Thursday, June 29, 2006

June 27, 2006 - God, the Humorist

This evening I have the pleasure of seeing one of my favorite performers, Garrison Keillor (of A Prairie Home Companionthe Saturday-evening radio show on NPR, and more recently, a major motion picture of the same name). He’s on the road with a company of talented actors and musicians, traveling under the name, “The Rhubarb Tour.” Their venue this evening is the Great Auditorium at Ocean Grove, New Jersey – a curious town with a Methodist camp-meeting heritage, filled with quaint, rambling houses adorned with Victorian gingerbread.

The auditorium itself – a nineteenth-century wood-frame behemoth – seats 6,500, and Garrison pretty nearly fills the place. It’s a joyous, somewhat nostalgic evening, filled with marvelous folk music, amusing dramatic sketches and – of course – one of Garrison’s famed “news from Lake Wobegon” monologues. Although this particular show isn’t being broadcast, it’s still conducted as though it were on the radio. We watch Fred Newman (the puckish sound-effects guy) and the other actors as though we were kids peering through a knothole in a ballpark fence – even though everything the performers are doing is intended for the ear, rather than the eye.

One line Garrison speaks in a dramatic sketch sticks with me. “Do you think God is a humorist?” asks one of the actors – after recounting a whole list of disasters, both natural and human.

“I think God is a humorist,” Garrison replies, hopefully – “but he’s working with a slow audience.”

I find that to be as good an answer to the problem of human suffering as any (bear in mind, I’ve found no answer to this question to be completely satisfying). How can God permit people to get sick – seemingly at random, with neither rhyme nor reason to the selection – and still be adjudged kind and benevolent? Nothing wipes a smile off a person’s face like the words, “You have cancer” – so why does the Almighty ever allow such hard words to be spoken?

Maybe the problem lies not with God, but with us. Maybe we’re simply unable to peer over the next hill, to pick our way through the fog that clings to the ground like cobwebs. Maybe the divine joke has been told, centuries ago – and the universe is still laughing uproariously – but we poor, dumbfounded humans are left displaying that deer-in-the-headlights look, saying, “I don’t get it.”

I’ll admit it. At times I’ve been “a slow audience,” when it comes to my own cancer. Little by little, the truth is dawning on me that having this disease is by no means the worst thing that could happen. I’ve learned some remarkable things since my diagnosis: lessons about life, and hope, and love, and family, and perseverance, and faith. In the great scheme of things, how much does it matter that I spent a third of a year pumped full of noxious chemicals and feeling, alternately, nauseous and depressed?

A couple weeks ago, I went to see Garrison Keillor’s (and Robert Altman’s) film, A Prairie Home Companion. In the film, a radio show strikingly similar to Keillor’s own is facing its final broadcast. A large corporation has bought their ramshackle theater, and plans to tear it down for a parking lot. Some of the cast members can hardly believe this venerable entertainment institution is headed for oblivion – especially since Garrison, the host, is planning no special thank-you or retrospective for his final broadcast. His plan is to do a normal show, darken the “on the air” light and just walk away.

Lola, teenaged daughter of one of the singers – played by Lindsay Lohan – asks him, “This isn’t really going to be your last show, is it?”

“Every show is your last show. That’s my philosophy,” replies Garrison.

“Thank you, Plato,” deadpans Lola’s Aunt Rhonda (played by Lily Tomlin).

Is the radio host being wise? Or is he merely in denial? The movie leaves us wondering – although, having had cancer, I’d vote for “wise.” Plato’s mentor, Socrates, used to advise his students to live each day as though it were their last. The Psalmist encourages us to “number our days,” so we may gain “a wise heart.”

Maybe it’s all part of the divine joke. And maybe, just maybe, we’ll get it someday.

Saturday, June 24, 2006

June 22, 2006 - Graduation from Physical Therapy

Today, rather unexpectedly, I graduate from physical therapy. I’ve just arrived for one of my usual sessions – which have grown rather routine – when I ask at the reception desk about getting a few more therapy dates on the calendar. Let’s wait and see what Marcia says, the scheduling person tells me (Marcia’s one of the senior physical therapists, who seems to do a lot of the patient evaluations).

As it turns out, Marcia takes me downstairs, to the fitness center where I’ve been a not-so-conscientious member in the past. It’s time, she tells me with a smile, that I transition from the highly-supervised program upstairs to the more self-directed activities on the first floor. She leads me over to a few of the exercise machines, some of which I’ve worked on before, and others of which are new to me. Even on the ones I’m familiar with, she sets the number of metal weights a good bit lower than what I’ve been used to in the past. “Slow and steady” seems to be the physical-therapy motto. She records all the instructions on a paper chart, and shows me the file drawer where it will be kept. I’m supposed to take it out and refer to it, as I repeat the exercise routine in the future.

We walk back upstairs afterwards, and after we reach the top, Marcia tells me she notices a big difference in me. When I first started, she recalls, there was no way I could have walked up that flight of stairs without getting completely out of breath. Now, I climb them rather easily. The progress has been so gradual, I haven’t really noticed. But I suppose that’s the best kind of progress, for someone in my situation – slow and steady.

Marcia hands me a wallet card for two weeks of free, “step-up” access to the fitness center. After that, medical insurance will no longer pay for my admission to the place. I’ll probably pony up the membership fee myself – although I’m considering going to another local fitness place, instead, that offers much more elaborate facilities, including a swimming pool.

Maybe it’s worth paying a little more – maybe even a lot more – for a place I’ll be more eager to go to. As always, when it comes to exercise, the hardest thing for me is getting started. Yet I’m even more aware, now – this side of my cancer treatments – of how important exercise is to my health.

Friday, June 23, 2006

June 21, 2006 - Closure

Closure. Teri, a friend of mine who’s a breast-cancer survivor, wrote to me recently, sharing some reflections on this word. Once she’d finished her treatments, her friends and family were eager to help her celebrate, even throwing a wonderful party for her. Yet she had a distinct feeling that their motives in doing so were complex:

“I know their intentions were pure. They did want me to be happy again. But I also know that part of that was so that they could be happy again. They wanted closure on thinking of me as sick. It was too hard for them to deal with so they wanted me to close it.”

But is closure ever possible, when it comes to something like cancer? Teri’s not so sure about that:

“Actually I am beginning to believe and accept the idea that I will never have closure on this. Every time I see the scar and the dimple on my breast I will remember that there was cancer. Every three months when I visit one of my doctors I will hold my breath as they look for new lumps. I can't imagine what my next mammogram will stir in my guts. Every time my body develops a new ache or pain there will be a little voice deep inside whispering cancer. Sure, I wish I could close all that off and lock it in the past. But I know that hasn't happened yet and may never happen. But that is OK with me.

I think I have decided it is OK because there are some parts of this experience I do not want to close. I have a new appreciation for life and I want to keep it. I have a new scale for measuring the real severity of a crisis. I ask more often - so does it really matter? I think more seriously about my body - what I eat, what I do, what contaminants are in the world around me. I really don't want closure on any of that.”

I realize I’m living through a protracted period in which closure is an elusive ideal. I’d like to be able to say, one day, “It’s over” – but since I have a form of lymphoma that may have some features of the indolent type (which typically cannot be cured, only managed), I may never reach the point where I can confidently declare myself cancer-free. The tendency to genetic mutation may still be there, buried deep in my DNA code. Some of my lymphocytes could start growing again, and there could be millions of them before any abnormality would begin to show up on a CT or PET scan.

Am I losing sleep worrying about this possibility? Not really. I’m aware of it on an intellectual level, but so far it hasn’t “stirred anything in my guts,” as my friend puts it. Maybe after I’ve had my next CT scan and I’m waiting for the results... but not now. Right now, I’m just glad to be getting back into normal life, even if it still has some ragged edges.

Tuesday, June 20, 2006

June 18, 2006 - Family Retreat

This weekend I’ve been on our church’s Family Retreat, at Johnsonburg Presbyterian Camp, in northwestern New Jersey. This event, originally conceived as an inter-generational, all-church getaway, has since evolved into a retreat for families with small children. I enjoy the opportunity to go when I can, because it’s fun to see the family members interacting with each other, and with friends from other church families.

Often, Robin anchors this retreat, taking a chaplain role, but this year she’s off representing Monmouth Presbytery as a commissioner to our denomination’s General Assembly in Birmingham, Alabama, so it falls to me to be at Johnsonburg with a whole gaggle of young children and their parents (and, in a few cases, grandparents). Jim, one of our elders, has agreed to preach and lead worship in our Sunday-morning services.

It’s an enjoyable duty. The weather is ideal this year, and everything runs smoothly with the retreat program (excepting, of course, the usual assortment of minor injuries that occur when kids are at play). It’s fun to see the children doing things like catching fish in the lake, swimming in the pool, ascending the climbing wall – enjoying themselves with their parents at their side. These young families are often beset by competing demands for their time, and it’s good for them to get some time away. It makes me a bit nostalgic for the days when our kids were that small.

One of the challenges the older kids face is the climbing wall. There’s expert assistance from the camp staff, and plenty of safety equipment. Everyone’s encouraged to make it as far as they can. It’s an unfamiliar role for the kids, using hands as well as feet to carefully pick their way up a vertical surface. The handholds and footholds look insubstantial, but in reality they’re very adequate, once the climbers get the hang of it (no pun intended).

There’s also a natural tendency for climbers to rely on the safety rope – to try to pull themselves up by the rope, rather than letting it hang loose, trusting their own hands and feet. Getting up a climbing wall is mostly a matter of learning to trust oneself and one’s own abilities – relying, also, of course, on others who are nearby, “spotting” for safety purposes and cheering the climbers on.

It’s not unlike living with cancer. For us cancer survivors, the journey is ours alone – although there are others nearby, eager to help. As the old spiritual puts it,

“We must walk this lonesome valley,
We have to walk it by ourselves;
O, nobody else can walk it for us,
We have to walk it by ourselves.”

I do find, on the retreat, that my energy level is still a bit on the low side. Just walking from our lodge down to the lake, I have to pause for a moment to rest. During the Saturday-afternoon free time, I return to my room for a nap.

Fatigue is sneaky, that way. It’s been so many months since my energy level was normal, that I don’t quite know what normal is anymore. I know I’m feeling better than I was during my chemo treatments, but that doesn’t mean I’m ready, yet, to run on all engines. The improvement I’m seeing is incremental, so there are no dramatic breakthroughs, no milestones of improvement, by which to gauge the pace of recovery.

One handhold at a time...

Thursday, June 15, 2006

June 15, 2006 - Belonging

Part of the folklore of organized crime – be it the Mafia or street gangs – is that, once you join, you never leave. If you're a "made man" in La Cosa Nostra, a made man you stay. You can never retire, or change occupations. Always, you're bound by a certain code of conduct – a despicable code of conduct, to be sure, but a code of conduct all the same.

I'm thinking, today, about some words I read at the end of Lance Armstrong's book, It's Not About the Bike. Having finished treatment and having won the Tour de France, Lance is asking the question of himself, "What comes next?" The answer is that, when it comes to his cancer, there is no "next," no moving on:

"I will always carry the lesson of cancer with me, and feel that I'm a member of the cancer community. I believe I have an obligation to make something better out of my life than before, and to help my fellow human beings who are dealing with the disease. It's a community of shared experience. Anyone who has heard the words You have cancer and thought, ‘Oh, my God, I'm going to die,' is a member of it. If you've ever belonged, you never leave." - It's Not About the Bike (Putnam's, 2000), p. 274.

I expect this is true even of those whom the doctors label "cured." Even if there's no expectation of the disease ever coming back, there's still the memory of the ordeal: an experience shared with millions of others who have had this disease, in one of its many forms.

Groucho Marx famously quipped, "I would never join a club that would have me for a member." The cancer community has only one membership requirement, and it has nothing to do with character, talents or notches on a resume. It's very egalitarian, that way. But once you join, you have a lifetime membership.

I'm going to be discovering, in the months and years to come, what my particular obligation is, as a member of this community. It may mean continuing to attend support groups, and lend assistance to others. It may mean making myself available to write or speak, in aid of organizations that support cancer survivors and their families. It will certainly mean giving an extra measure of attention to patients who are newly diagnosed (by all accounts, diagnosis is the most difficult time, emotionally, for patients).

Members of the Cancer Underground reached out to me at a critical time. I would like to be able to do the same for others.

Monday, June 12, 2006

June 11, 2006 - What Cancer Teaches

One decision we preachers have to face, sooner or later, is how much of ourselves and our personal stories to reveal in our sermons. I learned long ago, out of respect for their privacy, not to use stories about my kids as sermon illustrations. I’m generally cautious, too, about spilling too many details of my own life from the pulpit. I know how quickly that can become the main focus: detracting from the purpose of the sermon, which is to lead people to God. (One of my aims in writing this blog, if truth be told, is to avoid the need to use the pulpit as a health bulletin board for the people of our congregation – who, understandably, want to know the latest news.)

Yet, I’ve also learned there are certain occasions when a first-person narrative is unavoidable. When my father nearly died of a burst aneurysm some years back, and my brothers Jim, Dave and I spent many days out in California, visiting him in intensive care, I came back for Easter Sunday and preached about that experience. There have been a few other occasions, as well, when I’ve violated my unofficial principle, and talked about myself. One of the realities of ministry is that the life of a parish pastor is lived in the public eye. That’s not going to change. We may as well get used to it.

So, this morning, I depart from the lectionary (that ecumenically-inspired list of recommended scripture passages), and preach a sermon, “What Cancer Teaches.” It’s the second time I’ve devoted a sermon to the subject of my struggle with cancer (the first was “God Our Strength,” on February 5th).

To read the manuscript of "What Cancer Teaches," click HERE.

As I sat down to write the manuscript last night, the words flowed out from my heart and mind rather quickly. Today, the same thing happens as I preach. It feels right to do this.

At the church door afterwards, some church members who are survivors of cancer and other serious illnesses come up and express their appreciation. It’s not that I’ve just given them the definitive word on surviving cancer. They’re glad I’ve broken the silence, sharing something of the inner life of a person facing life-threatening illness.

We live in a society that idolizes youth and good health. Often, the sick and disabled are marginalized, and are subtly made to feel, somehow, that they’re at fault for their condition.

The church is a community of all types and conditions of humanity – the sick as well as the healthy. We’re all in this together. We should share our stories with one another more often!

June 10, 2006 - Re-Entry

Yesterday, as I drove back from the blood-cancer conference in Philadelphia, I was listening to a book-on-tape of Lance Armstrong’s autobiography, It’s Not About the Bike: My Journey Back to Life (New York: Putnam’s, 2000). Lance, of course, is the world-champion cyclist who recovered from testicular cancer that had spread to his lungs and his brain, going on to win seven Tour de France bicycle races.

Something Lance wrote, about the weeks and months immediately following his cancer treatment, struck me as true to my experience. After a herculean struggle that included an exceptionally harsh chemotherapy regime, as well as surgery to remove a testicle and cancerous growths on his brain, Lance found it hard to take up the tasks of his former life again. For him, of course, that meant training as a competitive cyclist.

The French-sponsored cycling team of which he was a member had removed him from their roster, for medical reasons. His former corporate sponsors had all dropped him, assuming his career was finished. He was cashing monthly disability-insurance checks that would keep him financially comfortable for the next five years, without his having to lift a finger. Although he had had some success in light physical training, most people assumed Lance Armstrong would never again be a contender in the world of competitive cycling.

Lance knew that, if he entered another race, Lloyd’s of London would immediately cut off his disability payments, and he had no guarantee he would ever make it back to the top of the cycling game, where the big money was. Yet there was a part of him that knew he had to take that risk.

Even so, he found it hard to get started. He procrastinated, whiling away his days playing golf with friends. It was hard to move forward, as a cancer survivor:

“But how do you survive cancer? That’s the part no one gives you any advice on. What does it mean? Once you finish your treatment, the doctors say, You’re cured, so go off and live. Happy trails. But there is no support system in place to help you to deal with the emotional ramifications of trying to return to the world after being in a battle for your existence.

You don’t just wake up one morning and say, ‘Okay, I’m done with cancer, and now it’s time to go right back to the normal life I had.’... I was physically recovered, but my soul was still healing. I was entering a phase called survivorship”
(p. 186)

I’m not even physically recovered yet, but already I can see the challenges before me. I’m not the same person I was, before beginning treatment. There are days when I feel unaccountably angry, recalling the things I’ve had to go through. There are other days when I have no patience whatsoever with the little things, the minutiae of running a church. There are times when I even miss the freedom of my sick days – when I felt lousy, physically, but could spend my time however I wanted to.

When Lance and his then-wife, Kik, finally did rent an apartment in France and he began entering bicycle races again, he found it hard to marshal the enthusiasm, the competitive drive, that had once propelled him:

“My own attitude wasn't as good. Things weren't going so well for me on the road, where I had to adjust all over again to the hardships of racing through Europe. I had forgotten what it was like. The last time I’d been on the continent was on vacation with Kik, when we’d stayed in the best hotels and played tourists, but now it was back to the awful food, the bad beds in dingy road pensions, and the incessant travel. I didn't like it.

Deep down, I wasn’t ready. Had I understood more about survivorship, I would have recognized that my comeback attempt was bound to be fraught with psychological problems. If I had a bad day, I had a tendency to say, ‘Well, I’ve just been through too much. I’ve been through three surgeries, three months of chemo, and a year of hell, and that's the reason I'm not riding well. My body is just never going to be the same.’ But what I really should have been saying was, ‘Hey, it’s just a bad day’”
(p. 188).

I’m moving further into this phase called “survivorship.” And, like Lance, I’m finding there aren’t so many road signs to mark the way. I’ve grown quite used to the routine of going into Dr. Lerner’s office for my weekly blood tests, and having the nurses inquire into minute details of my health and physical condition. Now, the doctor has said, “You’re doing fine, see you in three months.” My only trip into his office will be once a month, to have my porta-cath flushed. I’m gradually moving back into full-time ministry – although, frankly, there are days when I still don’t feel up to it.

I’m learning, as Lance did, that there’s a gap between active medical treatment for cancer and full recovery. As for how we scope out a path across it, most of us cancer survivors are left to our own devices.

June 9, 2006 - Cancer Conference

Today I arise bright and early, and drive to Philadelphia for a conference: “The 2nd Annual Focus on Leukemia, Lymphoma and Myeloma.” Co-sponsored by the Abramson Cancer Center of the University of Pennsylvania and the Leukemia and Lymphoma Society, it’s for cancer survivors, family members and health-care professionals.

The setting is luxurious: a Hilton Hotel that evidently does a large conference business. Everything about the conference is first-class: the meeting rooms, the lunch, the audio-visual presentations – and, it costs me nothing. All expenses are paid. I’ve been very impressed by what the Leukemia and Lymphoma Society does, by way of educational and support services for cancer survivors and their families, and this event is no exception.

We start off with a biology lecture by Dr. Martin Carroll, a researcher at the University of Pennsylvania, that leads me to look at blood cancers in a new way. Here are a few insights from that talk (the description “blood cells” refers to lymphocytes – the cells that circulate through the lymphatic system – as well as to the red and white cells we normally think of as blood cells):

“Cancer cells are blood cells that forget to die.” Blood cells grow out of stem cells. While stem cells live a very long time, once they change into blood cells, they have a very limited lifespan. Blood cells are constantly dying and being replaced. Once blood cells mutate into cancer cells, however, they retain some of the long-lifespan characteristics of stem cells. This is a problem – because, in the normal order of things, these cells would need to die to make room for new cells that are being created. Instead, the mutated cells hang around and cause problems.

“A stem cell can make a new blood cell in about two weeks.” This is the reason for the three-week interval between chemotherapy treatments. Once the chemo drugs kill cancer cells, the body mistakenly tries to replace them, by transforming more stem cells into cancer cells. It sounds to me a bit like “Space Invaders,” the primitive video game we used to play in the arcades, as kids: you shoot down a row of creepy-looking aliens, only to see another rise up in their place and start marching ominously toward you.

“The body makes few mistakes.” We have trillions of blood cells, but only a few ever turn cancerous. In order to manufacture a single blood cell, about three billion DNA molecules are required – and the vast majority of these DNA molecules are manufactured absolutely correctly.

“Just because it’s a genetic disease doesn’t mean you got it from your parents.” There are inherited DNA mutations, and there are acquired DNA mutations. Because they’re not transmitted by mutated sperm or egg cells, blood cancers are acquired, not inherited.

“When pathologists examine slides, there must be millions and millions of malignant cells in the body before they even start detecting them.” At the time when cancer is first diagnosed, the first mutation probably began months, and even years, before. It was only when the numbers of malignant cells got well into the millions that they began to show up on the pathologists’ radar.

“It’s the proteins that arise out of DNA and RNA that cause blood cancers.” An oncogene is a protein that can cause blood cells to grow, bypassing their normal regulatory mechanisms. When we discover the genetic abnormality at the root of cancer, we can attack the protein with certain, targeted medications that aim directly for the protein. Rituxan – the drug I received along with my chemotherapy medications – is one of these new, targeted therapies.

“Lymphatic cells are extremely complicated.”

Unlike other blood cells, which are relatively straightforward, lymphatic cells are much more complex, and are therefore hard to study.

“Chemotherapy drugs did not arise out of molecular biology.” They were developed based on empirical observation. World War I- and World War II- era doctors noticed that soldiers that had been exposed to mustard gas developed abnormalities in their bone-marrow cells and lymph nodes. This led them to experiment with mustard-gas derivatives to fight lymphoma, which is a disease of lymphatic cells grown too large. Cytoxan – one of the chemo drugs I received as part of the CHOP combination – is derived from mustard gas.

“Lymphocytes are the generals of the lymphatic system.” (This one comes not from Dr. Carroll’s keynote address, but from a workshop on aggressive lymphomas, led by another Penn cancer physician, Dr. Babis Andreadis.) When there’s an infection, the body calls in the generals – the lymphocyte cells – to scope out the situation and decide what to do. In a healthy system, the lymphocytes (“the generals”) then call in the white blood cells, which are like the foot soldiers in the battle against infection. The lymphocytes tend to congregate in the lymph nodes, which – when cancer transforms them into too-large cells that live too long – causes a population explosion in the lymph nodes, which causes swelling. That swelling of the lymph nodes is often the first hint patients have that something is not right – and by then, the cancer is already far-advanced, because of what has been happening for some time on the microscopic level.

After the keynote address, I notice Dr. Carroll standing by himself, off to one side of the room. I go up to him and ask a question about my particular type of NHL, “diffuse mixed large and small cell.” He tells me this type sits on the borderline between indolent and aggressive lymphomas. I have some of both types of lymphoma cells: the smaller, indolent cells, and the larger, aggressive ones. This means I have the worst of both worlds. Large-cell, aggressive lymphomas are more immediately dangerous, because they are fast-moving – although, with treatment, they can often be cured completely. Small-cell, indolent lymphomas, on the other hand, are less of an urgent situation, but are very hard to defeat completely, staging slow-motion comebacks over time. People like me, who have this borderline type, must be treated quickly, with often-harsh chemo regimens; yet, we’re also unlikely to be cured, due to the small-cell component of our disease. Instead, the small-cell component must be managed over time – much as a chronic disease like diabetes is managed.

I find these simple explanations – designed for people like me, without much science background – to be extremely useful. I enjoy the conversations over lunch, as well. I’ve come to the conference by myself, but when I get talking to my neighbors – who are cancer patients and family members of cancer patients – I find we have a lot in common.

I stick around for an afternoon workshop session as well, but find that to be less helpful. The workshop, billed as “Cultivating Spiritual Well-Being,” is led by a hospital chaplain. It’s the only topic on the program that has anything approaching a theological dimension. I find, though, that the leader is trying so hard – “bending over backwards” would be more accurate – to be respectful of religious diversity and not to offend anyone, that she ends up saying very little of substance. Her talk is on the difference between “spirituality” and “religion”: she’s holding fast to the idea that it’s possible to be “spiritual but not religious,” as many in our culture claim they are.

I don’t buy it, and never have. To me, if you try too hard to reduce religious faith to a least common denominator, what you end up with is the smallest denominator of all: zero. And “zero” is about what I get out of the speaker’s Power Point presentation on spirituality. It’s too bad, because she strikes me as a caring person, and probably a very fine chaplain, when it comes to one-on-one encounters with hospital patients. She proves to be a pretty good facilitator, as well, when we reach the time of discussion at the end. Yet it’s impossible to tell, from her presentation, what her own religious background is.

I would have liked to have known. I’ve always believed that the most fruitful ecumenical or interfaith discussions happen when two people of different traditions sit down and share who they are, practicing careful listening and respectful questioning. The chaplain could have been a Presbyterian, for all I know, or she could have been a Buddhist – but, either way, I felt deprived of hearing whatever it was she’d recommend, by way of spiritual practices that come from her own tradition. And that’s a shame.

All in all, it’s a good and useful day – well worth the long drive to Philadelphia and back.

Saturday, June 10, 2006

June 8, 2006 - Anniversary Dinner

Today is our 26th wedding anniversary, so Claire and I go out to dinner at a local seafood restaurant. It’s been hard for me to free up this evening, because my calendar’s suddenly gotten rather full – but of course I manage to do it. June is always that way: surprisingly busy. Church programs are winding down for the summer, but there’s still a lot to fit in before the summer lull is upon us. This year, there’s the added factor of a lot of additional work that’s been postponed during my chemotherapy treatments. I’m having to watch myself, to be sure I don’t take on too much.

We sit across the restaurant table from each other, and take stock of where we’ve been. It’s been a wild ride, the past few months – and the next few months are shaping up to be crazy in a different way, as Claire’s sister Eva and her 13-year-old daughter, Elizabeth, will soon move in with us for the summer (they’ve been living in a “winter rental” near the beachfront amusements, and their lease will be up in a week or so, allowing their landlord to kick them out and rent the place for big-bucks weekly rates). Eva’s 19-year-old son, Cory, is already living with us. Our niece, Elizabeth, must have brain surgery in late June, to remove an arachnoid cyst that’s been putting pressure on her brain, causing her severe headaches and balance problems. It’s not an especially difficult operation, as brain surgery goes – but it is brain surgery, all the same, and there will be lots of concern for Elizabeth as she goes into the operating room and recovers afterwards.

Who would have thought that, as a family, we’d be facing so many medical challenges in such a short space of time? Yet that’s the way life is, sometimes. We take it as it comes.

I can see, glinting on Claire’s wrist, a watch I’ve just given her, as an anniversary gift. It’s as much of a bracelet as it is a watch – a jewelry item, a bit of a splurge. We don’t usually do much for each other by way of gifts at our anniversary, but I felt I needed to do something this year to say “thank you” for all the ways she’s been there for me throughout this ordeal.

Claire’s been a rock through it all. I don’t know how I could have done it without her. The watch is just a token, a reminder – for me as much as for her.

“For better for worse... in sickness and in health.”
That’s marriage – and thank God for it!

“Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up the other; but woe to one who is alone and falls and does not have another to help.” – Ecclesiastes 4:9-10

June 5, 2006 - Pulmonologist

Today I stop in for a visit to Dr. De La Luz, my pulmonologist. I’ve seen him occasionally in the past, for help with sleep apnea. Today my purpose is to check out the nodule in my right lung that has grown in size between the time of my March CT scan and the one more recently, at the end of my chemo treatments.

Like Dr. Lerner, Dr. De La Luz is not overly concerned with the nodule, after observing it on the CT scan – especially since the PET scan indicates that it’s not likely to be a malignancy. He explains that it’s not actually located in the lung, but rather in the pleural tissues just outside the lung. It’s hard to see it on the CT scan image, though because it’s relatively small, and located between two of the scan’s cross-sections.

“I have good news and bad news,” says the doctor, after examining the films. “The good news is, it doesn’t appear to be anything to worry about. The bad news is, you’ll have to have another CT scan.” In order to be absolutely sure, he tells me, wants to take a look at another picture.

He orders the scan for several weeks hence, just after the fourth of July – giving it some extra time, to see if whatever it is that’s showed up on the earlier scans will grow any bigger.

Yet another test. I’ve had plenty. But I comply – what else can I do? If the last several months have has taught me nothing else, it’s the importance of being vigilant.

Monday, June 05, 2006

June 3, 2006 - On the Boardwalk, with Ben

This morning our son, Benjamin, comes to me, and asks if I want to join him for a walk on the Boardwalk. Personally, I suspect he’s on a mission to see that I get more exercise (a worthy endeavor). I readily agree.

Our house is about six blocks from the Boardwalk. In healthier times, I would have considered walking the entire distance, but with my stamina still low, I know that just making it to the Boardwalk and back will be all I can manage. So, I suggest we drive there.

It’s a Saturday during the busy summer season. Ordinarily, on such a day we wouldn’t have been able to find a parking place within about four blocks of the beach – thus rendering our driving plan moot. But today is cool and gray, with a forecast for rain. We find a place a block and a half from the boards with no difficulty. Out on the beach, the lifeguards are sitting on their wooden stands, with nothing to do. The only people on the beach are some high-school kids tossing a football. The badge-checkers are nowhere to be seen – evidently, the beach management has prudently decided they would pay out a lot more in salaries today than they would take in, in revenue. Free beach admission, to anyone hardy enough to want it!

It feels good to walk – although I have to stop a couple times to rest on a bench. I don’t make it the whole, one-mile length of the Boardwalk, but I do make it a little further than I did the last time (Marcia, my physical therapist, has suggested I keep track of which bench marks my turn-around place, then try to go a little further the next time.)

We talk about a lot of things, mostly inconsequential. Ben does lecture me gently about my health, and particularly my diet. He’s right: I don’t eat as well as I should. He’s a good example for me, being very conscientious about his diet (no surprise, since he works nights as a cook in a vegan restaurant). Now that I’m in remission, it probably is time to try again to modify my diet in a more healthy direction (a lifelong struggle for me), and be more diligent about exercise.

Ben will be 22 in about a week. He has one semester to go before graduating from Monmouth University. We're talking together, man to man. This is the first time I can recall that he’s urged me, so strongly and so intentionally, about some steps I could take to improve my health. I’ve heard people much older than I am speak of how it feels to have the tables turned, as the child starts parenting the parent. It feels a little like that to me today.

I’m not sure I like the feeling, on one level; but on another level, I welcome it. I need all the encouragement I can get to lose weight, and get myself into better physical shape. My son’s words today are an act of love. Thanks, Ben.

Saturday, June 03, 2006

June 2, 2006 - Under the Weather

Today – a day of summer thunderstorms – I’m feeling under the weather, in more ways than one.

I’ve got a terrible head-cold, the sort of ailment that commonly occurs at a time of changing seasons like this one. That, in itself, would not be worthy of mention in this blog, were it not for the fact that I’ve gone such a long time without having anything similar.

Throughout the three and a half months of chemotherapy, I wasn’t sick once (except for the side-effects of the chemo itself). This is fairly unusual, I think, and reflected the fortunate fact that my white blood-cell count – aided by regular Neulasta injections – never did dip below normal. Neither did my red cells or my platelets. Several of the oncology nurses told me this is unusual for recipients of the CHOP chemo cocktail. Most people receiving these drugs have blood-count problems at one time or another.

I’ve been under strict instructions from Dr. Lerner to call his office or answering service instantly, day or night, should my temperature ever rise above 100.5 degrees Fahrenheit. Were an infection or illness to occur at a time when my immune system was compromised, the consequences could have been serious. But such a phone call never became necessary.

Some members of my extended family would attribute this stamina to “good MacKenzie genes” (my grandfather lived to be nearly 101). I think it could have just as much to do with the beneficial effects of Neulasta, but who knows? I’m just glad my chemotherapy was relatively uneventful, that way.

Claire tells me some of her hospice colleagues predicted my head cold, or something like it (she’s a hospice chaplain, but works very closely with nurses and social workers who are part of the hospice team). “Just you wait,” a few of the nurses said to her this week. “Now that your husband is done with his chemotherapy, he’ll surely get sick. We’ve seen it happen with lots of other patients.”

They were right. Facing the life-threatening challenge of lymphoma, I’ve been running at high energy (or as high as I could manage, given the cancer fatigue). Once I heard the word “remission,” though, and the emotional pressure was lessened, the adrenalin stopped flowing so strongly. Then, I woke up with a scratchy throat and a runny nose.

I’d much rather deal with a head cold than chemotherapy, of course. Yet I do find it a telling reminder of how closely linked are our physical bodies and our state of mind and spirit.

Thursday, June 01, 2006

June 1, 2006 - Squirrel on a Power Line

There’s an apocryphal story some folks from my tradition like to tell on ourselves (although, in fact, the story works equally well for most Protestant traditions). Once there was a Catholic church, a synagogue and a Presbyterian church, that occupied three of the four corners of an intersection. A terrible lightning storm came along, one day, and it so happened that all three places of worship were struck, and set afire.

The three spiritual leaders happened to be nearby, and arrived at their respective burning buildings at roughly the same time.

The Catholic priest rushed into his sanctuary, and emerged a few moments later with the most precious thing he could think of: the Blessed Sacrament.

The rabbi ran into his synagogue, and came out a moment later, carrying the Torah scroll.

The Presbyterian minister ran into her church, but didn't come out.

The minutes ticked by. The fire got worse. Her two colleagues were beginning to wonder if she was all right.

They ran around to the back of the building, and there they came upon their friend, the Presbyterian minister, sitting exhausted on the curb. She was covered with soot, her head in her hands.

"Are you all right?" they asked.

"Don't worry, I'm fine," she replied. "You simply have no conception how heavy a photocopy machine is!"

Now, remember that story, as I tell you this one.

First thing this morning, I drive our daughter Ania to the nearby Ocean Care Center – a satellite emergency room and outpatient-services center of Ocean Medical Center – for a routine blood test ordered by her doctor. When we arrive there, we see several fire trucks outside the building, and a plume of smoke spiraling up from a smoldering, dumpster-like box on the adjacent Blockbuster video store property.

The box is a collection-bin for used clothing donations. Our first assumption is that some vandal has set it afire. When we arrive at the emergency room, though, the admitting clerk tells us the fire was caused by an unlucky squirrel that was walking along the main electrical power line into the Care Center. The mega-jolt sent the poor, electrocuted beast soaring through the air like some grisly firework. The power line itself caught on fire, and fell down onto the clothing-donation bin, setting off the bags of used clothing inside. It’s a freak accident – and a not-too-dangerous fire – that the volunteer firefighters, Point Pleasant’s finest, are already well on their way to extinguishing.

The Care Center, however, is on emergency-generator power. Can they still do a blood draw, I ask? Oh, sure, says the clerk (it looks like we’re the only clients there at this hour). She has us sit down for the obligatory registration procedures, at the common check-in desk used by both the emergency room and the outpatient-services department.

The clerk apologizes that, due to the fire, not everything electrical is working. There’s no air conditioning in the mostly-windowless building, and she has to walk down the hall to find a functioning photocopier, to copy our insurance ID card.

The lights are on, though, and her computer is working just fine. All the high-tech machines back in the emergency room are evidently working, as well (not that we need any such thing today – coming, as we have, for a decidedly low-tech blood draw).

Therein lies a parable of modern medicine. Suppose you were running an emergency room, and you had to figure out which electrical devices were most essential, in the event of a power failure. Which would you choose?

Any medical machine that sustains life is a no-brainer – as are appliances like refrigerators, to keep medicine cool and ice-packs frozen. Lights are important, too, so doctors and nurses can see what they’re doing. Yet there’s one other device, whose functioning is so essential to twenty-first century American medicine, it’s got to be plugged into the emergency-power grid.

I’m speaking, of course, of the computer. God forbid that patients should arrive at an emergency room, and not be able to have their medical-insurance information processed!

Now, I know the Care Center’s computer system does much more than handle insurance billing. Modern hospitals keep all sorts of medical information on their computer networks. Yet this particular terminal in the registration area, I’m quite sure, is used only for patient check-in – and this machine is evidently considered a high-priority asset.

I can’t say I’m surprised. At one time, insurance companies would have been considered peripheral to the work of medicine. Now, the machines that service their needs are right up there with the ventilators and defibrillators (or so it would seem).

I’m glad the computer terminal was still working, because it meant we experienced no delays, and Ania got to school on time. But it does set the mind to wondering...

May 31, 2006 - Rethinking Radiation

Second opinions are a fine thing, but what does a patient do when the two doctors differ on what must be done?

This is the question on our minds as Claire and I walk into Dr. Lerner’s office, CT scan and PET scan films in hand. In declining to recommend radiation treatments for me, Dr. Portlock seems headed in a slightly different direction than Dr. Lerner. How will he respond when we tell him?

Before I see the doctor, I must first see the nurses (this is standard procedure at Atlantic Hematology/Oncology). Not only am I due for a regular blood draw today, it’s also time for my implanted port to be flushed (a simple procedure, in which an anti-clotting solution is injected into my port, to keep it open and functioning normally). As part of the same procedure, the nurse draws a blood sample right through the port, thus sparing me a second needle stick.

Moments later, Claire and I are sitting in an examining room, waiting for Dr. Lerner, who shows up shortly. He’s interested in what Dr. Portlock had to say yesterday, and we tell him about each of the “4 Rs.” He concurs with her on two of these points: the fact that I’m now in remission, and the fact that long-term maintenance treatments with Rituxan are not advisable.

He expresses mild surprise, though, at Dr. Portlock’s judgment that radiation is not the best strategy. Generally, he explains, he recommends radiation for patients like me, who have bulky tumors that were 10 cm or greater in size before the start of treatment. The reason is that, should the cancer ever come back, it’s likely to appear in lymph nodes in the same general area where it appeared previously.

He supposes Dr. Portlock’s decision may have something to do with my initial pathology report, which identified both large (aggressive) and small (indolent) lymphoma cells. If she’s judging that the smaller cells predominate, it’s very possible that a “watch and wait” strategy makes the most sense. He’s been thinking more in terms of the aggressive larger cells, he tells us.

I tell him that Dr. Portlock invited us to have him call her, and he says he will.

The other item is the nodular growth in my right lung. Dr. Lerner takes out the CT scan films one by one, and scrutinizes them using a lighted display panel hanging on the wall. After examining these in silence, he tells us he’s “not very impressed” by the nodular growth. Reading over the radiologist’s report again, he reassures us that it’s not something we should worry about. Still, he concurs with Dr. Portlock that a pulmonologist ought to have a look at the pictures, as a precaution. He recommends I see Dr. Gustavo De La Luz, the local doctor I already see for my sleep apnea.

While he doesn’t say so directly, it becomes plain that Dr. Lerner is no longer planning on referring me for radiation treatments. My next appointment with him, he says, ought to be three months from now, just after I’ve undergone additional CT and PET scans. When we ask him if he’s sure about that, he says yes – but he’d still like to speak directly with Dr. Portlock before making a final decision. If we don’t hear from him differently, he says, we can assume that a three-month appointment it is. If he decides to stick with his earlier prescription for radiation treatments, he’ll let us know, so we can come in and see him sooner.

As Claire and I leave the office, we stop at the front desk and make the appointment for late August. On our way home, we stop for lunch at a local restaurant, the Java Moon Café, and talk together about how quickly things have changed for us. Just a few days ago, we were looking at the prospect of possibly debilitating radiation treatments for me, that would last well into the summer. Now, that blessed word “remission” is in the air, and we’re looking at a much earlier return to normalcy.

It begins to dawn on me that I’m entering a new phase of cancer survivorship. In the weeks and months to come, we’ll certainly celebrate my newfound freedom from the worst side effects of cancer treatment; but we’ll also begin to experience the new reality of wondering when – or if – the cancer may come back.

But that’s a problem for another day. Right now, the word “remission” is on our lips. And what a good word it is!