Friday, September 29, 2006

September 29, 2006 - Access Point

Last night, I was up at New Brunswick Theological Seminary, for my weekly teaching stint (I teach a course called “Presbyterian Studies,” for Presbyterian ministerial candidates enrolled in that Reformed Church in America seminary). During the chapel service, the worship leader invited the assembled faculty and students to offer sentence prayers – brief, spoken intercessions.

Silently, I listened to the concerns raised by others. They were exactly the sort of items you’d expect to hear, in a seminary chapel service. There were general intercessions – for peace in the world, justice for the oppressed, safety for soldiers in Iraq, insight in academic study. There were also some specific prayer requests: first names of people, along with brief explanations of their circumstances. Someone had just lost a spouse, someone else was unemployed, still another person was hospitalized.

Then, someone offered prayer for “people who have cancer.” Suddenly, the service got very, very personal for me. I’d been letting the words of the prayers wash over me, with a kind of detached interest. When I heard those words, I found myself in a different place. I wasn’t just praying. I was being prayed for.

The man who voiced this concern surely wasn’t thinking of me, in particular. I’m an adjunct professor – a visiting firefighter, who teaches his class, then goes home. That makes me a virtual stranger to most of the seminary community. Of those who do know me, only a few are aware of my recent medical history. The man who offered this prayer for cancer patients probably started out with someone altogether different in mind, and kindly extended his concern to embrace others.

I was touched, all the same. I smiled to myself, realizing that the people to my left and right probably had no idea they were praying for me, as they joined their thoughts to those of the speaker.

We have a wireless access point in our house, allowing various computers to log onto the Internet. Anyone who turns on a laptop, within the limited range of that antenna, can make use of the connection. Because the device includes a built-in hardware firewall, I haven’t felt the need to enable its password-protection feature. I figure that anyone who should happen to power on a laptop in a car outside our house is welcome to ramp onto the information superhighway, toll-free. If whole cities, like Philadelphia, are equipping their business districts with free, wireless Internet access, then why shouldn’t I offer a similar gift to the universe?

I was on the receiving end of a similar kind of generosity last night, in the seminary chapel. That sentence prayer was like a wireless access point. I found myself in range, so I connected.

Reflecting on the experience of prayer, Roberta Bondi likens it to family ties:

“We often have a kind of notion, as part of this highfalutin’, noble picture of ourselves as pray-ers, that when we pray we need to be completely attentive and we need to be fully engaged and we need to be concentrating and we need to be focused. But the fact is, if prayer is our end of a relationship with God, that's not the way we are with the people we love a large portion of the time. We simply are in their presence. We're going about our lives at the same time in each other's presence, aware and sustained by each other, but not much more than that… However we are, however we think we ought to be in prayer, the fact is we just need to show up and do the best we can do. It's like being in a family.”

It just goes to show – when we are so bold as to offer up a prayer to God, we never know who may be in range.

Monday, September 25, 2006

September 25, 2006 - Need to Know

The other day, Claire told me of a woman she knows, whose husband has cancer. Over the past year or so, the two of them have compared notes, sharing how their respective spouses have been doing.

Evidently, this man and I have different styles of coping with the disease. Claire describes my style as “researching it to death.” Her friend’s husband is different, a bit less direct. “Tell me what I need to know,” he typically says to his doctor. “The rest I don’t want to hear about.”

I’ve been thinking about Claire’s “researching it to death” description, ever since. It’s true. I’ll admit it: I have responded to the news of my diagnosis and treatment by trying to unearth as much information as I possibly could. Sometimes, to the point of obsession.

It’s not that I distrust the doctors. I’m not trying to second-guess anyone. At each decision-point in the treatment process, I’ve followed the doctors’ recommendations exactly. On the one occasion when there was a difference of opinion (between Dr. Lerner and Dr. Portlock over the advisability of post-chemo radiation treatments), I stepped back and let the two of them duke it out. Dr. Portlock – an internationally-known lymphoma specialist in a research hospital – had seniority, so her opinion prevailed. It never occurred to me to try to put my finger on the scale, to try to influence the outcome.

I may have learned some medical jargon along the way, but I’m under no illusion that I’ve achieved the slightest ability to weigh the pros and cons of treatment decisions myself. “Do not try this at home” is a rule that works for me.

Nor do I have much patience with alternative therapies – rumors about the latest vitamin craze, that sort of thing. Yes, cancer is a complex and mysterious disease, but there are also vast amounts of human and material resources being devoted to research. Should I value some whispered product endorsement from some non-medical person, over the results of cancer trials from places like Memorial Sloan-Kettering and the University of Pennsylvania Hospitals? I don’t think so!

But still, I’ll continue to read, to web-surf, to attend conferences, so I may find out all I can about this fast-changing field.

I have a need to know, you see.

Monday, September 18, 2006

September 18, 2006 - Hope on the Medical-Research Front

Today, in my e-mail inbox, I come across a link to an article about a new research development in the treatment of Non-Hodgkin Lymphoma. Evidently, there’s a new drug currently in clinical trials, called Epratuzumab. Used in combination with Rituximab (trade name, Rituxan – the drug I got along with my chemotherapy), Epratuzumab shows promise in the treatment of relapsed NHL patients.

I’m in remission now, and I hope that I’ll stay there for a very long time. Yet, from time to time the thought occurs that one day I could go for a scan, and the cancer will have come back. I’ve done a little reading, to find out what would likely be the next step, when and if it does.

I don’t think I’d receive the CHOP chemo cocktail I received before. Most patients, I’m told, only receive that combination once in a lifetime (in fact, I read somewhere that 8 doses of CHOP is the lifetime maximum; I received 6). With relapsed cases, the doctors typically try something different.

There’s always the possibility of stem-cell transplant, as well – which is basically a method that allows patients to be treated with very harsh chemotherapy drugs. These chemo drugs are so powerful that they completely destroy the immune system, and therefore – without some intervention – would indirectly kill the patient, who would succumb to another illness or infection. Accompanied by a stem-cell transplant, though (using either the patient’s own, self-donated stem cells, or cells from a compatible donor), these heavy-duty drugs can be made safe to use. The doctors can allow the chemo drugs to go ahead and take down the immune system, because they can then use the transplanted stem cells to re-create it.

Another option is radioimmunotherapy – most notably two drugs, Bexxar and Zevalin, that actually carry tiny, radioactive particles directly to cancerous cells.

I suppose there could also be the possibility of radiation therapy – although that’s not usually indicated as a primary treatment for NHL. If I get radiation, it would probably be as a follow-up to some other treatment.

Any one of those options – another round of chemotherapy, radioimmunotherapy, radiation, or megadose chemotherapy with a stem-cell transplant – is a daunting prospect. It’s encouraging to hear of another monoclonal antibody treatment, similar to Rituxan, that shows real promise.

The world of NHL treatment is changing constantly. However far into the future my remission may last, when and if I do relapse, I will face an expanded array of treatment options. And that’s encouraging.

September 17, 2006 - Seafood Festival

Today, I walk a short distance down the street to the Point Pleasant Beach Seafood Festival – the biggest civic event of the year in our little town. The two busiest streets in our downtown business district are closed off, and lined with various booths offering craft items and non-profit organization literature. There's an entertainment stage as well, but by far the biggest draw is the booths sponsored by local seafood restaurants – of which, as a beachfront resort community, we've got many.

The closed-off streets are packed with people: so many, it's hard to walk. In a typical year, something like 40,000 people attend the Seafood Festival. This year's not so typical, because the event was postponed one day, due to the threat of rain (only a threat, as it turned out; yesterday was gorgeous, and would have been a perfect Festival day). The event got bumped to today, a Sunday – which caused its own set of problems for us in the churches.

It didn't occur to anyone from the Chamber of Commerce or the Borough Council to tell us, in the churches, that the rain-date starting time had been changed. (In past rain-out years, the Festival's started at noon – which was tough, but not impossible, for the churches.) This year's 10:00 start time took us by surprise. Knowing that, after 9:00 a.m. or so, there would be no parking places to be had within many blocks of the church, we made the decision late on Friday to cancel our 11:00 Sunday service. The 9:00 service was sparsely attended - by people who either live close enough to walk, or who got here just ahead of the onslaught.

Today, I'm feeling pretty angry at our municipal leaders, for blatantly overlooking the churches in their planning. In my sermon, I preach about the declining influence of churches in American life. There's a whole movement today, known as the emergent church movement, that shrugs and says "you can't fight City Hall" on this one: that churches had better just get used to the fact that the old era of civic religion in America is ended, and that our culture is careening headlong into secularism. We Christians had better start seeing ourselves, the emergent-church gurus warn, in a new way – before it's too late. The twenty-first century American church is not so much a valued community institution, as a mission outpost.

In the old days of civic religion – back when the Seafood Festival was known as “Big Sea Day” – elected officials wouldn’t have dreamed of closing the streets in front of churches on a Sunday morning, without someone at least picking up the phone and telling the churches what they proposed to do. Now, they just do it – with no apology and no explanation.

(Historical photo: "Big Sea Day," ancestor of the Seafood Festival)

Still, it's a beautiful day – so, after worship, I change into casual clothes and go walking into town. I rub elbows with a lot of people I know – which is no surprise, because we've lived here almost 16 years. Many of the people I encounter ask me how I'm feeling, or make some supportive comment like "You're looking good" (remembering, no doubt, the days when they saw the hairless me pushing a shopping cart through the supermarket, or dropping off a book at the library). With each new encounter, I repeat the news that I've just had a good 3-month checkup at the doctor's, and my scan results were good.

I realize there's a sort of time lag going on here. Close friends, family and church members have been able to observe my progress more closely. The medical news I'm sharing today feels like old news to me, but to the people I'm talking to, it's current.

I'm not complaining, of course. I'm glad they remembered to ask. A cancer diagnosis creates ripples throughout an entire community. The people who are further out from the point of impact are affected much later.

We're all connected, though. And that's a good thing.

Monday, September 11, 2006

September 11, 2006 - The Terror: Five Years Later

Today's the five-year anniversary of the 9/11 attacks. Yesterday, I shared my recollections of that day with the congregation in a sermon, "9/11: What Have We Learned?." Here's an excerpt:

I was sitting in the kitchen over at the manse, finishing my second cup of coffee and reading the newspaper, when Claire called from work. "Turn on the TV," she said. "I just heard something about an airplane hitting the World Trade Center."

I turned on the news, and there it was: those familiar images that are now burned deeply into our consciousness. Not long after, there came the pictures of the second airplane hitting the other tower. I had just spoken with Dottie and Diane, over in the church office, a few minutes before. They had heard the news on the radio. I called them back and said, "Come on over here. I think you need to see this. Let the answering machine take any calls. This is too important."

It seemed like the right thing to do. History was unfolding, minute by minute, and it didn't seem right for anyone not to see it. And besides – if truth be told – I didn't especially want to watch any more of it alone. It seemed like one of those times when people ought to be together.

A few minutes after Dottie and Diane came over, the three of us saw it: the collapse of the first tower, and then the second. Who would have thought such mighty works of engineering could come tumbling down so quickly, each floor collapsing onto the next? The sight was emotionally riveting, and absolutely horrifying, at the same time.

For some reason, that line from the first Star Wars movie came to my mind. Darth Vader has just deployed his dreadful weapon, the Death Star, to destroy the planet Alderan. Across the galaxy, Obi-Wan Kenobi sits up and takes notice. "I felt a great disturbance in the force," he says, "as if millions of souls cried out in terror and were suddenly silenced."

The human lives snuffed out in the twin towers were numbered in the thousands rather than the millions – but still, as we sat there and watched the towers fall, we could almost hear the cries of agony.

Late that afternoon, after Claire had returned home, she and I went down to the beach. We felt drawn there. Looking northward, into Monmouth County and beyond, we could see that smudge of smoke on the distant horizon: a dark plume, slanting to the eastward, as the prevailing winds slowly blew it out to sea.

The terrorist attacks of September 11, 2001 were one of those events – like the assassination of President Kennedy, the first steps of Neil Armstrong onto the moon, and a handful of others – that call forth a vivid recollection of exactly what we were doing when the news came through. There are few events that touch so many lives, that are truly a common experience for people of our culture. Yesterday, I knew – as I stood in the pulpit and shared the details of what I was doing that morning five years before – that everyone in that room over the age of 9 or 10 had gone through something similar.

How different that is from the events I have been narrating in this diary! Yes, there is a sizeable community of cancer survivors, but we are a minority (and may we ever remain so!). Write about the thoughts and emotions connected with watching the twin towers fall, though, and everyone has a similar story. Among the many thoughts that come to mind is an awareness of our mortality.

This morning, I glance through a special insert that came in yesterday's newspaper, containing photos and brief biographies of dozens and dozens of people from central New Jersey who died in the attacks. Most of them were beginning an ordinary work day, in offices on the upper floors of the twin towers. Some were rescue workers, who courageously entered the buildings, passing so many others who were streaming out. A few were there by accident – like one man, a telephone installer, who had the singularly bad fortune of being called in to install equipment in the Cantor Fitzgerald offices. Had his work order been dated a day earlier or a day later, he would have survived.

Five years ago today, I didn’t know I had cancer. Had I gone for an ultrasound on September 11, 2001, I don’t know if the technician would have detected anything out of the ordinary – although it’s possible the tumor was slowly growing inside me, even then. The question is academic – because, whatever genetic switch is encoded into my DNA, causing certain lymphocytes to go malignant, it was already there. As I watched the live newscast of the collapse of the towers and wondered, along with everyone else, what it’s like to die, who knows if the switch had already been thrown?

So many things in life, we just don't know about. And so, we live by faith. The opening line of the Brief Statement of Faith of the Presbyterian Church (U.S.A.) – which I shared with the congregation in my sermon yesterday – says it all:

"In life and in death, we belong to God."

Thursday, September 07, 2006

September 6, 2006 - Still in Remission

Late this afternoon, Claire and I drive over to Dr. Lerner’s office. After my port flush and blood draw, we take our seats in one of the small examining-rooms. Dr. Lerner comes in a few minutes later, opens my ever-thickening file, and begins poring over the reports from my PET and CT scans. He read the initial PET-scan results a few days ago, he tells us, but – due to the Labor Day holiday – he didn’t receive the reports from Friday’s CT scans until today.

Dr. Lerner confirms what I surmised earlier, from reading the PET-scan narrative report: I’m still in remission. The mass in my abdomen is still there, but it hasn’t changed in size since my previous scans (which were at the end of May). As for the nodule on the lung, it doesn’t appear to be of any concern – probably just some scarring from an earlier infection.

After viewing the abdominal mass on the second set of CT scans, the radiologist evidently went back and examined the PET-scan films in greater detail, then issued a supplementary report. That report does say there’s a possibility of some metabolic activity within what’s left of the mass, but it’s a very sketchy sort of conclusion. This is not uncommon with PET-scan results, Dr. Lerner tells us. He doesn’t think it’s at all significant, because the mass – which by now is likely only scar tissue – has not grown in size.

Is the radiologist genuinely concerned, after taking this second look at the test results? Or is he just being cagey – covering himself, legally, in the event that some future scan reveals a recurrence of cancer? For all the lab-coated practitioners of this modern alchemy would have us believe their conclusions are 100% objective, it turns out there’s still a certain amount of guesswork to it, after all. Is radiology, in some sense, an art as well as a science?

The bottom line, of course, is that this is very good news – although Dr. Lerner delivers it with the dispassionate objectivity of a true scientist. That’s OK with me. I don’t need a trumpet fanfare or a balloon drop. I sense Dr. Lerner to be, for all his soft-spoken precision and careful choice of words, a kind and caring man. He’s certainly done well by my case so far, and I’m grateful to him for that.

On my way out, the receptionist schedules me for another appointment, the week after Thanksgiving. I’m supposed to call the office a couple of weeks before then, to schedule another PET/CT fusion scan, and a series of regular CT scans. I’ll be back in the meantime, for my monthly port flush, but those will be quick, in-and-out visits – the oncological equivalent of getting an oil change.

As Claire and I leave the office, we walk arm-in-arm out to the car. Although this was the outcome we’d expected, it still feels good to have the weight lifted, once again. Three months from now, we’ll be going through this uncertainty all over again – as surely we will continue to do, for some considerable time to come. But that’s a worry for another day...

Monday, September 04, 2006

September 4, 2006 - Cancer and Wholeness

One of the most frustrating aspects of civilization's war against terrorism is that the adversaries are so hard to find. Something similar is true of cancer: it's only in certain circumstances that the enemy is clearly defined, and can be efficiently removed with a "surgical strike." More often than not, malignant cells linger, even after the scalpel's intervention. Grueling "therapies" – chemical, radiological – put the patient through hell, for a still-inconclusive outcome. But that should come as no surprise. "War is hell," said the infamous General Sherman, recalling the plumes of black smoke rising over the rooftops of Atlanta.

Yet, there's something about the military metaphor, applied to cancer, that doesn't quite fit. Cancerous cells are not some foreign invader: a band of terrorist commandos who slip across the border on forged passports, to blow themselves up, and us along with them. Cancer cells spring from our own loins. They arise from out of our own bodies, the result of genetic mutations that, despite science's best efforts, are still only dimly understood. If the terrorist metaphor applies at all, it's Timothy McVeigh and the Federal Building in Oklahoma City, not al-Qaeda and 9/11. We cancer survivors have met the enemy, and he is us.

I've quoted before from a little book of devotions called Now That I Have Cancer, I Am Whole, by John Robert McFarland (Andrews and McMeel, 1993). McFarland is a Methodist minister and colon-cancer survivor. Suzanne, a minister-colleague of mine and a friend of McFarland's, gave the book to me not long after I was diagnosed. Here's what he has to say about cancer and wholeness:

"In trying to beat cancer... I am competing against myself. Cancer is a part of me, so if I win, I also lose. Getting whole, getting well, has to do with oneness. It's not a matter of right or wrong, victory or defeat, not even life or death. It is life vs. nonlife. If I experience wholeness in life, death is not a defeat. If I experience fragmentation in life, then life is not a victory.

The goal, the sense of purpose, is not so much getting cured, beating the cancer, continuing to live. The goal is wholeness itself, being a full and complete person. That is adequate purpose. In fact, it is the only worthy purpose of life. I don't have to make some great achievement, do some mighty work, to justify my existence. Being a whole person is the purpose for our being.

There is no single road to wellness. Getting well and being well is taking an interlocking network of highways that lead to the one, central junction of wholeness"
(p. 48).

I’ve been thinking about my PET Scan report, that – as I read the medical jargon, anyway – indicates no sign of malignancy. That’s good news, something to celebrate. Yet, I also know, from my reading about Non-Hodgkin Lymphoma, that oncologists generally prefer to use the word “remission,” rather than “cure,” when talking about this kind of cancer.

It takes millions of malignant cells to create even the tiniest “hot spot” on the PET Scan film. That means hundreds of thousands of those cells could still be holed up in some dark, Tora-Bora cave within my body, subsisting below the radar of even the most sophisticated medical test – and the doctors know it. Even if the chemotherapy drugs and the Rituxan have wiped out every last malignant cell in my body, there’s nothing to stop some normal cell from going through the same mutation, starting the process all over again. If lymphoma’s plan of attack is coded into my DNA – as is entirely possible, and even likely – then who can prevent its return? There’s not a lot of closure, in treating NHL.

Evidently, that's true of some other forms of cancer, as well, as McFarland observes:

"Cure is an end-result concept. Wellness, health, healing, wholeness – these are process, each-moment-at-a-time concepts. I don't just want to be cured, to reach the end of one road. I want to be whole for each moment of all my life, whether my days are few or many" (p. 49).

I’m beginning to realize that this is the road map for my future. It’s always been the road map – indeed, it is for all of us – but the cancer experience reveals it with particular clarity.

You can’t wage war against cancer, any more than you can wage war against terrorism (as our nation is slowly learning). There are certain battles you can fight, but there’s no final resolution. The solution lies somewhere else. It lies within ourselves – where, by the grace of God, we may one day receive the wisdom to find it.

Friday, September 01, 2006

September 1, 2006 - An Encouraging-Sounding Report

This afternoon I go to Atlantic Medical Imaging for more scans – CT scans of the abdomen and pelvis, to be exact. Joanne from Dr. Lerner’s office phoned me yesterday, to say the doctor wants CT scans, in addition to the PET/CT fusion. She explained that the amount of detail visible on the fusion scan is not as great as he prefers to see.

Joanne managed to get the scan scheduled for the very next day – today – and got immediate pre-certification from my medical insurance. Because I’ve just had a CT scan of the lung on Monday (along the with PET/CT fusion), I don’t need to have that one re-done. Just the abdomen and pelvis.

Today’s scans go smoothly enough – drink the contrast fluid ahead of time, get poked in the arm for the IV contrast infusion, lie down on the table with arms over my head, hold my breath when the disembodied machine-voice tells me to – the usual.

As I’m talking to Kathy, the technician, I explain about the call from Dr. Lerner’s office, and how it happens that I’ve come in so soon again. I ask her if it’s a common thing for doctors to want a CT scan in addition to the PET/CT fusion, and she says it is. Some doctors will wait to see the report from the fusion scan before deciding they want the supplementary CT scans, while others routinely order both at the same time.

Reading between the lines of my question, Kathy tells me the narrative report from Monday’s scans is in my file, and offers to make me a copy of it. Sitting in my car in the parking lot after the test is finished, I wade through the medical jargon, and come upon these words:

“There is no abnormal hypermetabolic activity in the neck, skull base, abdomen, pelvis or upper thighs.” Towards the end, in the summary, the pathologist repeats, “No hypermetabolic activity to suggest pathologic lymphadenopathy in the neck, chest, abdomen or pelvis.”

Although I’ll have to wait for Dr. Lerner to confirm this when I see him this coming Wednesday afternoon, this sounds like good news to me.

As for the spot on the lung, there’s still something there, but it appears to be a bit smaller than whatever it was that showed up in May. It also appears to be of a non-cancerous nature.

From the narrative report of this past Monday’s CT scan:

“The centimeter sized nodule of interest is seen in the right middle lobe on the prior study. On today’s study, this area has an appearance more suggestive of scarring and is not hypermetabolic. This area also appears smaller on today’s study.... There is a triangular area of interstitial disease in a small portion of the superior segment of the right lower lobe... There is an area of scarring in the right middle lung. Just posterior to this, there is a tiny, triangle-appearing nodule approximately 2 mm also likely reflecting scarring. I do not see a centimeter sized nodule as was described on the prior reports within the right middle lobe.”

From the summary: “On PET/CT scan, also performed today, there is an area of hypermetabolic activity in the superior segment of the right lower lung corresponding to an area of interstitial lung disease on the chest CT. I would favor this to reflect an inflammatory or infectious etiology...”

Bottom line? As I read the medical jargon – and, again, I’ll have to wait to hear from Dr. Lerner for the final word – it looks like the lung abnormalities are scar tissue, from some past or present lung infection of as-yet-unknown origin.

It will be a lot easier to wait for Wednesday’s appointment, having read the encouraging-sounding PET/CT fusion report.