December 24, 2007 - The Widening of Time

I’m taking a break from writing my Christmas Eve sermon to add a few words here, about the holiday and about how I’m doing.

I just read an online update from Walt Wangerin, a Lutheran pastor and novelist who, like me, is dealing with cancer. (I previously mentioned Walt in my Februrary 12, 2007 entry). Also like me, Walt has been engaged in a hard, uphill struggle, but has now emerged onto a sort of plateau. He has gone from thinking death was near to realizing he will likely live quite a while longer.

Back on August 10th, when he was still feeling sick, Walt wrote these words:

“Time used to tumble for me. Like the mountain stream that breaks at the big rocks, spouts and plunges at speed from crags to canyons. Time was narrow and very fast.

Now Time has slowed to a stately progression. I measure it in day/feet – feet per day. For there are fewer days left to me and heavier feet for the passage. Slowth: it requires enormous patience. Slowth: a damming of anxiety. The consequence of a body restrained, slower than an infant's crawl. My motion by disease reduced to the child's eternal wait for good things far away.

On the other hand, slowth's no trouble at all. Where once Time tumbled, now Time has widened. Like the river that covers a broad plain. And the patience I thought was severity has become my benefaction.

I don't look forward so much any more, dashing to grasp the future. I look left and right. I've the Time, you see, to scrutinize all that is. And what is companions me.”

As of his most recent update (November 26th), Walt is in a very different place. Like me, he’s had reports from his doctor that indicates the cancer has not progressed further. Consequently, he’s now got a different perspective on time:

“...my more earthly anticipations are turning toward living as well, yes, yes, yes – and with them come back again the old responsibilities little and large, personal and public; come back anxieties over things unfinished, the sense of the terrible rush of time eating away my days, my plans, my hopes of completing this thing and that.”

I can attest, from my experience, that it’s a strange thing to return to ordinary life, after some time spent dealing with life-threatening illness. I feel, at times, like I can’t trust good news to be good. After spending a long time waiting for the other shoe to drop, it’s hard to avoid keeping an ear out for it.

Yet, as Walt observes, there are certain advantages that come from the perspective offered by the valley of the shadow of death:

“And there at the threshold of eternity my casual sins, the bitterness certain people have conceived and still hold against me, the unresolved, unresolvable troubles lingering in relationships – all these diminished. The lesser the time, the less pressing these. What a lightness of spirit such a shuffling off afforded me. How sweetly my preparations for death consumed me. How elemental, how simple the holy focus of my attentions. And I knew no fears that I might still wound my friends or aggravate my family. We were at peace. I didn’t have time to destroy that. Dying made me a very good man. And mortal sickness drew both patience and compassion, mercy and love from all those so dear to me.”

I’m sitting at the computer keyboard, listening to glorious music on the radio from the Festival of Nine Lessons and Carols from King’s College, Cambridge. There’s a timelessness to this beloved service: the soaring voices of the choirboys, the mellifluous, English-accented readings from the King James Version of the Bible, the beloved carols and anthems. It’s Christmas coming round once again: the same, year after year.

But, it’s also different. Two years ago, my Christmas was swathed in anxiety, as I was living into the reality of my diagnosis. Last Christmas, I took comfort in the fact that I was in remission. Now, I’m no longer in remission, but am on a similar sort of plateau to the one Walt now occupies. I could be here a very long time before undergoing further treatment, or perhaps it will be sooner. Only God knows.

The only thing to do is, as Walt says, to look for those places in life where Time widens, and attention is sharply focused on the things that make for peace.

Christmas can be such a time. As the organ music swells and choirboys sing on, I realize that.

A joyous Christmas to you!

December 21, 2007 - Not On Our Knees?

I’m thinking about something I read the other day in Leroy Sievers’ “My Cancer” blog on the NPR website. Leroy’s the TV news producer who’s been struggling against colon cancer that's advanced to his brain and spine, and whom Ted Koppel recently profiled in a documentary on cancer survivorship.

In his December 18th entry, Leroy’s musing on the subject of strength, and where we find it. “Where does the strength come from to keep fighting, even when the odds may be stacked against us?” he asks, rhetorically.

Then, he dips into his rich experience in news broadcasting to come up with a potent image: “Back when I was working in Latin America, one of the rules was that if you were stopped at a roadblock, you never got on your knees. Others, including journalists, had been forced to kneel. Then they were executed. So the thinking was, never get on your knees. Well, I may have bad days. I may be weakened by the pain. It may be all I can do to fight through the day. But with all of that, I'm sure as hell not getting on my knees. Ever.”

So speaks a man who’s had some grueling days of late, but who’s determined not to give up. I think he’s right. The only way to persevere as cancer survivors is for us to refuse to get on our knees.

Of course, from the Christian standpoint, I’d be quick to point out another meaning of the phrase, “on our knees.” Sometimes it refers to prayer. Now there’s an “on our knees” experience that doesn’t symbolize resignation or defeat. We’d all do well to get on our knees, in that sense.

Some look on prayer as a weakness. It’s the last resort. “Say your prayers,” growls the evil villain in the movies, before finishing off his victims. Yet, the most effective prayers are those uttered not out of panic, in extreme situations, but rather as a joyful, ongoing spiritual discipline.

Leroy’s right. We shouldn’t bend the knee to cancer. Not ever. Yet, there is one to whom we can bend the knee, without fear of being destroyed. It is this one who gives life, even in the face of a fearsome adversary like cancer.

“Happy are those whose strength is in you, in whose heart are the highways to Zion.

As they go through the valley of Baca they make it a place of springs; the early rain also covers it with pools.

They go from strength to strength...”

– Psalm 84:5-7a

December 19, 2007 - Government Listens to Lymphoma Community

I received good news in an email yesterday from Betsy de Parry, the lymphoma survivor who’s been active in promoting the letter- writing campaign to continue adequate Medicare funding of the radioimmunotherapy (RIT) drugs, Bexxar and Zevalin (thereby insuring the future availability of these drugs to everyone). Betsy’s sources tell her that new language has been added to the Senate bill that alters the funding formula for “therapeutic radiopharmaceuticals.”

What’s remarkable, Betsy says, is that this was virtually the only change to get into the bill. Congress has evidently been holding back on other amendments, in order to be sure President Bush will sign it.

It seems the e-mails and letters have made a difference. In Betsy’s words:

“I’ve heard from more than one staffer that if it had not been for our grassroots effort, this would not have happened. Every one of you played a part in this accomplish- ment! Every single phone call, every email, every fax, every signature on PAL’s petition helped to let Congress know that we could not sit idly by and watch these drugs disappear. YOU MADE THIS HAPPEN!”

Thanks again, to all the good friends who have contacted congressional representatives on this issue. You’ve helped to make a difference!

December 17, 2007 - Alternatives?

This evening I go to the monthly support group for the Leukemia and Lymphoma Society, held at The Wellness Community in Tinton Falls, NJ. It’s a good and spirited discussion – one of the best support group meetings I’ve been to in a long time. It’s a good mix of people. There’s a positive, affirming spirit among members of the group.

One of the features that makes it a good mix is that there’s a variety of viewpoints on the subject of alternative treatments. Tracey, our moderator (and an oncology nurse), does a fine job of keeping us all on track, striking the right balance of being directive on the one hand, and letting the group determine its own agenda on the other.

Maybe I’m climbing up on a soapbox, here, but I feel like I have to say something about the perpetual debate between proponents of alternative and traditional medicine. There’s a spectrum of opinion on this subject at tonight's meeting.

Putting all my cards on the table, let me say that I tend to favor the traditional-medicine side of the debate. I’m not against exploring alternative treatments, as long as they’re pursued in a complementary fashion – alongside traditional medicine (and keeping the traditional-medicine doctor fully informed), not in place of it. I take a dim view of forgoing something like chemotherapy – if the oncologists are recommending it – in favor of, say, chelation or wheatgrass cocktails.

No doubt about it, alternative medicine has a fashionable cachet, in many circles. Some cancer patients have an innate tendency to distrust traditional, Western medicine, and leap to embrace the latest alternative nostrum, as long as it’s got an adjective like “homeopathic” or “ayurvedic” attached to its name. Why is it that the chakras displayed on an ancient Indian anatomical chart should receive as much credence as the diagrams of the lymphatic system found in Gray’s Anatomy? (Granted, chakras have been guiding Eastern medical treatments for many centuries, but the same can be said of the now-abandoned “four humors” – choleric, melancholic, phlegmatic and sanguine – that used to guide Western medicine.)

It seems to me – and this is my personal hunch – that some people operate from a sort of conspiracy-theory mentality, when it comes to the results of clinical studies. They have a tendency to suspect that a shadowy cabal of traditional-medicine practitioners, for some nefarious purpose, is covering up evidence that alternative treatments work. (And we all know how hard it is to carry on an objective discussion with a true-believer conspiracy theorist.)

There’s also the issue of control. Receiving a cancer diagnosis is a loss-of-control experience. Where once we made all our own decisions – what to eat, how to spend our time – suddenly someone else starts issuing orders. Our days are no longer our own. Medical appointments take precedence over everything else. Our disease seems to be running our lives.

It’s no wonder that some may choose to rebel, scouring the internet for personal testimonies about how some diet or natural-foods concoction has brought about a remarkable cure. Most of these approaches are harmless, in the worst case – and could even be helpful, in the best. They’re worth trying, if the patient feels inclined to do so – but never (I say, anyway) as a substitute for traditional treatments.

There’s no doubt that, when it comes to research dollars, the lion’s share of the money does go to traditional medicine. Is this because those foundation, university and government officials who hold the purse strings hate alternative treatments, and want to suppress them? Or is it simply that they’re trying to be good stewards of their scarce research funds, seeking to direct them toward projects that – in their estimation – are most likely to reveal something useful?

A lot of the evidence commonly cited in favor of alternative treatments tends to be anecdotal in nature, based on the experience of a small number of patients. In many of these instances, it’s hard to say for certain whether it was the alternative treatment or some other factor – maybe even dumb luck – that led to a remission or cure. Without a broad-based, statistically-objective study – one that costs a great deal of money, in other words – it’s very hard indeed to get beyond the anecdotal, in assessing the real value of these approaches.

So, who ya gonna trust? The guy behind the counter at the health-food store, who claims to be certified as a nutritionist by some unaccredited training program? Or, an oncologist, who’s had a lot more education and a lot more experience?

My money’s on the oncologist.

December 15, 2007 - NPR Story on Bexxar and Zevalin

Here's a link to a December 12th story that appeared on National Public Radio, about the controversy over Medicare's funding of the radioimmunotherapy drugs Bexxar and Zevalin (see my November 14th, 26th and 30th blog entries, below). Clicking on the link will take you to the NPR website; then, you can listen to the 4-minute segment by clicking on "Listen Now."

To listen to the NPR story, click HERE.

December 14, 2007 – Cancer Terminal

I was reading the December 11th entry on T.L. Hines’ “Life With Lymphoma” blog, when something he wrote got me to thinking. In that entry, Tony ruminates on the word “terminal,” as applied to cancer. Turns out, somebody referred to him as “terminal,” because of a newspaper article that said his lymphoma (like mine) is considered incurable.

For the record, “terminal” and “incurable” mean very different things. “Terminal” means the end is near. “Incurable” means you’re probably going to have a disease for the rest of your life, which could be a very long time. Get the difference?

Tony points out that we hardly ever hear the word “terminal” used to describe any disease other than cancer. When was the last time you heard of terminal heart disease, or Parkinson’s, or even HIV-AIDS? If you tell people you’re going to give them a medical term , then fill in the blank – “terminal ______” – I’ll bet you dollars to donuts the answer will be “cancer.”

Tony observes: “‘Terminal’ has become synony- mous with ‘hopeless.’ And admit it, when- ever you hear the word ‘terminal,’ the word you immediately think of is always ‘cancer.’ The two are inextricably linked in our consciousness, and so in many ways, cancer is always terminal. Despite all the advances we’ve made in cancer treatment in the last few decades, I think that perception still exists among many folks: cancer is terminal.

I suppose, for me, that means I’ll always meet people who think I’m a Dead Man Walking. That means, when I tell these people I’m feeling great and doing well, and my treatment has a good chance of giving me a long remission or possibly even a cure, it will just be ‘Tony putting on a brave face,’ and these folks will know deep inside that Tony’s going to die of this cancer. And probably much sooner than he expects.”

I got to thinking more about that word, “terminal.” The truth is, life is terminal. None of us is going the cheat the Reaper.

Maybe we can transform cancer, in our minds, into a different kind of terminal. The word also refers to a train or bus station, a place that can be a jumping-off point for all sorts of wonderful adventures. They’re called terminals because that’s where the line ends. The trains pull in there, but they can go no further. The only way out is to back up. Smaller towns have stations, where the trains pause for a few minutes at a platform, then move on. Only the major cities have terminals.

I think back to the days when I was backpacking around Europe as a college student, railpass in hand. Every time I’d walk into one of those cavernous, Victorian-era rail terminals, I’d either be disembarking to explore a new city, or climbing aboard a train to head off somewhere else. A terminal wasn’t so much a place of endings, as a way-station on the journey to someplace else. As fascinating as the rail terminals were, with all their bustling crowds of international travelers, I never thought to linger there. Always I was eager to get on to the next thing.

I’ve found that, since getting diagnosed, I've traveled to all sorts of places I never imagined I'd go. Some of those places have been scary, some uncomfortable, others filled with wonderful, warm and compassionate people – but not a one of those places has been boring.

Maybe we ought to think not of terminal cancer, but rather of the cancer terminal. When we first get diagnosed, we often imagine it’s the end – and, truly, we’re barred from proceeding further in the direction we’d been headed. Suddenly, life becomes very different, as we move from doctor to doctor, test to test, treatment to treatment. After a while, though, we sense the train is ready to pull out. “All aboard!” cries the conductor, and we ascend the steps and find a seat in a compartment. Then, our train backs up for a while, before switching to an entirely different track.

Cancer’s often described as a life-changing experience. It’s been so for me, and for many others. Truly, cancer is a sort of terminal, a place where the tracks end and our journey ceases for a time. But then, the day does eventually come when we’re asked to board again, for a new destination.

For most of us cancer patients, that destination is a new and different phase of life, as cancer survivors. For a few of us, the destination is a far country, indeed – what we people of faith call life eternal. Either way, it’s not the end. It’s a beginning.

"People get ready,
there's a train a comin'
You don't need no baggage,
you just get on board
All you need is faith
to hear the diesels hummin'
Don't need no ticket,
you just thank the Lord."

- Curtis Mayfield, "People Get Ready," 1965

December 12, 2007 - Two Doctors

Today I have encounters with two doctors: one on the phone, one in person.

Just after lunch, I participate – along with about 2,000 other people – in a teleconference sponsored by the Leukemia and Lymphoma Society. Then, late this afternoon, I stop by Dr. Lerner’s office for a port flush, a blood draw and a consultation.

The teleconference features Dr. Wyndham Wilson, a senior investigator and head of the Lymphoma Therapeutics Section of the National Cancer Institute. He’s reporting on the recent national meeting of ASH, the American Society of Hematology.

He begins by calling this, in language only a medical researcher could love, “a very exciting and optimistic time for the treatment of lymphoid diseases.” In other words, even though many forms of leukemia and lymphoma (including my own) may be incurable, there are a number of effective treatments now available, and more on the way, that can keep these diseases under control.

There’s chemotherapy, of course. And, for some patients, radiation. Those treatments have been around for a while. But there are also monoclonal antibody therapies, like Rituxan (that I received along with my chemo), as well as the sub-category of radioimmunotherapy (Bexxar and Zevalin). There have been major advances in stem-cell transplants, especially the mini-transplants the people at Hackensack were talking to me about. New idiopathic vaccine therapies are on the horizon (those true designer drugs, customized for each individual patient); several major clinical trials of lymphoma vaccines have just finished, and the oncology world is eagerly awaiting those reports.

Dr. Wilson points out that this is the tenth anniversary of Rituxan’s approval for general use. Ten years is not a long time. It’s such a short time, in fact, that no one really knows about the long-term success rate of this miracle drug. That story is still being written, and I suppose I’m one of the people helping to write it.

There’s a revolution going on in genetic research. “Gene-expression profiling,” Dr. Wilson says, is a method of looking at the output of actual genes. This profiling can minutely examine every single gene in a patient’s tumor cell. By figuring out which genes are turned on and off in which patients, researchers can gain a better understanding of how malignant cells actually work.

So, there are lots of reasons to be optimistic.

Fast-forward to later in the afternoon. Dr. Lerner comes into the examining room where I’ve been waiting to see him. He opens my file, and begins reviewing the results of my last CT scan, now nearly a month old. Previously I had received a message from him, by telephone, that my tumors are stable – no larger and no smaller than in the previous scan.

“Is this normal?” I ask him. “Is this something you see very often?”

Yes, he responds, it’s pretty common in indolent lymphomas. This disease sometimes advances in fits and starts. Its progress can stall for a very long time, in some cases. Sometimes for years.

He asks me to hop up on the examining table, and feels in the usual places for enlarged lymph nodes: by the neck, in the armpits, near the groin. Dr. Lerner tells me he feels some enlarged nodes in my armpit, a location they hadn’t been before. “Don’t be alarmed about those,” he reassures me. “They’re nothing to write home about.” They’re small, in other words. Still well within the realm of watch-and-wait.

The doctor quizzes me about how I’m feeling. Fatigue? Night sweats? Pain? I have none of these symptoms to report. It’s all good.

He tells me he’d like to see me in March, but I’ll need to come in for my monthly port flushes in the meantime. Call a month before that, and ask the office staff to schedule another CT scan, he instructs me.

No problem. I can handle that. My cancer is still in a relapsed situation, but its growth has slowed to a snail’s pace. Take your time, lymphoma cells. Take your time. I’m in no rush.

December 10, 2007 - Not By Our Light

In the Zen Buddhist tradition, the most renowned teachers are those who, by adroit use of paradox and surprise, can teach lessons words alone could never bear.

A Zen master named Tokusan recalled how, when he was a student, he was visiting his teacher, Ryutan, in his hut. The two of them sat on the floor, drinking tea and discussing Zen deep into the night. After many hours of this, Ryutan said, "Perhaps it's time you went home."

Tokusan bowed obediently to his teacher and walked to the door. Standing in the doorway, he turned and remarked, "It's very dark outside."

Ryutan lit a lantern and suggested, "Why not take this?"

Just as Tokusan was reaching for the lantern, Ryutan blew out the flame.

Tokusan, it is said, suddenly understood the truth he was seeking.

Make of this baffling story what you will, at least it expresses the importance of light in our lives.

Light is a subject that was on my mind the other day, as I stood on a stepladder, hanging icicle Christmas lights from the eaves of our house. It was a nice day for it: unseasonably mild. If it weren't for those pesky little lights that always seem to get burnt out, causing whole sections of the string to go dead, I'd say I actually enjoyed the chore this year. (You'd think the light manufacturers would have solved this design problem by now – but no.) Anyway, when the task was finally completed, it felt good to go stand on the sidewalk and see how much the place has been transformed.

There's something deep in the human soul that looks for light, as the solstice approaches and the days grow ever shorter. We hang our feeble strings of lights, hoping to push back the night, but the task is futile. Our lights are as feeble as the Zen novice's lantern would have been, had his master allowed him to take it in hand.

When it comes time to venture out into the darkness of chronic illness, no human contrivance will be of much use. The light we really need comes from elsewhere.

I'm learning there's nothing I can do to light my own way through the darkness of this cancer journey. I can only look to the light that comes from above.

These lines of a hymn were written by William C. Dix on the day of Epiphany in 1860, as he himself was dealing with illness:

"As with gladness, men of old
Did the guiding star behold
As with joy they hailed its light
Leading onward, beaming bright
So, most glorious Lord, may we
Evermore be led to Thee....

Holy Jesus, every day
Keep us in the narrow way;
And, when earthly things are past,
Bring our ransomed souls at last
Where they need no star to guide,
Where no clouds Thy glory hide."

("As With Gladness, Men of Old")

December 5, 2007 - Land of Few Landmarks

People often come up to me these days, look me earnestly in the eye, and ask, “How are you feeling?” When someone words the question like that – rather than the generic “How ya doin’?” I know it’s more than just a casual inquiry.

“I feel fine,” I reply. “I have no symptoms.” I don’t mind giving that answer again and again. I appreciate the genuine concern behind the question. The fact that I keep getting that question, again and again, tells me my cancer continues to be on the minds of others.

There’s a paradoxical aspect to the watch-and-wait approach to cancer – which, I suppose, is the reason I keep getting the “How are you feeling?” question. Folks find it hard to wrap their minds around the knowledge that my cancer has relapsed, even though I don’t look or act any different than usual. Nor am I doing much of anything about it, other than going for scans every three months. Indolent lymphoma is sneaky like that.

So, the question is a sort of checking-in, to see if there’s any change, any new development that will confirm their prior impression that people with cancer ought to look sick.

Cancer survivors live with this sort of ambiguity, even when they’re in remission. Amy Bartlett is an NHL survivor in remission. In her December 4th posting to her blog, “I Choose Hope,” She writes this reflection on survivorship:

“So now, almost 9 months to the date (March 5th was diagnosis...), I am back in the real world. In many ways, it feels like I never left. I suspect that is because there still an ounce of disbelief in my head that this year actually unfolded the way it did. I often think to myself, ‘Did this year really happen?’ I'm being honest when I say that sometimes it truly feels like there is no way 8 months ago I was staring stage III cancer in the face. Did I really experience chemotherapy? Was I actually bald? Did I have the most amazing team rally behind me to cheer me across the finish line?

But, surviving is hard. This year my entire life has revolved around doctors, research, appointments, tests, results, emotions, and a bizarro kind of excitement. Now that most of that routine is behind me, at least in a daily/weekly regular sort of way, I find myself stumbling on how to just be the Amy I used to be. I wake up in the morning every day and the first thought in my head is ‘I wonder if I have cancer again?’ I hear people coughing and I think ‘I wonder if they have cancer?’ I go to bed and think ‘I hope I wake up tomorrow without cancer.’ I hear from other survivors that these feelings eventually do go away, never 100%, but there will come a day when I realize that I never thought about it. Not even once.”

Amy hits the nail right on the head, when it comes to survivor issues. It’s tough undergoing treatment, but the time after treatment is also tough (although not in the same way). It can be hard to re-enter normal life, after cancer. It takes time, and lots of it.

It’s hard enough for someone like Amy, who’s in remission, but for someone like me – who’s relapsed, but doing watch-and-wait – it’s even harder. My situation is ambiguous. There’s active cancer in my body, but my most recent CT scan says it’s stable. So, what am I? Am I sick? Am I well? Should I be more worried than I am? Am I worrying too much?

It’s a featureless terrain, this land of the cancer survivor. It can be hard – especially at first – to get our bearings, and figure out where we are, emotionally and otherwise.

But I press on. What else can I do?

December 4, 2007 - One in Five Lack Health Care

OK, the numbers are in. According to an article in U.S. News and World Report, a new report from the Centers for Disease Control estimates that 20% of Americans lack access to health care. That’s one person in five.

These statistics refer to people who “couldn't afford one or more of these services: medical care, prescription medicines, mental health care, dental care, or eyeglasses.”

Imagine yourself sitting on a crowded train. There are five seats in your row: two on one side, three on the other. One of those people sharing the row of seats with you can’t afford to get sick: because, if that happens, he or she will have to do without necessary medical care.

It’s more than just a lack of medical insurance. Some people who have rudimentary health insurance still can’t access essential medical services when they need them, because of high deductibles or co-payments, lack of transportation, a shortage of doctors in their area, or lack of organs for needed transplants.

Lack of insurance, the report says, is still the leading obstacle by far.

Yes, there’s such a thing as charity care. Doctors and hospitals give away millions a year in care to those who can’t pay for it, and that’s a wonderful thing. Yet, it can be hard to access charity-care services. Only the most savvy and persistent manage to break through the bureaucratic obstacles. Many more just stay away, neglecting to seek help until it’s too late.

Other nations seem to have solved this problem. Their systems aren’t perfect. Some restrict access to the most costly treatments or procedures, or make people wait a long time for them. But they don’t say to one person in five, “you’re on your own.”

This is America. There is a greater concentration of wealth in our society than in any other in human history, but still we can’t solve this basic problem. It’s not that we lack the resources, as a nation. We lack the will, and we lack the courage.

Shame on us.

December 2, 2007 - Alive Day

“A shoot shall come out from the stump of Jesse,
and a branch shall grow out of his roots.”

– Isaiah 11:1

Today’s a significant anniversary for me. Two years ago today, I was diagnosed with Non-Hodgkin Lymphoma.

I had known for several months beforehand that lymphoma was a possibility. December 2, 2005 was the day when Claire and I sat in Dr. Lerner’s office and heard him confirm that my biopsy results indicated a malignancy, and that I would have to start chemotherapy within a few weeks.

It was a day that changed my life.

Since then, I’ve undergone port-implantation surgery, received chemotherapy, lost my hair and regained it, gone into remission, gone out of remission, and – more recently – pondered the meaning of the word “stable” (which describes the result of my latest CT scan). I’ve acquired a thorough layperson’s knowledge in the biology of cancer. I’ve learned things about the medical-insurance business I never wanted to know. I’ve participated in support groups, seminars, teleconferences and fund-raisers. I’ve been a guest speaker at a drug company’s national sales meeting. I’ve learned to give help, and receive it. I’ve tested the foundations of my faith, and found it firm enough to support me through tough times. I’ve come to appreciate church and family in new ways.

In short, I’ve learned to survive.

I understand that soldiers who go to places like Iraq or Afghanistan, and return home seriously wounded, often speak of their “Alive Day.” It’s not so much the day they were wounded, as the day they looked around and realized they were still alive, and were going to make it after all.

No soldiers celebrate their wounds, but some do celebrate the anniversary of their Alive Day. It was a day when, as perhaps never before in their young lives, did they feel so grateful to be alive.

Maybe my diagnosis day is my Alive Day. I wouldn’t pretend that what I’ve gone through, as a cancer patient, is at all similar to the dreadful suffering of some of these brave men and women who have returned home minus limbs, or with head wounds that have robbed them of normal cognitive abilities. Yet it is a turning-point, all the same: a great divide between life-as-it-once was and life-as-it-is-coming-to-be.

As I enter my third year as a cancer survivor, what’s ahead? Only God knows.


“My times are in your hand;
deliver me from the hand of my enemies and persecutors.

Blessed be the Lord,
for he has wondrously shown his steadfast love to me
when I was beset as a city under siege.
I had said in my alarm,
‘I am driven far from your sight.’
But you heard my supplications
when I cried out to you for help.”

– Psalm 31:15, 21-22

December 1, 2007 - Secrets of the Pyramid

Today I come across a helpful and attractive website, belonging to a group called the Cancer Recovery Foundation of America. It’s got a lot of useful information for cancer survivors.

The thing that’s most intriguing to me is a rather simple teaching tool called the Cancer Recovery Pyramid. It’s modeled, I’m sure, after the nutritional pyramid used by the Federal government.

I like several things about this model. First, spirituality is foundational. It’s the broad base on which everything else rests.

Second, the next level pairs attitude and support, which are indispensable both to recovery and to each other. Keeping a positive attitude is central to cancer recovery, but it’s not everything. Those who are successful at living with cancer, in my experience, are those who also reach out and build connections with others. They know the importance of both nurturing their existing intimate relationships and establishing new ones with fellow cancer survivors.

Third, the pyramid emphasizes nutrition and exercise. If there’s any part of the pyramid that’s my personal weak point, it’s this level. I do know, though, that when I eat right and get to the gym regularly, I feel better.

Finally, medical treatment is at the top of the pyramid. This is where it should be. There are some who emphasize alternative therapies to the point where they’re neglecting, or even contravening, medical advice. These are the people who are inclined, by nature, to jump on the bandwagon of each new bit of wacky, word-of-mouth advice that comes their way. They are constantly getting their hopes up and seeing them dashed just as quickly. It’s better to think not of alternative therapies, but of complementary therapies – those pursued in coordination with the best medical advice.

At the same time, it’s worth noting that the area occupied by medical treatment is the smallest of all. As vital as medicine is (symbolized by its position at the top of the pyramid), it’s a paltry response indeed if the other areas are not also in place, forming a solid foundation. Patients who walk into the doctor’s office spiritually grounded, supported by healthy self-esteem and by their families and communities, and taking good care of their bodies are best-equipped to live with cancer.

These are some things I see in the Cancer Recovery Pyramid. Whether all these observations were intended by the pyramid’s creators to be there, I don’t know. But that’s what it says to me.

Now, if I could only do better with that diet and exercise thing...

November 30, 2007 - Progress on Bexxar and Zevalin

Thank you to all who wrote to government officials about the Medicare reimbursement policies for the radio- immunotherapy drugs, Bexxar and Zevalin (see November 14th, below). It seems the flurry of lobbying activity has had some effect. It’s too early to declare victory, but there are some encouraging signs.

The Lymphoma Research Foundation reports, on their website, that the Senate Finance Committee leadership is preparing a Medicare and Medicaid measure that will be considered by the full committee next week. It includes a one-year freeze on reimbursement levels for Bexxar and Zevalin.

It takes a lot of money to develop a new drug. Some is put up by the pharmaceutical company during research and development. The rest is paid afterwards, by consumers and their insurance companies. It’s scary to think that effective medicines could be pulled from the market if insurance reimbursements drop too low.

Let’s hope that won’t be the case with Bexxar and Zevalin.

Another Way for NHL Patients To Fight for RIT Drugs

I'm posting this e-mail message here as a public service to other patients with forms of NHL that are potentially treatable with the radioimmunotherapy (RIT) drugs Bexxar and Zevalin. Betsy de Parry, a lymphoma survivor and activist, is inviting comments on her blog, which lobbyists in Washington can use to tell Congress about real cases like ours. If you have NHL and are concerned about the possible disappearance of RIT drugs like these, please visit Betsy's blog and post a brief comment there, including basic details of your situation.

(Scroll down to my November 14th entry for more on this issue. I'm including another link to the Newsweek article by Jonathan Alter, that explains this complex issue. CLICK HERE for that article.)

Thanks!

***

Hi All,

As you all know by now, Bexxar and Zevalin are seriously threated. I've been talking, almost daily, with lobbyists in Washington who are working to have the ruling overturned, and they are telling me that hearing from patients is helping them to convince the staffers. They suggested posting a blog and asking people to make comments which they could then print and take to their meetings.

Thus - if any of you want to voice your opinion - short and sweet is fine - you can do so on my blog which is at www.lymphomablog.blogspot.com

We have very little time to accomplish this mission - if the ruling is not overturned by 12/31, it takes effect on January 1. So, language has to be written into a bill which then has to pass before 12/31. Let's hope that push/pull/shove politics doesn't stand in our way.

Thanks so much,

Betsy

P.S. Ok, this is a long shot, but several people, including senator's offices, have said that good old-fashioned protests work because the press usually picks up the story - and what could be more heartbreaking than cancer patients pleading for drugs to save their lives? Karl Schwartz is organizing one for next Thursday in front of Senator Specter's office in Pennsylvania. Does anybody want to think about going to Lansing and protesting in front of Stabenow's office? I'll do it if at least 9 or 10 others want to join. Or in any of your own states?

November 24, 2007 - Tree Farm

This afternoon, we pile into the car with various family members and drive to Conover’s Christmas Tree Farm in Wall Township, to pick out our tree for this year. Besides Claire and myself, it’s Ania (visiting from California for the Thanksgiving holiday); Claire’s brother Victor and his two kids, Chelsea and Nick; and our niece, Elizabeth, who lives with us.

We’re not going to bring a tree home today. We’ll wait till it’s closer to Christmas. By going out now, though, we can tag ourselves a good one, and know it will be ready for us as the holiday grows closer.

Eventually, our tree will sit off to one side of the Manse living room, where it will be ready for the youth-group Christmas carolers to sit around, when they return for hot chocolate after singing for some of our church’s homebound members. It will be the centerpiece of our family Christmas celebration too, of course.

It’s an ideal day – sunny, not too cold. We walk up and down amongst the rows of trees, searching out the ones that still display the two-part paper tags indicating they’re unclaimed. After a good bit of walking, we call everyone together for a consultation, settle on a tree that seems tall enough and full enough, then tear off the lower portion of the tag.

It’s interesting to observe the differing sizes of trees. Here and there you can see where the farmers planted a row of 6 or 8 trees of one particular type, that are of similar heights. Other places, you can see where a tree has been cut down in the past year or two, and has been replaced with a seedling.

This is not a business for people who thrive on instant gratification. To operate a Christmas tree farm, you’ve definitely got to take the long-term view. Evergreens are comparatively fast-growing trees, but still it takes 6 or 8 years before they grow big enough to grace someone’s living room. Most other agricultural operations have an annual harvest. In the Christmas-tree business, you plant your seedlings, then you watch and wait.

I’m learning to take a big-picture view with my cancer treatment, as well. My indolent cancer cells are growing, but slowly (or perhaps, with the “stable” results from my last CT scan, they’ve plateaued for a little while). There’s a part of me that wishes for a swifter resolution, in the form of some immediate treatment, but that’s not going to happen. Beating this thing is a long-term proposition. Like tree farmers, we’ve got to think in terms of years.

For today, though, it’s a nice outing with the family. A little normalcy. Life is good.

November 21, 2007 - Just Give Thanks

Tonight’s Thanksgiving Eve. Unlike all my earlier Thanksgiving Eves at this church, I’m sitting at home, rather than leading a worship service.

That’s because the Session, our congregation’s governing board, decided some months ago to cancel this year’s Thanksgiving Eve service. (We moved our Thanksgiving focus to the previous Sunday’s worship service, instead.) The numbers of Wednesday-evening worshipers had been dwindling for years. When we reached the point where there were fewer people in the pews than in the choir loft (many of those people being family members of the singers), we decided it was time to bag this many-decades-old tradition. The people had voted with their feet long before. The times they are a-changin’.

I was reluctant to cancel it, myself. Of all the special worship services we offer throughout the year, the Thanksgiving Eve service has always been one of my favorites. It was simple, low-key, and somehow pure. No Santa Claus or Easter Bunny hanging around the edges of people’s consciousness. Just give thanks, that’s all.

But, we’ve been facing increasing pressure from the burgeoning football- related activities from Point Pleasant Beach High school next door. When school officials moved the homecoming parade from late afternoon to evening, several years ago – blocking nearby streets and using them as the staging area for the floats – that meant on-street parking places were at a premium. Here in the suburbs, folks think having to walk a couple of blocks is a terrible inconvenience. Numbers were dwindling for other reasons, besides. Some of our regulars were traveling, and others were stressed out about getting pies into the oven for the next day’s feast.

I think the Session made the right decision: but, still, I miss it. I miss it especially because I think giving thanks is therapeutic. It moves our attention away from ourselves and our complaints, and onto God.

The Japanese poet Issa is considered to be among the greatest writers of Haiku. Issa’s very last poem was discovered in 1826, written on a scrap of paper under the pillow of the bed on which he’d just died. It was winter, and Issa had been sleeping in a crumbling storage shed, after his own house had burned down. Here’s what he wrote:

There are thanks to be given:
this snow on the bed quilt -
it too is from Heaven.

I don’t know what they wrote on Issa's tombstone, but it could very well have been, “Here lies a happy man.”

There have been snows falling in my life, as well – the chilling awareness of the cancer within me. My spiritual growing edge is in learning to give thanks even for some of the experiences that cancer is bringing into my life.

Another great poet, Robert Louis Stevenson, experienced his share of suffering: he died a slow death of tuberculosis. Here’s some advice he once gave:

“The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life.”

A profound sentiment, and an example for us all. Happy Thanksgiving!


“I will give thanks to the Lord with my whole heart;
I will tell of all your wonderful deeds.”

- Psalm 9:1

November 19, 2007 - My Cancer's Better Than Your Cancer

This evening I attend the monthly blood-cancer support group at The Wellness Community, sponsored by the Leukemia and Lymphoma Society. There are about eight of us, sitting around in a circle. Our facilitator is Tracie, an oncology nurse: well-informed, and relentlessly upbeat. Various blood cancers are represented: B-cell lymphoma (that’s me), T-cell lymphoma, multiple myeloma, Hodgkin lymphoma, chronic lymphocytic leukemia (CLL), acute myelogenous leukemia (AML).

Introducing herself, a woman with newly-diagnosed CLL says, “They tell me I’ve got the good cancer.”

A woman with Hodgkin lymphoma responds, “They told me I’ve got the good cancer.” There are smiles all around, as we recognize the macabre form of one-upmanship. Nobody wants to get into a game of “My cancer’s better than your cancer.” What would be the point?

Sometimes oncologists do say that sort of thing, in an effort to be encouraging. I’ve heard it myself from Dr. Lerner, who told me, at the time of my NHL diagnosis, “If you have to choose a form of cancer to have, this is the one to choose.”

It sounds suspiciously like the sort of situation some parents get into, as they tell each of their children in turn, “I love you best of all.” They don’t, of course. They love all their kids equally. But they think at the time it’s an encouraging thing to say, and for some reason it doesn’t dawn on them that the kids will ever talk to one another.

Is there a good cancer? Of course not. What the doctors mean, when they say such a thing, is “Yes, you’ve got a dread disease, but I think I can help you. I’ve got a lot of treatments to choose from, and can probably keep you in remission longer than you think.”

Support groups are wonderful, but they’re really not for making comparisons. They’re a place for honest sharing and for listening. The trick is to focus exclusively on the person speaking, and try to avoid saying, “He’s better off than me,” or “She’s worse off than me.” At their best, these groups are a place not only for exchanging practical information, but also for giving one another the precious gift of listening.

From what I’ve experienced so far, this group is a good one.

November 15, 2007 - Stable

I’m thinking, today, about a word I heard yesterday on the telephone: the word is “stable.” I was speaking to a nurse from Dr. Lerner’s office about the CT scan I had last Thursday. I hadn’t heard any results, so I thought I’d give a call and find out what they’d heard from the radiologist. When the nurse called back a little later, she said Dr. Lerner had asked her to pass on the message that my cancer is stable.

“Stable, as in no growth?” I asked.

“Yes, it looks just the same as your last scan,” she replied.

I asked her to repeat it, just to be sure. “This is good news,” she reiterated. “No growth.”

I’m not scheduled to see Dr. Lerner until December 12th, so I won’t have an opportunity to question him in detail until then. For now, I can only receive this update with guarded optimism.

It’s not completely good news. The cancer’s still there, after all. But, I’ll take “no growth” over the alternative, any time.

I’ve had other scans when the results were “no change” – but these were all while I was in remission. This is the first time I’ve been out of remission and had the “no growth” result.

That means there’s active cancer inside me, but it’s not doing much of anything. It’s just hanging around, like gang members on a street corner. The cops may be eyeing them nervously, but there’s nothing they can do. Just stay vigilant.

So, that’s where I am right now. The cancer is still there, but it’s stable. While it may be menacing, it’s not immediately dangerous. So, we just continue to keep an eye on it.

During my sabbatical year, I spent a week on retreat at the Benedictine Monastery of Christ in the Desert, in northern New Mexico. Reading about the Benedictine Order in preparation for that experience, I recalled something I’d learned in church history class, back in seminary: that stability is considered a good thing in the monastic world. It’s a positive virtue. The Latin word they use to describe it is statio, as in “stationed” or “stationary.” On one level, it means a monk typically resides in a single monastery for life. Requests for transfers from one monastery to another are never granted casually, and then only for a good reason. On another level, statio suggests an island of peace in a chaotic world. It’s a stoic determination to make the best of where you are, to bloom where you’re planted, to praise God for life and receive it thankfully.

So, my cancer is stable. The spiritual challenge for me, in these days, is in learning to practice that sort of statio in my own life. As always, it’s a question of learning to live with cancer. Those leather-jacketed toughs are going to be lounging around for a while, it seems. I guess I’d better get used to them.