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!

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.

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

SoCal Woodie Club Gathering

The Southern California Woodie Club hosted their annual event at Doheny State Beach, Dana Point, CA today. Despite being cold and overcast, there were over 150 examples of these classic beach wagons. All photos taken with a Pentax *ist-DS2 and the FA50mm f/1.4 lens. All photos shot at f/4.0 in RAW mode, and processed with SilkyPix 2.0. Images are full-frame (no cropping).

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.

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.