready to start treatment the moment the disease starts to make me uncomfortable (or, as soon as subsequent scans indicate a recurrence of the aggressive variety of the disease).

To continue my Space Invaders analogy, it’s as though the little laser cannon at the bottom of the computer screen has only a limited number of shots. Each shot, though, does far more than just vaporize a single alien. Push the button once, and you lob a futuristic bug bomb right into the middle of the horde, blasting them all to kingdom come. They’ll be back before long, to recommence their slow descent – yet, when they do return, the best course of action is to watch and wait while they slowly fill up the screen, then zap ‘em again with something else, just before they get to you.

It’s a nerve-wracking way to go about it (especially with that Nazis-on-parade drumbeat as the incessant background music), but it does display a certain elegant logic.

Dr. Lerner tells me about one follicular NHL patient of his, whom he’s been seeing for over 20 years. The man is now in his 70s, and has swollen lymph nodes all through his body. This guy’s never received any treatment other than watch-and-wait. As long as he’s feeling good, there’s no point in doing anything else.

I mention to Dr. Lerner that Dr. Portlock had spoken of an allogeneic stem cell transplant as possibly being in my future, once the disease progresses far enough. He offers to give me a referral to the Hackensack University Medical Center here in New Jersey, a major cancer center that’s got an excellent reputation for stem-cell transplants. Dr. Lerner says that, for stem-cell transplants, he prefers Hackensack to Memorial Sloan-Kettering. He gives me the names of Dr. André Goy and Dr. Michele Donato from the Hackensack staff, both of whom are experts in this field.

Even though we’re not contemplating a stem-cell transplant in the immediate future, he thinks it would be a good idea for me to go there soon, for a consultation and some testing. The hospital could mail testing kits to my two brothers, Jim and Dave. Each of them would take a few saliva samples using cotton swabs, and mail them back to Hackensack. This would determine whether either one is a compatible stem-cell donor. Dr. Lerner says there’s a 25% chance that a sibling donor will be compatible. Because I have two brothers, that ups my odds to 50%.

If that doesn’t work out, all is not lost: there’s a bone-marrow donor registry that could very well include a compatible tissue donor – although a sibling is always the best, if a good match can be found. Failing that, I could donate my own stem cells in advance (an autologous stem-cell transplant), which would be put in cold storage before the mega-chemotherapy begins – although this is the least-desired choice, because there’s an outside chance that some free-floating lymphoma cells could make it into the self-donation sample.

Sure, I say to him, go ahead and have one of your office staff set up an appointment for me. We may as well keep all the options open.

Here’s hoping Drs. Lerner and Portlock are as good artists as they are scientists.

Tuesday, August 07, 2007

August 7, 2007 - The Whites of Their Eyes

“Don’t fire until you see the whites of their eyes.” The saying is traditionally attributed to American General William Prescott, at the Battle of Bunker Hill in 1775.

Much as I resist military metaphors when it comes to cancer treatment, that phrase seems apt to me today, after this morning’s second-opinion consultation with Dr. Carol Portlock at Memorial Sloan-Kettering Cancer Center in New York City.

Dr. Portlock says the Memorial Sloan-Kettering pathologist who examined my biopsy slides confirmed that what I’m dealing with is indolent lymphoma – small cells, with the CD-10 protein marker on their outer surface (there’s no sign of the large, CD-20 cells I had previously). My swollen lymph nodes are few in number, and they’re quite small. For that reason, Dr. Portlock is going to recommend to Dr. Lerner a strategy of watchful waiting.

What I’ve experienced, she tells me, is something called “retrograde transformation.” While the larger, aggressive cells were indeed there previously – primarily in the large mass in my abdomen – they seem to have disappeared after treatment, leaving me with indolent (follicular) lymphoma.

There’s a part of me that distrusts the watchful waiting strategy – that wants to just get on with it, and push back against the cancer, hard and fast. Yet, just as there was a certain strategic wisdom in the Continental Army marksmen holding their musket fire until they couldn't miss, so there’s wisdom in waiting to recommence treatment of my lymphoma. Not every cancer treatment is repeatable. It’s best to save the ones we have for when they’re truly needed.

With lymphoma, the doctors have a certain number of arrows in their quiver – more than with many cancers – but, that number is still limited. We can’t just fire them off wildly. We’ve got to make them count.

“Is there any downside to watchful waiting?” I ask.

“Well, sometimes the patient disappears,” Dr. Portlock admits. When I ask what she means by that, she explains that some watchful-waiting patients get overconfident, and – in the absence of obvious symptoms – stop going to the doctor. Then, the silently-advancing recurrence sneaks up on them. By the time they do get back to the doctor, it’s advanced far enough to be truly dangerous. The “watchful” adjective is a crucial part of the formula, in other words. Vigilance is the key.

“You won’t have that problem with me,” I assure her. I have every intention of continuing to go back for scans, at whatever intervals Dr. Lerner recommends.

I ask her how long I can reasonably expect it to take, before my cancer has advanced far enough to require treatment.

Maybe a year or two, she replies. Maybe longer. Dr. Portlock makes a circle with her thumb and forefinger, that looks to me to be about the size of a small grape. This is about how big the malignant lymph nodes should be before we start treatment, she says. We should keep monitoring them using CT scans, at whatever interval Dr. Lerner recommends. (CT scans, she explains, are better than PET scans in this instance. We already know what the enlarged lymph nodes are. We’ve just got to keep measuring how big they are. CT scans are better suited to this purpose.)

When the lymph nodes do get large enough to treat, I ask, what treatment is most likely? Dr. Portlock says treatment with Rituxan only (not chemo, this time) is a possibility. This drug is often effective against follicular lymphoma, and has few side effects.

She also talks about an allogeneic stem cell transplant (that’s the variety in which the stem cells are donated by another person, ideally a sibling). Such a treatment is “potentially curative,” she says, but with the swollen lymph nodes still so small, it’s too early to move in that direction.

I leave feeling upbeat. This does seem to be pretty good news (although, as I’ve said, there’s an impatient part of me that just wants to get on with it).

After a quick lunch in the hospital cafeteria, and after calling Claire to fill her in on the news, I decide to take advantage of having a free afternoon in Manhattan. I walk the five or six blocks over to the nearby Frick Collection, and spend a couple of hours looking at Old Masters paintings. I’ve never been to that museum before, and am impressed by it: it’s smaller and more manageable than the Metropolitan Museum, and contains a collection of very famous artworks indeed: displayed in the home of the collector himself, much as he would have wanted them to be viewed.

A subway ride and a train ride later, it’s back home again.

Sunday, August 05, 2007

August 5, 2007 - Just My Luck

Lots of people have been following the news reports about the tragic collapse of the Interstate 35 bridge over the Mississippi River, in Minneapolis. In today’s sermon – my first time back in the pulpit after a month’s vacation – I talk about the disaster.

What’s interested me about this sad event – quite apart from the dreadful human cost – is the element of luck. Some drivers made a last-minute decision to cross that particular bridge, rather than another, and found themselves on the falling roadway. Others were unaccountably delayed, and missed being in that wrong place at the wrong time. The strong implication is that luck – good or bad – played a role.

My scripture text is Romans 8:28, “...all things work together for good for those who love God, who are called according to his purpose.” Lots of people read this verse – or, at least, its first phrase – as a promise of good luck, bestowed on those who believe. Is Paul actually saying that the Lord Almighty, dealing at the divine blackjack table, slips faithful believers a low card now and again?

Not at all. “All things work together for good” doesn’t mean good things will always happen to people of faith (or that we’ll even beat the law of averages). The key to understanding the verse is in the second part, which speaks of “God’s purpose.” We are all part of that divine purpose. It surrounds us. It's the universe we inhabit, the air we breathe, the life we live.

In the sermon, I cite the great British preacher, Leslie Weatherhead. He invites us to think of God’s purpose as though it were a great river, rushing to the sea. Within that river, as with all rivers at the spring flood, there are scattered bits of debris. Logs and branches float and spin upon the surface. Rocks and pebbles are borne along beneath, scouring the stream-bed, bumping up against each other, sometimes causing damage. Does God, who made the river and charts its course, have intimate knowledge of every bit of flotsam and jetsam – and, do the random collisions of these pieces of debris make the least difference to the river’s larger purpose?

Of course they don’t. Such things are the accidents of life. They cause us much consternation at times – but, in the larger view, they’re part of the greater movement for good.

That’s how I see it, anyway. Others may see it differently. When it comes to cancer and other dread diseases, I never imagined I’d get a free pass.

The thing Christian faith does promise is that when we do, finally, emerge from the waters – wet or dry, exhausted or exhilarated, bedraggled or bewildered or bemused – there will be a welcome awaiting us on that riverbank. Arms will embrace us, gentle voices will comfort us, love will be all around us. Then, the words of Revelation, chapter 21, will ring true:

“See, the home of God is among mortals.
He will dwell with them;
they will be his peoples,
and God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.”
[Revelation 21:3-4]

It’s not that experiences such as mourning and crying and pain have no reality, no true existence – as the good citizens of Minneapolis will readily attest, as they survey the twisted wreckage of their bridge. No, the tears are all too real. Yet, the tears are not forever.

Saturday, August 04, 2007

August 4, 2007 - "Good News" Is Relative

Late yesterday afternoon, I received a voice mail message from one of Dr. Lerner’s office staff, passing along a message about my test results. “It’s good news,” said the cheery voice in the recorded message. “The doctor asked me to tell you that your bone marrow biopsy came out clear, and your PET scan report was also good.”

This wasn’t nearly enough information for me, so I phoned back. After a positive needle biopsy, I didn’t think the PET scan report could be unambiguously good.

It wasn’t. The person who’d left me the message had already gone for the day, but one of the nurses pulled my file and took a look at the narrative report, while I was still on the phone. Yes, the bone marrow biopsy report is good news, she said – no sign of cancer there. As for the PET scan – as I suspected – the news is a bit more ambiguous.

I asked her to fax me the actual report, and this morning I take a look at it. Here’s the summary portion, in the usual esoteric medical jargon:

“Enlarged hypermetabolic mediastinal prevascular lymph node is highly suggestive of malignancy/lymphoma.

There has been some enlargement of a right supraclavicular lymph node still abnormally hypermetabolic and is suggestive of residual lymphoma.

Spiculated mesenteric mass appears stable morphologically compared with multiple examinations dating back to 9/1/06. The metabolic activity is slightly increased in this region. I would still favor this to be related to previously treated lymphoma. This should be followed by PET/CT scan to exclude any current or residual disease.

Asymmetric focal hypermetabolic activity in the posterior right submandibular gland and in the anterior medial right parotid gland is noted and could be further evaluated by MRI. No discrete mass is seen on CT.

Previous enlarged hypermetabolic right submandibular lymph node has decreased in size and no longer demonstrates abnormal metabolic activity.

Stable circumscribed small liver lesions probably cysts although too small to characterize. Continued followup is recommended.”

“Hypermetabolic” is a word that occurs repeatedly, which is no surprise. What a PET scan does is measure the body’s metabolism of a radioactive sugar solution that’s injected into the bloodstream ahead of time. That radioactive tracer solution gets gobbled up by rapidly growing cancer cells. Any large concentration of sugar-craving cells lights up on the scan pictures as a “hot spot” that could indicate cancer.

Looking up some words in an online medical dictionary, and relying on my memory for others, I come up with this rough translation (remember, of course, that I'm not medically trained, so take it for what it's worth):

There’s an enlarged lymph node in the thoracic cavity of my chest, behind the breastbone but in front of my lungs, that looks cancerous.

A lymph node by the right collarbone has gotten a bit larger since the last scan, and shows signs of returning lymphoma.

The shrunken remains of my abdominal mass haven’t changed in size or appearance, compared to any of my previous, post-chemo scans, although there are signs of possible metabolic activity there. Better keep an eye on this area with future scans, to make sure this isn’t a recurrence of cancer.

A couple salivary glands on the right side of my face are sucking up more of the sugar solution than they should, although there’s no discernible mass in this area. These could be further checked by an MRI scan.

The previously enlarged lymph node by my right jaw appears to have shrunk, and is showing no abnormal metabolic activity.

There are some lesions on my liver that are probably just cysts, but should be monitored in the future, just to make sure.

What Dr. Lerner may have meant by “good news” in the PET scan report is that things haven’t changed a whole lot since my last scan. The lymph node by my collarbone (the one that was biopsied) has gotten a little bigger. The abnormality by my jaw has shrunk in size, and doesn’t look too worrisome. The enlarged lymph node in my chest definitely looks like a recurrence of lymphoma.

“Good news” is a relative term. It’s looking more and more like I’ve got some recurring, indolent lymphoma – the slow-moving variety. It’s not aggressive, and that’s good news – but, it’s still cancer.

I’ll cheerfully accept whatever good news they’re willing to dish out. In the meantime, I’ll wait for the full story after I see Dr. Portlock at Memorial Sloan-Kettering on Tuesday.