Sunday, April 30, 2006

April 30, 2006 - Lymphomathon

A full day today – two worship services, followed by our annual Celebration of Companion Animals (what some churches call “Blessing of the Animals”), then the Lymphomathon fund-raising walk, benefitting the Lymphoma Research Foundation.

As Claire, Ania and I arrive at the G. Harold Antrim Elementary School for the Lymphomathon, our first reaction is, “Where did all these people come from?” It’s gratifying to see so many walkers who have given their time to be here. Dana and Tom, the organizers of this event, have done a wonderful job of getting the word out. The turnout is very good indeed. Some walkers are church members, others are kids from the school, and there are a fair number of people from the larger community as well.

As we all line up to start the walk, Claire, Ania and I take our place at the front (I guess that makes me the grand marshal or something). I walk with the crowd for one turn around the track, then take a seat in the bleachers and concentrate on taking pictures. Claire and Ania finish the whole 12 laps, as do most of the walkers (though no one’s really keeping strict score).

It’s a lighthearted, party atmosphere. The evening is bright but cool, spirits are high, and there’s an upbeat feel to the festivities. There’s a good range of ages – everybody from young kids to retired people, though older kids and teenagers form the nucleus.

I meet Nancy, president of the Central Jersey chapter of the Lymphoma Research Foundation, and her husband, who have driven over an hour to be here tonight. They’re planning a much larger walk near Trenton in about a week, and our local event is considered an offshoot of that one. Nancy’s a lymphoma survivor herself, who’s doing well about four years after completing her treatments. It’s good to talk with her and compare notes about our experiences.

We had envisioned this to be a nighttime event, but by the time it really gets dark, most walkers are already finished. We didn’t want to start it any later on a school night, but that means only the stragglers appreciate the full effect of the luminaria Dana and her helpers have carefully arrayed on the visitors’ bleachers. They’re in a pattern spelling out the word “HOPE.”

As we’re packing things up afterwards, Dana tells me we raised over $2,800 tonight, and that some more gifts will be coming in over the next few days. That should easily put us over $3,000 – not bad at all for a small, local event that was pulled together on short notice, with minimal publicity.

“Hope” is the right word. It makes me hopeful that so many people care enough – not only about me, but also about others whose lives cancer has touched – to come out and walk. I’m very aware that recent research developments are responsible for Rituxan – the drug that’s making such a difference in my treatment – as well as other revolutionary treatments like stem-cell replacement and the new vaccine therapies, which I may need someday. Fund-raisers like this one make future research breakthroughs possible.

Thank you to everyone who helped – either by walking or by contributing!

Saturday, April 29, 2006

April 28, 2006 - Spectator

This morning I go for my first actual physical therapy appointment. The exercises the staff lays out for me do not seem strenuous, in a cardiovascular sense. They’re more focused on range of motion – stretching and that sort of thing.

They have me begin with some hamstring-stretching exercises up against a wall, then have me spend seven minutes on a seated step-machine – which is something like a stationary bike that works the arms as well. After that, I stand between a set of parallel bars and move each of my legs back and forth: back, front and side-to-side, in turn. Following that, it’s onto a reclined exercise board, on which I do some squats, pushing myself and the board up and down along its track. Finally, I lie down on a table, on my back, while Marcia, my therapist for today, extends each of my legs upward and holds them for a number of seconds – another stretching exercise.

All this makes me feel more tired than I would have predicted. It doesn’t take much to get me out of breath these days, and it seems that even the stretching exercises use up more oxygen than I would have expected. But I’m not exhausted by any means.

It’s a beautiful day, as a matter of fact, so I buy myself a cup of decaf coffee and drive over to the Inlet. I happen to have my digital camera with me, so I take photos of the two boats I see: one, a commercial fishing boat headed back into port, and the second a Coast Guard rescue boat going out to sea – on a training mission, no doubt.

The Inlet is one of those places where it’s easy to be a spectator. Sit there long enough, and you’re sure to see a boat go by. This time of year there are just a few, although on a summer weekend it’s a constant parade. I’m far more interested, myself, in the working boats – the fishing boats, the Coast Guard vessels – than the ubiquitous cabin cruisers with their sport-fishing poles. Whatever sort of boat it is, though, the Inlet is one of those places where there’s a sensation for the spectator that the world is slowly passing you by.

Sometimes I feel that way, as a cancer patient. I’m not so deeply engaged, these days, in the activities that in any other season of life would have kept me complaining of how little time I have. These days, there’s plenty of time – at least for things that aren’t mentally or physically strenuous. I’m not so sick that I’m detached from my former life, nor do I feel well enough to throw myself into all the things I used to do. Even if I did feel that way, with my sixth and final chemo treatment coming up in a few days there wouldn’t be much point in going back into high gear – because I’ll be pulling back again soon enough.

So, I content myself with being a spectator. It’s not a bad place to be, for right now...

April 26, 2006 - Physical Therapy

At my last appointment, Dr. Lerner wrote me a prescription for some physical therapy, because I’ve been finding my stamina to be so low. This afternoon, I go to Life Fitness – a fitness center and physical-therapy program run by our local hospital – for an evaluation.

I’ve been a “fitness center” member of Life Fitness in the past; I used to go over there regularly in the morning, to walk the treadmill, ride the stationary bike and go through a cycle on the weight machines. As with so many good intentions, that one always went by the boards eventually. After backsliding for a few months, I’d return and re-up, beginning the whole cycle of good intentions and self-recrimination all over again.

Today is different. Today I’m going to the mysterious upstairs of the Life Fitness building. The second floor is where they do the physical therapy. I’ve been aware of friends who have gone there – most recently, Robin, our associate pastor, following her knee-replacement operation – but in all my years of walking the treadmills downstairs, I’ve never ventured up to this second level.

As I climb the stairs, I don’t feel like I belong there. Am I really sick enough to need physical therapy? I ask myself. But then I remember how easily I get out of breath these days, climbing the stairs or walking the dog, and I tell myself not to be a fool. Think of it as an opportunity – an opportunity to get back into shape.

It turns out, the physical therapists upstairs are no strangers to cancer fatigue. They take what I say about physical exhaustion and shortness of breath seriously. I may not have a new knee like Marilyn, a church member I just encountered in the waiting room. My blood pressure may be normal. I may be able to walk around without pain. But I have much less stamina when it comes to cardio-vascular activities than I did before, and it turns out there are some things we can do about that.

This first day consists of an intake interview and examination, and some stretching exercises. I learn that my range of motion, particularly with my legs, is not what it should be. Lori-Ann, my therapist, gives me some stretching exercises to do at home, on the days I don’t have therapy appointments.

If nothing else, the appointments will get me out and doing something physical: in a measured, gradual way that will keep me from getting discouraged and giving up on exercise altogether (my usual pattern). I’ve thought of myself in the past as a not-so-physically-fit person who had nothing to blame for his sad state of bodily disrepair but himself. Now I can blame the cancer, at least for these latest problems. Maybe the three-times-a-week appointments will be more of an incentive than the drop-in-whenever-you’d-like system of my past fitness center membership.

Let’s hope so, anyway.

Monday, April 24, 2006

April 23, 2006 - Leaning

“What do you think you’re doing there, Wilton, holding up the wall?” The voice of a long-ago gym teacher comes back to me, across the decades. It’s the middle of a worship service, and I’m leaning up against a wall.

Well, it’s not a wall, exactly. It’s the wooden partition that runs alongside the choir loft, that’s about as high as my shoulders. Robin and I are in the middle of presiding at a baptism, during the 11:00 Sunday service. My part in the baptismal liturgy is finished, and my back’s hurting, so I’ve taken a couple of steps backward to lean up against the partition for a minute or two.

I had a professor at Princeton Seminary who would have been appalled at that. Bill taught us in a course, misnamed “The Spoken Word in Worship,” that was really a course in practical theatrics for the worship service. Bill drummed home the message that the things we do in leading worship – the non-verbal gestures and postures – are just as important as what we say. I even taught some of his principles to seminarians myself, back when I was teaching speech at the University of Dubuque Theological Seminary in the late 1980s.

I’m sure some people can see me leaning, but I’m hoping most eyes will be focused instead on Robin as she baptizes little Emma – a truly adorable baby. Even though we’ve had a guest preacher today and my role in the two worship services is limited, I’m feeling pretty wiped-out by this point in the morning’s proceedings. I’ve been troubled by nagging back pain for the past several days – not something I’m used to, but maybe it’s some late-in-the-game chemo side-effect. If I don’t do something to take the pressure off my aching back, I think to myself, I’ll soon be grimacing in pain, and that wouldn’t look good, either.

So, I lean. I give myself permission to do so. I’ve got cancer, and if that’s what I have to do to be here, fulfilling my most public role as a worship leader, then so be it.

We cancer survivors have to give ourselves permission to lean, sometimes. We lean on our families. We lean on our doctors, nurses and other medical care-providers. We lean on our friends, even though we sometimes feel a little embarrassed to accept such generosity. Most of all, we lean on God.

“I will satisfy the weary,” says the Lord,
“and all who are faint I will replenish.”
– Jeremiah 31:25

“I can do all things through him who strengthens me.”
– Philippians 4:13

Saturday, April 22, 2006

April 22, 2006 - The Cancer Blogosphere

The word "blog" has been up-front in the national consciousness for a while now. It is, of course, a shortened form of the word "weblog." Both "blog" and "weblog" are still such new words that they cause my word-processing software to flag them as misspellings.

When the news media uses the word "blog" and others related to it – like "bloggers" and "blogosphere" – they're generally talking about political blogs. From the way some news commentators talk, you could easily get the impression that all blogs are political. Nothing could be farther from the truth. The political-punditry blogs may grab the lion's share of media attention, but in fact there are thousands upon thousands of other kinds of blogs out there – including this one you're reading.

An e-mail I recently received made me realize that my blog is part of a larger phenomenon known as "cancer blogs." The e-mail came from Dr. Deborah S. Chung, Assistant Professor in the School of Journalism and Telecommunications at the University of Kentucky. She's engaged in a research project on how blogs are changing the world of cancer treatment and care. Dr. Chung is asking cancer-blog readers to complete an online survey. (If you have 5 or 10 minutes, then why not click on the link in the sidebar to the right, and let her know what you think of this sort of resource?)

Not long after I started this blog, Tarun – a physician-in-training and a Non-Hodgkin Lymphoma survivor from India, with a cancer blog of his own – somehow found my blog and made contact with me. He and I have struck up quite an online friendship. I've since discovered several other cancer blogs, and have incorporated them into my links list (in the sidebar to the right).

I continue to be amazed at the power of this technology to shrink the planet, tear down boundaries and shine light into dark places. Cancer is tough to deal with under any circumstances, but the going is easier when there are fellow-travelers to talk with along the way.

Wednesday, April 19, 2006

April 19, 2006 - Prayed For

This afternoon I receive a phone call from John, a ministerial colleague from the local Baptist church. He has some kind words of encouragement for me, and lets me know he’s been mentioning my name weekly in his worship services, as one of their prayer concerns. I’ve heard something similar from friends who attend the local Roman Catholic church, and am aware there are other churches who have been praying for me, as well – both locally and in some far-off places. I couldn’t begin to guess how many prayer chains, prayer lists and such I must be on.

I suppose that, when pastors get sick, their names tend to float to the top of lists of this sort. It’s not that we’re any more worthy of prayers than other people; it’s just that, shall we say, there’s a certain notoriety that goes along with the position.

There’s been a lot of discussion in the media, in recent weeks, about intercessory prayer – stirred up by a multi-million-dollar research project conducted by Dr. Herbert Benson, one of the pioneers of “complementary medicine” – that movement that wants to combine hard-science-based medical treatments with softer practices like prayer and meditation. Benson is a Harvard-trained cardiologist, author of the 1975 bestseller, The Relaxation Response, and director of the Mind/Body Medical Institute. He’s made some very interesting contributions to this whole discussion over the years.

After some earlier studies that suggested there could be a scientifically-measurable outcome to intercessory prayer, Benson organized a much larger research project, and ran it according to rigorous scientific method. It included both “blind” and “non-blind” aspects: some sick people (heart-bypass patients) were told they were going to be the object of intercessory prayers, while others were not. Benson enlisted some serious pray-ers to do the work: cloistered nuns and others who could be expected to be meticulous about following through.

When everything was said and done, the study revealed that intercessory prayer had no scientifically-measurable impact on the health of those who were being prayed for (in fact, those who were aware they were being prayed for seemed to do slightly worse than the control group who had no idea).

I could have predicted the same. For all that people like Dr. Benson may wish it weren’t so, prayer just isn’t something that lends itself to scientific measurement and study. Do we really pray for utilitarian reasons, to obtain a certain, specific outcome – as, for example, when we swallow a pill prescribed for us by our doctor?

What if Benson’s study had revealed improved health for, say, five percent of those who were being prayed for? That would have been statistically significant, making headlines around the world and boosting the cause of intercessory prayer to no end. But that would have begged another, larger question: why only five percent? Why not ten? Or twenty? Would such numbers mean that God can be influenced only to a certain degree, and no more? What if the researchers had doubled the number of praying nuns – would it have doubled the positive outcome? And what about that group of heart-bypass patients in the hospital across town, whose names weren’t given to the nuns to pray for? Would such results mean God cares about those patients less?

Other, weirder questions would come up. If there had, indeed, been a measurable positive outcome, then maybe Blue Cross/Blue Shield would have to start funding monastic communities of monks and nuns – but how would they then determine which prayer practitioners were best-qualified to do the work? What sort of licensing or certification would they have to have? And how much praying would the insurance companies be willing to cover, as a “usual, customary and reasonable” expense?

I’m glad the Benson study came out as inconclusive as it did. I’m not sure we’d want to face the tricky theological and ethical questions a positive result would have raised!

As for the intercessory prayers, I’ll receive them gratefully, from any and all sources. Thanks, John – and so many others – for mentioning me so faithfully, Sunday after Sunday. Healing is ultimately a mystery, as is faith itself. In prayer, we reach out and touch the mystery – and, we trust, God touches us back, somehow, in ways our minds can’t begin to comprehend.

Tuesday, April 18, 2006

April 17, 2006 - Proof

I spend a great deal of time today checking over the galley proofs of a book I’ve edited, Hear My Voice: Preaching the Lectionary Psalms. It’s a collection of columns from the preaching journal, Emphasis, that have appeared over the past several years. I’m the author of about one-third of these; the rest were written by two other preachers, Jim Evans and Stan Purdum. The book contains a brief commentary on every Psalm that appears in the entire three-year cycle of the Revised Common Lectionary (that list of recommended scripture passages for Sunday worship that is used by many of the mainline Protestant denominations – and, on many Sundays, the Roman Catholic Church as well). There are a lot of lectionary-preaching resources out there, but not many that focus on the Psalms – so we hope it will meet a need.

Last summer, before I knew I was sick, I finished editing the book and writing the remaining sections. It’s taken the publisher, CSS Publishing, this long to get it to me for copyediting.

Proofreading is not a bad activity for the week after chemotherapy. It requires little energy and little deep thought: just low-level, rote concentration. At any other time, I would dread such a tedious task. Today, I actually welcome it. It’s something productive I can do.

Originally, galley proofs were long, thin strips of paper, the first to come off the printing press after the type had been set by hand (a “galley,” my dictionary tells me, is a metal tray that in the old days held movable type). Traditionally, this was the last opportunity to make changes in the typesetting before a book went to press. Today, my galley proofs are ordinary sheets of computer paper. When I mail the corrected pages back to the publisher in a few days, they will go not to some ink-smeared typesetter in a clattering press room, but rather to someone sitting at a computer terminal, who will quietly enter the changes using a deluxe word-processing program. When the book finally does go to press, it will be through a photographic sort of process, by which whole pages are captured at a time – rather than letter by letter, as in the old days.

The publisher sent me a guide to standard proofreading symbols, which I keep before me as I do my work. Some of these symbols I already know; others are less familiar. For some reason, they remind me of the arcane symbols that appear on my weekly blood-test results. Both are specialized languages, intelligible only to the initiated. Not being an insider in either the publishing or the medical world, I don’t feel entirely comfortable interpreting either set of symbols, but I make do.

One letter, one word, one day at a time...

Sunday, April 16, 2006

April 16, 2006 - Easter

“The Lord is risen.” Claire greets me with those words this morning, as we awake.

“He is risen indeed,” I sleepily reply.

Yes, we really do share that liturgical response with one another on Easter morning. It’s something precious that binds the two of us together: a common faith.

I go into the bathroom and lay out my five 20-mg prednisone tablets beside the sink. One by one, I swallow the bitter pills, with as large a gulp of water as I can manage. By going quickly and using plenty of water, I manage to swallow them all without gagging. I take comfort in the knowledge that these are the last of the prednisones before my next chemo treatment.

I remember reading somewhere that Roman Catholic priests are expected to celebrate Mass daily, even if they are not presiding at a worship service. Should a priest be traveling, alone in a hotel room someplace and without access to a church, he’s expected to take out a traveling kit and celebrate the Mass on his own. I have no idea whether or not this is still true – or even if it ever was – but it could be. If so, then maybe these five prednisone tablets are my daily mass. Corpus nostrum.

Claire goes across the street to the church, to assist Robin with the Easter services. I remain here, in the manse. Earlier, I fantasized about slipping into a back pew, to take in the Easter service as though I were a member of the congregation, but abandoned the idea. If past experience is any guide, on this last prednisone day I’m likely to be nervous and jittery. All I’ve wanted to do, on this day in my past chemo cycles, is lock myself in a room and stay away from people, as I weather the headaches and hot flashes. So I stay put.

Through the gauzy curtains on my study window, I watch the parade of worshipers traverse the sidewalks, on their way to church. Pastel colors predominate in this crowd: pinks and yellows and sky-blues. It’s a sunny, picture-perfect Easter day: Protestant, middle-class America on its way to church. The faithful are dressed less formally than in years past: more men in sportshirts, fewer women in festive hats. But that comes as no surprise. The old, suit-and-tie formality of Sunday worship has been on the wane for some time – to the relief of the baby boomers and the consternation of some of their elders.

This is not a perspective on Easter I typically see. Usually, I’m deep inside the church building, caught up in the last-minute rush of worship preparations. Today I’m a silent spectator. I’m not feeling sad, exactly, about missing Easter worship, for what’s probably the first time in my life. It’s more of an odd, wistful feeling. Somehow, I still do feel connected with what’s going on across the street. I’ll be back next year, I remind myself, if all goes as expected with my treatment.

After the services, Claire returns, bringing Robin with her – our only non-family guest for Polish Easter breakfast (a feast sacred to Claire’s ethnic traditions). We’ve been trying for a simpler celebration this year, but with Claire involved in a holiday meal, “simpler” is a relative term (“relative” in more ways than one, with her large family). Her brother Victor and sisters Ramona and Eva are here, along with Chelsea and Nick (Victor’s kids) and Cory and Elizabeth (Eva’s kids). Our son and daughter, Ben and Ania, are here too, of course.

I wasn’t sure I could manage to sit at the table, the way I’m feeling, but I give it a try. I manage to sit through the whole meal, and even enjoy some of the food. It’s good to be here with everyone. Later in the afternoon, Ben (a music major at Monmouth University) gives us an impromptu mini-concert of classical guitar music.

A pretty good day, all in all - better than I could have hoped for.

The Lord is risen.

He is risen indeed!

Saturday, April 15, 2006

April 15, 2006 - The Day In Between

Holy Saturday, some call it. But that’s just because it’s a day in Holy Week, in which every day gets the “Holy” moniker. Really, it’s the day in between.

The biblical narrative contains nothing about the events of this day, which are distinctly anti-climactic. The day after Jesus’ crucifixion was the Sabbath. Observant Jews were not permitted to do much of anything on that day, other than worship. On Saturday, Jesus’ body rested in the tomb, and his disheartened disciples were struggling to come to terms with the soul-shaking events they had just witnessed.

While the Gospel-writers are silent about this day, they do provide a brief prelude to it. Mark tells us that, on Friday, in the hours between Jesus’ death at 3:00 and the commencement of the Sabbath at sunset, “Joseph of Arimathea, a respected member of the council, who was also himself waiting expectantly for the kingdom of God, went boldly to Pilate and asked for the body of Jesus” (Mark 15:43). After assuring himself that Jesus was indeed dead, Pilate granted the request. Joseph “bought a linen cloth, and taking down the body, wrapped it in the linen cloth, and laid it in a tomb that had been hewn out of the rock. He then rolled a stone against the door of the tomb” (v. 46). Countless religious paintings depict the scene, which is usually called either “Descent from the Cross,” or – more clinically – “The Deposition.”

Presumably, Joseph needed some help to carry the body. All four Gospel-writers tell this story, but only John provides the name of a companion: the Pharisee, Nicodemus, who came with “about a hundred pounds of myrrh and aloes” – far more than was necessary (John 19:39). Evidently, Nicodemus, who had been so standoffish in his earlier dialogue with Jesus – the one in which Jesus told him he must be “born again” or “born from above” (John 3:3) – is so eager, now, to honor him that he shows up with an enormous sack of burial spices.

These two distinguished citizens (and perhaps several, unnamed others) remove Jesus’ body from the tomb. There it rests, throughout Holy Saturday. It is the time of vigil, of watching, of waiting.

In the wake of someone’s death, the bereaved often have important things to do on the in-between days. There are papers to sign, relatives to phone, funeral arrangements to make. Often a suit of clothing must be selected and taken to the funeral director – this person who is the modern-day counterpart of Joseph and Nicodemus. These are difficult, often heart-wrenching duties, but they must be done. There is a certain awkwardness, an unsettledness, to these in-between times.

Alan Lewis, a Scottish theologian who taught at Austin Presbyterian Theological Seminary in Texas, was writing a book on the theology of Holy Saturday when he died, prematurely, of cancer. His widow completed the book and saw it published. Here’s a selection from it:

"And now on the day after, on the boundary, with 'the King of the Jews' stripped of his absurd crown and mock purple panoply, lying stiff in the impotence of death, who can deny to human power the smug satisfaction of such sweet success? The potentates of the world have conquered that 'other' kingdom and its king, have satisfied themselves that God is power and that power is God. Until the last moment he has had his chance to prove things otherwise, to verify that there really is some divine enigma by which the vulnerability of love can mightily conquer everything, provide miraculous escape from the tightest of tight corners. But the 'Son of God' has not come down from the cross; his brand of nonresistance has, after all, proved no match for military might or the politics of fear. He has failed against the politicians and soldiers as against the priests and moralists; and beside him in the grave has been laid to rest the naive dream that the meek shall inherit the earth." – Alan E. Lewis, Between Cross and Resurrection: A Theology of Holy Saturday (Grand Rapids: Eerdmans, 2001), p. 50.

What I like about Lewis’ book is how well he captures the stark reality of Holy Saturday, and how he holds it up as a metaphor for our lives. We have seen too much of death. We are waiting for resurrection.

My whole life, these days, is a Holy Saturday. Laid low by the weakness and malaise of chemotherapy, I am in a waiting mode – waiting to get better. Tomorrow morning, as I listen to the church bells from across the street and perhaps glimpse the comings and goings of worshipers through the curtains, I will seek to celebrate the resurrection vicariously, in my own way, apart from the worshiping community.

My hope is the same as anyone else’s: hope for new life. Today I wait. Today we all wait.

Friday, April 14, 2006

April 14, 2006 - Good Friday

Today, Good Friday, I read a sermon by Rick Ufford-Chase, the elder who is serving as Moderator of our Presbyterian Church (U.S.A.) General Assembly. He preached it to a standing-room-only crowd at First Presbyterian Church, Havana, on April 2nd and posted it on his blog on April 11th. Shannan, a colleague from Monmouth Presbytery, e-mailed it to a number of us who are active in the Presbytery’s mission partnership with the Presbyterian and Reformed Church of Cuba. (You can read more about Rick's visit to Cuba by clicking on this link.)

Rick is fluent in Spanish. Before his election as Moderator, he was active in Central American mission work. One thing he said in his sermon really struck me, about the contrast between how we celebrate Lent and Easter here in the U.S.A. and how they do it in Guatemala.

Rick lived in Guatemala for a time while he was learning Spanish, and noticed that the observance of Lent is generally a much bigger deal in Central America than it is here. The focus of it all is Good Friday – which is, for the Guatemalans, a highly emotional service.

Several days later, Rick showed up for an Easter mass in a Roman Catholic cathedral, and here’s what he experienced:

“I supposed that that after all of the focus on the betrayal, trial, and crucifixion, that the service marking the resurrection on Easter Sunday morning would be significant, indeed. However, when I attended Mass at the large Cathedral on the square in Antigua that Sunday morning, I was surprised to find a service that felt fairly typical, with little celebration of the resurrection of Jesus. It made me realize that for Catholic Guatemalans, Lent was all about the pain and suffering of the crucifixion, with little or no emphasis on the empty tomb. Perhaps their focus grows out of their experience of five hundred years of conquest and close to forty years of a bloody civil war in their country.

This is a dramatic contrast to my own experience of Lent. In the church of comfort and privilege in which I grew up, there was little or no emphasis on the crucifixion, by Easter Sunday morning was a marvelous celebration! For us, Lent was primarily about the empty tomb and the resurrection, with little or no focus on the suffering experienced by Jesus in his crucifixion.”

I have lived most of my life, and currently serve, a “church of comfort and privilege” such as Rick describes. Few of us middle-class or upper-middle-class Americans think we’re wealthy or privileged – but, compared to the way most people in this world live, we are. And, true to Rick’s observation, we have a much harder time getting worshipers out to Lent and Holy Week services than we do on Easter.

Attendance on Maundy Thursday and Good Friday, in particular, has been diminishing for years. I can only conclude that the message of the cross is something most people in this culture are getting increasingly uncomfortable hearing. We fill every pew at our two services on Easter, and have to schedule an 8:00 a.m. service to accommodate the overflow. Palm Sunday’s a pretty big deal, too. But Maundy Thursday and Good Friday? Only the hard-core faithful come out to those special services.

I think it’s all part of our culture’s denial of suffering. Middle- and upper-middle-class Americans live comfortable lives, for the most part. We all have our worries, but they don’t have to do with whether or not we’ll have food to eat tomorrow, or whether the corrugated-metal roof of our shantytown dwelling will blow away in the next big storm. Tales of suffering – whether of our neighbors south of the border, or of Jesus on the cross – are something most of us would rather not hear about, thank you.

Yet such tales are a part of life, even here. They can become a part of our lives, when there’s a sudden economic reversal, or when a disease like cancer hits us or people we love. If we have no experience reflecting on suffering’s meaning before misfortune happens, it can come as an awful blow.

I would very much have liked to have been at our community Good Friday service this afternoon, even if only to sit in the pew, but I just don’t feel well enough. (Early this morning, I made a run to the supermarket for a few essentials, and came back exhausted. By the time the noon starting-time of the Good Friday service came around, I was asleep.) During the last hour or so of the service, I'm awake, with my mind very much focused on what's taking place across town at Central United Methodist Church, where Christians from across our community have gathered.

My heart resonates with the meaning of Good Friday rather intensely this year, and no surprise. I wonder what meaning Easter services will have for me this year, in absentia?

Thursday, April 13, 2006

April 13, 2006 - Maundy Thursday

It’s Maundy Thursday evening, and I’m not in church.

It’s the tradition in our church to observe this solemn occasion – the commemoration of the Last Supper – with communion, followed by a service of tenebrae. Tenebrae is an ancient church tradition in which candles are gradually extinguished as various scripture accounts of Jesus’ passion are read, leaving the sanctuary in total darkness. At the end, the worshipers depart in silence – rather difficult for a group of sociable Presbyterians, but they manage somehow. The service ends on an appropriate tone of solemnity, in preparation for Good Friday.

I’ve known ahead of time that this year’s Holy Week services – including Easter – are not going to be a possibility for me. These worship services all fall during my first week after chemotherapy, which – past experience has taught – is not a time when I have much stamina. Tonight, Claire is preaching in my stead, and helping Robin with the celebration of the Lord’s Supper. I’m sorry to miss it, because it’s one of the outstanding worship services of the year, and our Chancel Choir typically outdoes themselves with the anthems they sing.

The letter to the Hebrews reflects on Jesus’ agony in the Garden of Gethsemane – when, fearful of the pain of the cross, he prayed to God to “take this cup away from me”:

“In the days of his flesh, Jesus offered up prayers and supplications, with loud cries and tears, to the one who was able to save him from death, and he was heard because of his reverent submission. Although he was a Son, he learned obedience through what he suffered; and having been made perfect, he became the source of eternal salvation for all who obey him, having been designated by God a high priest according to the order of Melchizedek.” (Hebrews 5:7-10)

Jesus’ prayer in the Garden of Gethsemane was not answered. God did not take the cup of suffering away from him. In a similar fashion, my own prayers for good health were not answered. Yet the author of Hebrews assures us that Jesus’ prayer “was heard.” The result was that he was “made perfect” by what he suffered.

“Perfection,” here, probably means more than our ordinary understanding of the word. We generally think of it meaning “without flaw,” but there’s also another meaning to the word. Something that’s “perfect” is complete – as in the perfect tense in English, which describes an action that has been completed. If Jesus’ purpose in coming to earth was to achieve salvation for humanity by dying on the cross, then it’s indeed true that he was “made perfect” by his suffering. As the Easter hymn puts it,

“The strife is o’er, the battle done;
The victory of life is won;
The song of triumph has begun: Alleluia!

The powers of death have done their worst;
But Christ their legions hath dispersed;
Let shouts of holy joy outburst: Alleluia!”

I’ve got to trust that this ordeal I’m going through – not worth comparing to crucifixion, certainly, but it’s suffering all the same – is preparing me for something, somehow. The outcome of Jesus’ suffering, according to Hebrews, is that he was able to serve as “a high priest according to the order of Melchizedek.” I have no interest in the high-priest business, but I’d settle for the capacity to fulfill my priestly role as a minister a little better. The classic role of a priest is to stand between God and the people, serving as a mediator. We Protestants long ago rejected the idea that the celebration of the Lord’s Supper is a priestly role – that’s why we have a communion table instead of an altar. We also no longer believe that one must be ordained in order to hear another’s confession and pronounce absolution. Yet we ministers have hung on to the idea that we echo Christ’s priestly role, as we preach and visit and listen and serve. Maybe, as a cancer survivor, I’ll be better equipped for the priestly ministry of compassion.

April 12, 2006 - Chemo 5

Today at 9:30, Claire and I arrive at Dr. Lerner’s office for chemotherapy treatment number 5. The plan, as on previous treatment days, is that Claire will wait with me until my consultation with the doctor is finished, then will leave me there, returning at the end of the day when the treatment is finished.

I go back for the insertion of the needle into my porta-cath, and for the drawing of blood for my weekly blood test (which, on chemo days, is ordinarily done right through the porta-cath). This time, though, there is some difficulty with some kind of clotting or residue that’s keeping the porta-cath from working properly. Raquel, the nurse, injects something into the porta-cath that will dissolve whatever it is that’s clogging the device. This medication will take about a half hour to do its work, so Raquel has one of the phlebotomists come in to draw my blood sample through the arm – the usual procedure on non-chemo days. It’s a second needle stick, but I’ve gotten so used to blood tests by now that it doesn’t trouble me at all. I hardly feel it any more.

My blood count, again, is just fine. White cells are below normal, but not by much. No one seems overly concerned about that.

Claire joins me, then, and we go in to see Dr. Lerner. He asks about my problems with nausea, and I tell him that the combination of Emend and Kytril – two oral anti-nausea medications – seemed to have helped last time, so he prescribes those again this time around. We talk about fatigue, and how exercise is part of the solution to that. It’s something of a vicious cycle – it’s hard to exercise when you’re feeling weak, but, paradoxically, exercise is something that helps build strength. At the cancer fatigue seminar this past Monday, I had heard Marcia, a physical therapist from Life Fitness – the hospital-owned fitness center where I used to work out – talk about the things they can do for cancer patients. I mention this to Dr. Lerner, and he makes arrangements for someone from the Cancer Navigator support program at Ocean Medical Center to call me, and see if this would be a possibility. I’m hoping that - since the doctor's prescribing it - my medical insurance can offset the cost, but even if it doesn’t, I’ll probably do it anyway. I feel I need to do something to get active again.

I ask for more information about the radiation treatments, and Dr. Lerner tells me a bit more, Last time he described it as “a possibility,” but this time he says it will be a virtual certainty, given the sort of bulky tumor I’ve got. He says he will probably be referring me to Dr. Nathan Kaufman, who’s chief of radiation oncology at Ocean Medical Center. Dr. Lerner will continue to direct my overall treatment, but Dr. Kaufman will plan and administer the radiation. Those treatments will probably be five days a week for three weeks, beginning a few weeks after my last chemo treatment.

I go in for the chemo at about 10:30, which lasts until about 5:30. The medicine has done its work, unclogging the porta-cath, so everything proceeds as on previous occasions. The office is evidently crowded today, so for the first time I get a roommate in my little cubicle: a retired woman who’s there for her first chemo treatment for colon cancer, following surgery for removal of an intestinal tumor. She’s feeling anxious about side-effects, and has a number of questions for me about how I’ve handled my chemo treatments. I’m glad to share my experiences with her, but I have to remind her a couple of times that she’s getting completely different medications from what I’m getting, at a different frequency, and for a different total length of treatment. I encourage her to speak to the oncology nurses about side effects, or to find a fellow colon-cancer survivor to ask.

I can hear a lot of myself in her questions, though, as I think back to my first treatments. I had done quite a bit of research ahead of time, reading books and online articles – more than this woman has done, evidently – but even so, I can remember feeling the same trepidation about side effects. I trust I'm being helpful to her, directing her to sources of information that will help her, and encouraging her to be her own advocate, asking plenty of questions.

Claire drives me home, and soon after we get a lovely supper delivered by Jackie, a church member. I sample it as best I can, given the queasy feelings that are already starting. I’ve recorded an old Laurel and Hardy movie on the TiVo, Bonnie Scotland – one we’ve never seen – so we fire that up. It’s a bit of inspired nonsense that gets me through to a relatively early bedtime.

Former Saturday Review editor Norman Cousins is famous for having supplemented his own medical care for chronic illness with relaxation and laughter. At one point, in consultation with his doctor, he stopped his active medical treatment, checked himself into a hotel, and filled his mind with a steady diet of humor – both books and old movies like Laurel and Hardy comedies. He says it helped him: “To the extent laughter or any of the positive emotions, can block panic, depression, or despair, we have a therapeutic ally,” he wrote later. Whatever the case, Bonnie Scotland is a good diversion.

Five treatments down, one to go.

Tuesday, April 11, 2006

April 11, 2006 - Anticipation

Lots of us can remember the old commercial, in which a kid is holding a ketchup bottle up at an angle – the old, glass kind, not a plastic squeeze-bottle – waiting for the contents to flow slowly onto his burger, as the pop song “Anticipation” plays in the background. That song’s going through my head today, as I think ahead to my next chemotherapy treatment coming up tomorrow.

In the commercial, anticipation is a good thing – at least, if you like ketchup (and I do). My anticipation of chemo treatment number five, by contrast, is hardly a pleasant thought.

I’ve heard how, for some cancer patients, just thinking about chemotherapy treatments can be accompanied by a visceral, physical reaction. I remember reading about a woman who ran into one of her oncology nurses in the supermarket, months after her treatments had ended, and immediately felt nauseous at the mere sight of her – a Pavlovian response. Now that my next treatment’s drawing closer, I can imagine a similar queasiness: and I don’t even need a visual cue. All I have to do is think about it.

There’s no good reason for me to dwell on it in this way, of course – but I do. I know it’s only borrowing trouble, but I do it anyway. Today’s a perfectly good day, a beautiful day, but for some perverse reason I feel compelled to live a day ahead, when life will not be so good. If I could only bring myself back down to live in today, things would be so much better.

“The present,” said the philosopher Alfred North Whitehead, “is holy ground.” So why do I flee holy ground, for someplace less pristine? Another writer, Dan Wakefield, puts it slightly differently. Trying to peer into the future, he says, is “like picking God’s pocket.” That presupposes, of course, that God is the most generous of givers: that all that we have and are comes from God and, in the end, returns to God. Therefore, we should not worry about the future, but should rather celebrate God’s abundant gifts in the present. I believe this with my mind, but believing it with my heart is a different matter.

“For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope” (Jeremiah 29:11).

Trusting the future means living fully in the present. Now there’s a spiritual discipline...

April 10, 2006 - A Skirmish in the Drug Wars

This morning I attend a seminar on Cancer Fatigue at Ocean Medical Center. I learned about it from a flyer I picked up in Dr. Lerner's office. I'm certainly experiencing fatigue, so Why not? I asked myself. Maybe I'll learn something.

It's an older crowd. With one exception, I may be the youngest cancer survivor there. But that reflects the general cancer demographics, so it's no real surprise.

I do learn a few things. Fatigue is a problem reported by 90% of chemotherapy patients, yet only between 60% and 70% of physicians mention it as a serious concern. That, in itself, is a telling statistic. It's a side effect mentioned by more patients than any other, yet it's not on the therapeutic radar screen of a significant number of physicians.

That's probably because some cancer fatigue is nebulous: hard to define, hard to address. From my experience, though, I'd say it's very real. It's a kind of malaise, a tiredness without feeling sleepy. Getting more rest doesn't help. I also know that my physical stamina has declined sharply: when I'm walking on the boardwalk, and have to stop every few hundred feet and sit on a bench to catch my breath, I know something's very different.

Fatigue can be caused by a low red blood-cell count (anemia), which can be a side-effect of various chemotherapy drugs. It can also be a side-effect of the cancer itself. A third possibility is that it can be the result of certain toxins that are released into the bloodstream as the cancer cells are destroyed. Since my blood counts have been fine so far, and since I was showing no cancer symptoms at the time I began chemotherapy, it would seem to me that the third explanation is the most likely in my case. But that's my uninformed, non-medical opinion.

The doctor making the Power Point presentation – someone brought down from North Jersey for the occasion – seems most interested in fatigue that can be explained by blood chemistry. Chemotherapy can depress the counts of any one of the three main components of blood: red cells, white cells or platelets. If the red-cell count is down, the problem is anemia. If the white cells are down, the problem is a depressed immune system. If the platelets are down, the problem is inadequate blood clotting, leading to bleeding. The good news, our guest speaker tells us, is that these blood chemistry-related difficulties are all easily addressed. I already receive a Neulasta shot, 24 hours after each chemo treatment, as a prophylactic measure to boost my white blood-cell count. Were I to develop a platelet deficiency, there's a pharmaceutical solution to that as well. If the problem is anemia (a low red-cell count), there are a couple of drug possibilities that can address that situation.

There are two tables at the back of the room with literature on them, and representatives to help distribute it. One is staffed by the American Cancer Society, containing a number of helpful publications. The other table is sponsored by Ortho Biotech, the makers of Procrit – one of the leading anti-anemia drugs. The doctor making the presentation mentions Procrit several times as he talks about anemia.

During the question-and-answer time, one of my fellow patients asks about a drug called Aranesp, which is manufactured by Amgen. This drug is also used for anemia, but is somewhat longer-lasting . The doctor explains that Procrit is a more natural drug – derived from a hormone produced by our own kidneys that boosts red blood-cell production. Aranesp is a good drug too, he says, but it's a genetically-modified version of that same kidney hormone (his assumption seems to be that “natural” is always better). He finds that many of his own patients actually prefer to come to his office more frequently for their weekly Procrit shots, because it gives them an opportunity to see him, if only in passing. Trying for some humor, he refers to that kind of visit as a "drive-by shooting." Apologizing for the bad joke, he explains that, since he's Italian-American and from North Jersey, the Sopranos-style humor plays well in his neck of the woods.

After the main speaker leaves (the distinguished specialist has got a busy schedule, the moderator explains), there's a panel discussion among several local medical practitioners: a clinical social worker, a medical educator, an oncology nurse, a physical therapist and an oncologist. The oncologist turns out to be my own physician, Dr. Lerner. The Procrit-vs-Aranesp discussion doesn't come up again, but I do know that Aranesp is the only anti-anemia medication I've heard Dr. Lerner talk about. One of his office staff gave me information about a clinical trial of a longer-lasting form of Aranesp, in case I ever need it. I was told, at the time, that – should I develop anemia – I would be asked to consider signing the consent forms to receive this more experimental form of the drug. So, my assumption is that Dr. Lerner has a somewhat different opinion of the relative merits of Aranesp over Procrit than does our keynote speaker (although the question never comes up).

As the seminar ends, we're encouraged to stop at the Procrit table on the way out, to receive a bag containing some free gifts: a veritable cornucopia of pharmaceutical-company swag. There are the usual pens, notepads and Post-It notes, but there is also a lap blanket, an inflatable travel pillow, a rubber ball for hand exercises, and a portable CD player and a CD with guided-meditation exercises. All these items, except the CD player, are emblazoned with the Procrit logo.

I'm glad I went to the seminar, because I did learn a lot about cancer fatigue. But I also leave with the distinct feeling that I've been targeted by a rather intensive marketing effort on the part of Ortho Biotech. One unanswered question is, Who paid for the whole event? (My guess would be Ortho Biotech, but I can't be sure.) The Aranesp foot soldiers appear to be AWOL from this particular skirmish in the pharmaceutical wars – but chances are, they were never invited in the first place.

There's big money in cancer treatment, no doubt about it.

Monday, April 10, 2006

April 9, 2006 - Passion Sunday

I'm scheduled to preach today, but I've decided to do something a little different. Today is the day familiar to Presbyterians as Palm Sunday, but there's a parallel, lesser-known tradition that labels it Passion Sunday. The prescribed scripture readings for Palm Sunday focus on Jesus' triumphal entry into Jerusalem. The readings appointed for Passion Sunday focus on the events of his suffering in the days that followed.

Most years, I've preached on one or the other Gospel readings for Palm Sunday, but today I've decided to present the Passion Sunday readings instead, as a single, unbroken reading. Instead of a sermon, I read Mark 14 and 15 from The Message, the modern scripture paraphrase by Eugene Peterson. While not an absolutely literal translation, I think it's a pretty good piece of work – one preacher's attempt to render the Bible into contemporary English, with a bit of creative interpretation thrown into the mix. I figure that hearing these familiar texts in Peterson's somewhat unfamiliar words will be a more memorable experience for my listeners – and, from the favorable comments I hear at the door afterwards, it appears I'm right.

In recent years, attendance at Maundy Thursday and Good Friday services has gone down, all across the country. That means, practically speaking, that many Christians leap directly from the "Hosannas" of Palm Sunday to the "He is risen" of Easter, without ever reflecting much on the painful and awe-inspiring events that took place in between. Perhaps one of the reasons why Mel Gibson's film, The Passion of the Christ, made such a splash a couple of years ago was that the events of Jesus' passion have become less than familiar to many people.

I find it a powerful experience to read the whole story, myself. Most Sundays, I read and preach on scripture selections of no more than a dozen verses or so. That approach has a lot to recommend it, but sometimes there's something to be said for taking in the whole panorama. The Last Supper, the Agony in the Garden, Judas' Betrayal, Peter's Denial, the Trial, the Crucifixion, and finally the somber scene in which Joseph of Arimathea claims the Savior's body from Pilate and lays it in the tomb – together these discrete passages weave a tapestry that's worth viewing in its entirety. As I read the words, I'm struck again by what a moving story it is.

Besides, reading about and picturing the things Jesus suffered at the brutal hands of the Roman justice system has a way of putting my own physical suffering into proper perspective. In a few days' time, when my upper chest is again pierced by a slender, sterilized needle and the chemotherapy medicines slowly drip into my veins through my porta-cath, it's for the ultimate purpose of healing, not torture and death.

Jesus' sufferings are a means of healing in a very different sense, as these words of the prophet Isaiah make clear: words that originally had a very different sense, but which the Christian church has, over the centuries, come to see as referring to him...

"Surely he has borne our infirmities
and carried our diseases;
yet we accounted him stricken,
struck down by God, and afflicted.
But he was wounded for our transgressions,
crushed for our iniquities;
upon him was the punishment that made us whole,
and by his bruises we are healed."
(Isaiah 53:4-5)