January 28, 2008 - Life Lost in Living

A friend shared with me an article from the Washington Post, dating back to 1998, about a 58-year-old man who was the speaker at his own funeral. His name was Alan Marks. He was diagnosed with mantle-cell lymphoma and given four weeks to live. He and his wife decided to organize his own memorial service, so he could experience that supportive gathering of family and friends himself, before he died.

Over four hundred people came out. There was something awkward about the experience, because no one had ever been to that kind of memorial service before, but the article reports that it was a love fest.

Reflecting on the rapid change in his perspective on life, Marks observed, “It’s so strange when we become aware that we’re talking about a very short period of time together, how the extraordinary becomes ordinary and vice versa. A good meal or a long walk has never meant so much before.”

I can remember feeling something like that, back during the early stages of my treatment. There I was, sick with chemotherapy, losing my hair, realizing how much my life had changed in such a short period of time. Even though my doctors were confident about my prospects, I was still very much aware that I had a life-threatening illness. I found myself thinking thoughts like those Mr. Marks shared with the newspaper reporter.

Suddenly, it became easier to live fully, in the present. I savored the taste of food as I never had before. I took time to do things I truly enjoyed doing, when previously I'd tended to put such things off, bending to the tyranny of the urgent. I sensed my marriage, my friendships, all my relationships with others growing stronger, as I gave them the time they truly deserved. It was possible, I remember thinking at the time, that I was dying. Yet, ironically, in some ways I felt more fully alive than ever before.

I can remember a brief return to that kind of thinking last summer, as the news of my relapse sunk in, but in all the long months of waiting ever since, I can sense that sharpened focus slipping away again. Life is pretty much back to normal. I’m back to measuring out my life in coffee spoons, as T.S. Eliot said in that famous line.

I’m not asking for a return to those days of struggle, but I do have to say that I miss the way cancer stripped away all the superficial distractions of life, for a time. It was a wise teacher, in that respect. Would that I could do a better job of making its lessons last.

Here’s T.S. Eliot again, from “Choruses from the Rock”:

The endless cycle of idea and action,
Endless invention, endless experiment,
Brings knowledge of motion, but not of stillness;
Knowledge of speech, but not of silence;
Knowledge of words, and ignorance of the Word.
All our knowledge brings us nearer to our ignorance.
All our ignorance brings us nearer to death,
But nearness to death no nearer to God.
Where is the Life we have lost in living?

Where, indeed?

January 26, 2008 - Gene Wilder on Non-Hodgkin Lymphoma

I came across this 8-minute video clip the other day, of film star Gene Wilder being interviewed on a British talk show (scroll down to view it). About mid-way through the clip (after recalling the death of his first wife, Gilda Radner, to ovarian cancer and his subsequent remarriage), Gene tells the story of his non-Hodgkin lymphoma treatment, which has left him in remission after more than seven years.

Although I have no way of knowing if Gene’s got the same sub-type of NHL as I do, his experience sounds, in many ways, similar to mine. He, too, had chemotherapy (9 rounds, rather than 6), plus Rituxan – although, after being told his cancer would come back eventually, he opted for an autologous stem-cell transplant. It’s touching how he tells of the hospital staff singing “Happy Birthday to You” on the day he received his new stem cells, marking the birth of a new immune system.

What I find most interesting is the name of his doctor, Dr. Carol Portlock of Memorial Sloan-Kettering – who, as it so happens, is my (second-opinion) doctor as well. It’s nice to know I’m going to one of the best.

January 24, 2008 - The Kids Aren't OK

Today’s headline tells the sad tale: “Veto Stands on Measure to Expand Health Plan.” Yesterday, the House of Re- presentatives failed – by just 15 votes – to override President Bush’s veto of a measure to expand the Federally-funded State Children’s Health Insurance Program (SCHIP). This bill would have sent additional money to the states, so they could offer free medical insurance to four million children who don’t currently qualify for this coverage. By all accounts, SCHIP is a highly successful program.

Defending his veto, the President has labeled the bill a waste of money, claiming it would have provided duplicate coverage to two million children who already have health insurance.

There’s good reason to question the President’s math. Does he actually expect us to believe that half of the four million children who would qualify for these benefits currently have medical insurance? What planet is he living on? These are low-income families, who struggle daily to pay the rent and put food on the table. Sure, a small number of these families may have employer-provided medical insurance, but it can’t be as many as he claims. Most low-wage jobs don’t offer medical insurance at all. If they do, coverage is available only for the employee, not dependents – and then, only through a hefty paycheck deduction that many families are forced to decline because they need the cash.

Even if the President’s math were correct, I’d still say, “So what?” Remember, these are poor families. With today’s sky-high health-care costs, even co-payments can be burdensome to low-income workers. I’ve known low-income families who have medical insurance, but who still choose to subject themselves to the long wait times and limited services of charity clinics because they can’t afford the co-payments charged by private physicians. Duplicate insurance that takes a bite out of co-payments wouldn’t be a bad thing in these cases, because it would move some of these families out of the charity clinics, easing the burden on these overcrowded facilities.

The article concludes by saying, “But the House Republican whip, Representative Roy Blunt of Missouri, said the bill was ‘aimed more at paving the way to government-run health care than making sure poor kids have access to adequate care.’”

Here, at last, is the truth. Some members of Congress – probably more than enough to override the President’s veto – voted against the bill because they see it as a stepping-stone on the way to universal health care. That means they’re using four million poor children as a political football.

For shame.

January 20, 2008 - The Song Goes On

During the worship service this morning, I pick up the hymnal that’s been set out for me on my chair, and I realize it’s got a name gold-stamped onto the front cover. It’s not my name. The name belongs to Carol, a former member of our church’s Chancel Choir, who died several years ago.

There aren’t too many personalized hymnals in our church, but the Chancel Choir does have a nice tradition of offering one to choir members who are celebrating significant anniversaries of singing with the choir. In Carol’s case, she qualified for that award a very long time ago, indeed: at the time she died, she had been a choir member for more than 50 years. I believe someone asked her sister, Ginny, if she’d like to have Carol’s personalized hymnal as a keepsake, and she declined – so, it made its way into the general supply of hymnals that we use in the sanctuary. From there, it made its way somehow onto the pulpit platform, and ultimately to my chair.

As I sing the first hymn, I find myself thinking about Carol. How many Sundays, I wonder, did she hold this hymnal? Now, it’s found its way into my hands. In a certain sense, I’m carrying on her song today.

That’s the way it always is with worship. Week after week the congregation gathers, but each Sunday it’s a slightly different group. As we lift our voices in song, a first-time visitor may be sharing a hymnal with someone who’s been a regular worshiper for dozens of years. When church members die, and – in the old euphemism – “join the choir celestial,” they’re no longer a part of our community here. But, we remember them fondly, and like to think of them as joining their voices with that company of which the book of Revelation speaks:

“Then I looked, and I heard the voice of many angels surrounding the throne and the living creatures and the elders; they numbered myriads of myriads and thousands of thousands, singing with full voice, ‘Worthy is the Lamb that was slaughtered to receive power and wealth and wisdom and might and honor and glory and blessing!’ Then I heard every creature in heaven and on earth and under the earth and in the sea, and all that is in them, singing, ‘To the one seated on the throne and to the Lamb be blessing and honor and glory and might forever and ever!’” (Revelation 5:11-13)

Ever since I unwillingly accepted the label of “cancer survivor,” I’ve become acquainted with certain other survivors who, well, didn’t survive. I remember them, though: their courage, their perseverance, their grit, their humor. One of the things you have to get used to, in cancerworld, is that there are a certain number of goodbyes. They go with the territory.

There are people I’ve become acquainted with through their cancer blogs, who are no longer with us. Some of these blogs I’ve monitored on nearly a daily basis, but then there comes a day when the entries abruptly stop. Usually, a family member posts a kind message, thanking all those who have followed the loved one’s progress, but informing them that the journey is ended. I’ve felt some sadness on such occasions – even though my acquaintance with the blogger was limited to cyberspace exchanges of mutual support.

Claire just learned, the other day, of the death of a man who had been part of our little band of cancer survivors who addressed the Genentech national sales meeting in Las Vegas a year ago (see my January 27, 2007 blog entry). I remember feeling impressed at this man’s positive attitude, despite the heavy odds he was facing (odds that were greater than mine, since he had a relatively rare cancer, and had already undergone a number of different rounds of treatment). He spoke to Claire and me about his church community that meant a great deal to him, and also about the joy he’d found in his relatively new marriage. The man was fairly bursting with life. Yet, now, death has claimed him.

Do such vibrant voices simply die away, like a forlorn echo? Or do they go on, in the providence of God?

As I look down at Carol's name, gold-stamped onto the hymnal's cover, I feel certain that they do. I can muster no evidence that would convince a determined skeptic. Yet, I feel that I know it to be true. "Blessed assurance," as they say.

We come round to the final verse:

"For Thy church that evermore
Lifteth holy hands above,
Offering up on every shore
Her pure sacrifice of love,
Lord of all, to Thee we raise
This our hymn of grateful praise."

January 15, 2008 - So, How Good Are the Odds?

A treatment that sounds rather similar to the one I was discussing with Dr. Donato and Dr. Feldman during my visit to Hackensack University Medical Center has just made the news. (“Gentler Chemotherapy Before Stem Cell Transplant Causes Long-term Remission Of Follicular Lymphoma, Study Suggests,” ScienceDaily, January 3, 2008.)

“Treating relapsed follicular lymphoma patients with a milder chemotherapy regimen before they receive a blood stem cell transplant from a donor resulted in long-term complete remission for 45 of 47 patients in a clinical trial, researchers at The University of Texas M. D. Anderson Cancer Center report at the 49th annual meeting of the American Society of Hematology.

The two patients who had relapsed after the treatment regained a complete response after additional therapy.

‘Our results show that this approach may actually be curative of follicular lymphoma,’ says lead author Issa Khouri, M.D., professor in M. D. Anderson’s Department of Stem Cell Transplantation. ‘No other treatments produce this type of response.’”

So, it seems that the “incurable” follicular lymphoma I now have may be curable after all. I recall hearing both Dr. Donato and Dr. Feldman use the words “potentially curative” when I spoke with them. This study gives a little more oomph to that word “potentially.”

Getting the cure, though – if, indeed, it is a cure – is not a simple matter. Stem-cell transplants are grueling in and of themselves, and they carry with them a certain risk of fatality (10-15%, according to Dr. Feldman). All my doctors are agreed that, in the absence of symptoms, there’s simply no reason for me to run that kind of risk. Better to keep on with “watch and wait,” and think about such treatments only later, at such time as my situation may have become more dire. Then, 10-15% may not seem like such a large, imposing number as it now appears.

Of course, new lymphoma treatments are emerging at a furious rate. Who knows if, by then, there may not be other treatments that are just as effective as stem-cell transplants, but without the drawbacks?

The jury’s still out on this new way of doing stem-cell transplants, however. 45 out of 47 does sound like pretty good odds, but – given the long-term nature of the disease – those 45 people have still not been tracked long enough for the researchers to be absolutely certain.

The results are promising, though. Very promising.

It’s getting to those results that’s the problem.

So, I wait and hope. What more can I do?

January 7, 2008 - Emotions and Cancer

Here’s an interesting news item, from a December 28th Reuters Health article:

"In a study that recorded conversations between 270 cancer patients and their oncologists, researchers found that patients broached the topic of emotional concerns only about one-third of the time. And when they did open the door, their doctors often failed to encourage a discussion.

The findings suggest that cancer specialists need more training in how to respond to patients’ emotional needs....

'Cancer patients should know their oncologists care deeply about them,' [researcher Kathryn Pollak] told Reuters Health. 'However, oncologists don’t always know how to verbalize that they care.'"

As a professional who does a lot of counseling, I consider this curious. Having been trained in empathic listening, I’m used to considering feelings in every sort of conversation. Physicians, though, are often trained otherwise. Some have even been taught to avoid the subject of feelings, as something that could detract from their clinical objectivity.

If there’s one thing I’ve learned about cancer, it’s that it’s a complex disease that affects every part of us. Just as there is a physical component of the disease, there is also an emotional component. As I rode the ups and downs of the chemo cycle, I was also riding the ups and downs of my emotions, as I struggled to find hope. There was anger, anxiety, sadness, even depression. Yet, when I came in to meet with my doctors, our discussions were usually confined to what old Officer Joe Friday on Dragnet famously called “Just the facts, ma’am.”

I take as much responsibility for this as my doctors. It rarely occurred to me to mention my emotional state as part of a check-up.

I know, of course, that an oncologist is not a psychiatrist – and I’m quite sure any of my oncologists would have been glad to refer me to a psychiatrist, had I expressed such a need. Yet, I have to admit, I don’t recall any of them even raising the question of the emotional response to cancer, beyond a general “How are you feeling today?”

I don’t fault them as individuals. It’s the system, that tends to fragment medicine into specialties, little walled gardens with too few gates connecting them.

As with any immune-system disorder, there’s lots of suggestive information that lymphoma may be influenced, at least in part, by emotional states. That would seem to suggest that treating the emotions ought to be part of the cure. Yet, who really pays attention to such matters? If the study reported in the Reuters article is accurate, then not many oncologists do. And, on the other side of the garden wall, how many psychiatrists see themselves as part of a medical team fighting a disease like cancer? Unless they work in a cancer center, they’re more likely to see themselves as stand-alone medical specialists.

Roger Granet, a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York, observes how the thinking about cancer and emotions has changed in recent years: “Once we thought that the body, where cancer cells run riot, and the mind or psyche, where emotions happen, were separate spheres. Now we know that they are but two manifestations of the same single being. Medicine can’t treat one without addressing the other.” [Surviving Cancer Emotionally (John Wiley & Sons, 2001), p. 11.]

Granet goes on to reject the idea that there’s such a thing as a “cancer personality” (as some have speculated) – one that’s especially prone to cancer. This sort of thinking, he points out, is especially destructive, because it blames the patient for being ill. It’s more accurate to consider emotions as influencing the recovery process: “There is strong evidence that emotional well-being improves quality of life during cancer and may even extend survival time. While the scientific studies in this area are not conclusive, they are suggestive” (p. 12).

My wife, Claire, works as Bereavement Coordinator for a hospice program, and has recently worked as a hospice chaplain. In both capacities, she’s been involved with ministering to emotional needs of patients and their families. The services provided by chaplains and social workers are built into the funding structure of hospice programs. This means that, indirectly, Medicare and other medical insurance programs fund most of Claire’s salary. Surely, though, those same insurers would balk at paying for counseling services routinely provided through an oncologist’s office. Why is it, I wonder, that insurance companies commonly consider emotional support for end-stage cancer patients to be worthy of funding, but not the support provided to healthier patients? Is treating a patient’s emotional state therapeutic only when there’s little to be done to improve the person’s physical condition?

It’s something worth pondering...

January 3, 2008 - Farewell, Santa

Interesting discussion, today, over at Leroy Sievers’ “My Cancer” blog. He’s reflecting on how many people he knows who have cancer. “How could this be happening to us?” he asks. “To so many of us?”

Leroy recalls an old episode of The Twilight Zone television show, one that took place during the Korean War. A soldier suddenly acquires the ability to predict when his comrades are going to die. He can see it in their faces, which take on an unearthly glow. Finally, in a typical Twilight Zone “gotcha” ending, he looks in a mirror, and realizes his own face is glowing, too.

Leroy’s voicing of the timeless theodicy question – the theological problem of human suffering – provokes an unusually vigorous and reflective run of comments today, from his readers. He’s evidently struck a chord.

I write in, too, citing Romans 8:31-19 (a text I’ve mentioned before, upstream, in my February 12, 2007 and November 7, 2007 blog entries). In the midst of a triumphant argument about God being in charge and that being a good thing, Paul inserts this incongruous line: “As it is written, ‘For your sake we are being killed all day long; we are accounted as sheep to be slaughtered.’” (v. 36). It sounds to me rather like Leroy’s anguished observation, “How could this be happening to us?”

Then, the apostle issues a defiant “NO!” “No,” he counters, “in all these things we are more than conquerors through him who loved us” – continuing on to proclaim that nothing, in earth or in heaven, can separate us from the love of God.

It’s a singularly realistic way of looking at the pain of this human life of ours. No rose-colored glasses, here. “Life’s an abattoir. Get used to it.”

But – and here’s the important point – all that slaughter, dreadful as it is, is not the last word. More triumphant, and more powerful still – more powerful than any other force in the universe – is God’s love. Love really does conquer all.

Is there an explanation for why some people get cancer? None that’s convincing (not that I’ve ever heard of, anyway). We need to face that reality head-on, and not try to obscure it with the smoke and mirrors of slick philosophical arguments. We face that reality with the love of God beside us. Supported by that all-conquering love, we ultimately prevail.

Lots of people still don’t get that, about Christian faith. They look at God as sort of a Santa Claus figure. Not that they believe in Santa Claus anymore – but, they look at Santa as kind of a minor-league wish-fulfiller, with God as the major-leaguer. Having become Santa fans at an early age, digging deep down into the toe of their Christmas stockings, they’ve transferred that naive, bless-me-now faith to their adult spirituality. Such a shallow spirituality may suffice for years, until something like cancer enters the picture. Then, it’s crisis time.

The God of the Bible is simply not like that. Sure, there are psalms that proclaim, “I believe that I shall see the goodness of the Lord in the land of the living” (Psalm 27:13), but there are plenty more passages that speak of the utter unpredictability and power of God. Jesus himself declares that God “sends rain on the righteous and on the unrighteous” (Matthew 5:45). There are simply no guarantees that life will turn out exactly has we hope, or dream, or expect. The only certainty is that God loves us through it all.

There are some preachers who dispense, in lieu of real spiritual food, a sugary concoction some today are calling “the prosperity gospel.” It’s pretty much God-as-Santa-Claus, and it’s not biblical (although they do their best to make it sound like it is, quoting verses out of context).

I’m not one of them. I’ve prayed beside too many hospital beds, and stood beside too many open graves, to dish out that kind of junk food from the pulpit.

So, farewell, Santa. You taught me some things worth knowing, when I was a kid, and I’ll always think of you fondly. But, I’ve graduated, you see. To a God who lets some bad things happen, in life, but who loves us anyway. Even in the valley of the shadow of death. Even in the chemo suite.

January 2, 2008 - Mileposts

Here we are, on the day after New Year’s. I spent New Year’s Eve at home with family – though I won’t say it was one of those proverbial quiet evenings at home. We had quite a houseful this year. Between Ania (and friends) back from college, and some of my in-laws up from Baltimore, we had a crowd. After an evening of hors d-oeuvres and board games, we stood around the TV screen, watching the Times Square ball drop. Then, the teenagers and young adults burst out onto the front porch with kitchen pot lids and spoons, and pretty much woke up the neighborhood (if, in fact, anyone was actually sleeping). Ah, youth!

The passage of time from New Year’s Eve to New Year’s Day is one of those non-events. The only people who feel any different on January 1st, as opposed to December 31st, are those who spent a little too much time in their cups the evening before. Otherwise, there’s nothing different about New Year’s. It’s a day like any other.

It seems important for us homo sapiens, though, to mark the passage of time with milestones like these, now and again. As contrived as events like the Times Square festivities are, they seem weighty with cosmic significance. The year 2007 will never come again. Hail and farewell.

For me, it’s hail and farewell to my year of relapse. I’m still in relapse, technically, but with the cancerous lymph nodes presenting themselves as stable, the worry of late summer has pretty much sputtered out, ending not with a bang, but a whimper. Maybe the cancer will crank up and do something again in 2008, but then again, maybe it won’t. The only certainty about 2008, it seems, is that the present ambiguity will likely continue for a while.

I’m going to have to learn to live with it. I figure I can, but it will take some doing. I learned to live with a cancer diagnosis, after all, and I learned to undergo chemotherapy. Surely, I can figure out how to live a life in which the only certainty is uncertainty.

There are others who live this way, of course – due to different sorts of health concerns, or a host of other reasons. It still feels a little new to me, that’s all. But, the newness is wearing off fast.

The words of an Irish toast seem especially appropriate:

“As we start the New Year,
Let’s get down on our knees
to thank God we’re on our feet.”

I’ll drink to that.