March 22, 2009 - Waeger Still Wins

Another cancer survivor whose blog I’ve been following has succumbed to his disease. Dan Waeger, a young man with lung cancer, died last Monday, March 16. I’m a little behind on my blog reading, so I only just realized it.

(Prayers and good wishes go out to you, Meg. From your blog, it certainly does appear that you and Dan had a very special relationship indeed. No doubt you’ll miss him terribly.)

The blog Dan and his fiancee Meg have been writing is called, “Waeger Will Win.” Less than a week before Dan’s death, Meg wrote a little reflection on the meaning of winning, when it comes to cancer.

She was recalling something she’d heard Lance Armstrong say at a conference. Lance was relating a brief conversation he’d had with the chairperson of his foundation board. “This is fun,” said the executive to Lance, caught up in the enthusiasm of whatever project they were working on.

“It’s only fun if we win,” replied Lance.

Lance Armstrong is, of course, one of the most competitive people on the planet. It’s no wonder he’d view the work of curing cancer as the biggest, baddest bike race of all.

Meg offers a different perspective. She has some wise words to share about winning:

“But when Lance said that to the Livestrong audience, I remember thinking that judging victory in cancer solely by ‘winning’ is maybe worth another look. After all, many cancer survivors, like Dan, don't see the ultimate victory in being cured. There are 100s of cancers, and to ask for a cure sets a high bar, and one that may be unrealistic in our lifetime. This is not a ‘one-size-fits-all’ solution. Many cancer survivors would be ecstatic if their cancer could be managed as a chronic disease - like diabetes or AIDS. Or if genetic testing could even narrow down the treatment options so that they avoid toxic and crippling treatments as a cruel form of trial & error.

The day I heard Lance speak was about 3 weeks after we’d found out that Dan’s cancer had spread. I knew that even then, if Dan’s ‘win’ could only be fun if he was cured, than we were in trouble. If he passed on from cancer, we would surely say that he ‘lost his battle.’ But as many of you’ve pointed out, Dan’s story isn't a straight win/lose scenario. There are more ways to win than just judging the score.”

Indeed. In this life, there are winners and there are winners. Some win by conventional means, edging out a host of competitors by crossing the finish line first. Others start winning from the first moment they leave the starting line, regardless of the outcome.

We can be winners in the here and now, not just in the distant future. From everything I’ve read of Dan Waeger, he seems to have been one of those people who began winning from the first day of his diagnosis.

Faith helps create winners like Dan, of course. The Apostle Paul has something to say on that topic:

“But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. So death is at work in us, but life in you.” – 2 Corinthians 4:7-12

Clay jars. Amphorae, they called them – ordinary, everyday vessels used in the ancient world to carry water, wine and all manner of other liquids. To Paul’s readers, clay jars were about as exciting as Tupperware – and just as commonplace.

Yet, this is the image he chooses to describe the treasure of the Gospel – the very treasure that enables God’s people to be “afflicted... but not crushed... perplexed, but not driven to depair,” and so on.

In the world of cancer, the winners are not only those competitors who go charging across the finish line, pedaling furiously. Somewhere back on the racecourse a rider sits under a tree, dozing in the summer sun. He will not open his eyes again. He will not cross the finish line. He doesn’t need to. The finish line has come to him.

(To Meg and all of Dan’s circle of family and friends: blessings be upon you in these days of goodbyes. Remember what goodbye means: “God be with you.”)

March 21, 2009 - Let's Hear It for L19!

Here’s a very encouraging article about an exciting new approach in B-cell non-Hodgkin lymphoma treatment. Thanks to Dr. Wendy Harpham for sending me the link.

Swiss researchers have found a way to use a human antibody called L19 to recognize and target newly-formed blood vessels that occur in tumor tissue.

The team of researchers, led by Dr. Dario Neri, used rituximab (the same monoclonal antibody I received along with my CHOP chemotherapy) in conjunction with L19. From the article:

“The success of the Neri team’s new therapeutic approach relies on the ability of the immunocytokine L19-IL2 to attract and activate certain white blood cells, including the so-called natural killer cells, towards the tumor, thus potentiating the therapeutic activity of rituximab.”

Early trials using the new approach with mice were encouraging, then the scientists were able to replicate those results in humans. In the before-and-after PET scan images below, all the black spots, indicating active lymphoma, disappeared following treatment (the remaining dark areas in the right-hand photos are the brain, heart and bladder that always show up dark in PET scans):

Now, the researchers are moving on to develop the treatment for more widespread use. New medications using L19 are in phase I and II clinical trials, according to the article.

Yes, indeed - there are good things coming down the research pipeline!

March 15, 2009 - Magical Thinking

Reading in Dr. Wendy Harpham’s After Cancer: A Guide To Your New Life, I come across a passage I think may speak to my situation. Ever since my cancer treatments ended, and particularly so since I went out of remission, I’ve found it difficult to plan for the future. I’ve tended to take things as they come, responding much more passively than ever I used to.

It’s a consequence, I’m sure, of the disorienting experience of going from reasonably good health to treatment for a life-threatening disease. During my treatments, I suddenly found myself wondering if I’d ever get to do the things most people expect to do in their middle and later years: see my children get married, be blessed with grandchildren, experience further professional advancement, retire, leave a legacy of some sort, etc. Suddenly, it seemed like everything could be abruptly cut off. I found myself grieving things I wasn’t even sure I was going to lose.

Since entering remission – and then, after that, the uncertain, watch-and-wait period I now find myself in – I’ve outwardly returned to normal activities, and even taken on a few more. I’m crazy busy, having thrown myself back into not only my pastoral duties and my part-time seminary teaching, but also taking on new work as our presbytery’s Stated Clerk. I’ve made myself so busy, in fact, that I don’t have to look very far into the future. (How convenient.) Just keeping up with the present is taking all my energies.

Perhaps I’m pursuing what Wendy calls magical thinking:

“Planning for the future means having confidence that the plans will come to fruition. You lost a lot when you got cancer. You feel vulnerable. You want to protect yourself from avoidable loss and pain. If, on any level, you are insecure about your future , you will feel anxious when you start to make plans, because you do not want to lose any more.

Sometimes a component of magical thinking makes it difficult for you to make plans. You may feel that if you make plans, you are setting yourself up for a problem that will sabotage the plans. ‘If I don’t make plans, there won’t be any plans to get ruined. If there are no plans to ruin, I won’t get cancer.’” [Wendy Harpham, After Cancer: A Guide To Your New Life (Norton, 1994), pp. 288-289.]

A little later, she gives this sage advice:

“Waiting for everything to be back to normal before you see yourself as really living is a waste of precious time. There is no time like the present.” [p. 298.]

Things are never going to get “back to normal” for me, medically speaking. Even if I enter into a solid remission and stay there, I’ll still have to keep going for scans, facing the reality of a possible recurrence. The only sensible response is to keep on living, in spite of it all.

Easy to say. Hard to do...

March 13, 2009 - Message of Hope from David M. Bailey

A song lyric, today, that singer-songwriter David M. Bailey just sent around in an e-mail to his fans:

“Well it ain't any fun when they tell you you have cancer
And it sure don't help when they say they have no answer
At the time you'll think it is the greatest curse
Let me tell you there is one thing that's worse
If they tell you it was gone but now it's back
When you thought you'd won but you're still under attack
Talk about taking the wind out of your sails
It's only tragic if you're thinking that hope fails
Because hope, my friend did not let you down
No, it carried you across the rocky ground
And it set you on this water that you know
It will hold you til the breeze begins to blow
Don't you worry if the tide is still too low
The day will come when your courage starts to grow
Before long you will see it overflow...”

I’ve written about David before. He’s a brain cancer survivor, who’s been going through some rough stuff of late, as he’s had to go for further surgery.

He seems to be bouncing back from that (I understand he’s begun performing again), but I’m sure there are days when the realities of his situation get him down – which gives birth to lyrics like this.

One of the things I like about his song lyrics is his determination to live from hope:

“When the rain comes down let the little light burn
Keep on to the point of no return
Decide that you will do more than survive
Each day is a chance for you to thrive
And thrive you will if you make that your choice
Faith, hope & Love still need a voice...”

Here’s a homemade video of David singing a song he wrote just 9 days after his brain surgery:



Keep on giving voice to the faith, hope and love that keep you going, David. Our good wishes and prayers are with you.

March 9, 2009 - More Questions About Maintenance Rituxan

Steve, a reader of this blog, reminded me of a 2006 European study that found “dramatic” results in follicular NHL patients who were receiving maintenance Rituxan treatments. Unlike the one I cited yesterday, this study includes patients who have received R-CHOP.

Those patients in the study who received R-CHOP, and who subsequently received maintenance Rituxan, experienced an average of 52 months without their disease progressing – as opposed to 23 months in the control group. That’s more than double the time.

That raises a lot of questions for me. My disease has already returned, but it’s not doing much of anything. Every time I go for a scan, the verdict is, “Still there, but no bigger.” Dr. Lerner has me on “watch and wait,” the reasons being that (1) my slightly enlarged, malignant lymph nodes are doing no immediate harm, and (2) when they get large enough to treat, there’s a high likelihood that a second round of chemo will put me back into remission (and, if I receive a stem-cell transplant instead, there’s even the possibility of a cure).

I don’t know whether starting on Rituxan-only treatments is still an option for me, at this stage – everyone in the research studies presumably began receiving them right after their chemo. Even if maintenance Rituxan is still available to me (and if we could convince the insurance company to fund it), I’m still not sure it’s the best idea. Dr. Lerner’s cool-under-fire strategy of waiting till we see the whites of their eyes before we start blasting away appeals to me.

Questions, questions. What if? When? Why? Why not? You never get away from the questions, when you’re a cancer survivor.

“Wait for the Lord;
be strong, and let your heart take courage;
wait for the Lord!”

– Psalm 27:14

March 8, 2009 - The Treatment I Didn't Get

Today I run across a Reuters news article about rituximab (trade name, Rituxan), the monoclonal antibody drug I received along with my chemotherapy. It seems a research study has just demonstrated good results for “maintenance therapy” with Rituxan – in other words, continuing treatment with the drug over time, even after the cancer has gone into remission:

“An improved disease response was seen in 22% of rituximab-treated patients versus just 7% of control subjects....

Three-year progression-free survival was also higher in the rituximab group: 68% vs. 33% in controls. In the subgroup of 282 patients with follicular lymphoma, the corresponding rates were 64% and 33%. Higher overall survival rates were seen in the rituximab group as well, although the differences fell short of statistical significance....

‘Observations from this study inform the design of future studies and add to a substantial body of evidence that the combination of rituximab with chemotherapy is a new standard for patients with indolent lymphoma who require treatment,’ the authors conclude.”

At the time my R-CHOP chemotherapy ended (the “R” in R-CHOP stands for Rituxan), I was aware that some patients were continuing to receive monthly treatments with Rituxan for a year or more, as a preventative measure. This was, and continues to be, somewhat controversial. At several NHL patients’ conferences I attended, the medical experts making the speeches said the jury was still out on whether or not maintenance Rituxan does any good. With the tremendously high cost of this medication, many medical insurers had labeled it “experimental,” and were not funding its use in maintenance treatment. (I never took the matter up with my insurance people, because Dr. Lerner didn’t recommend maintenance Rituxan in my case.)

Well, now the jury has filed back into the courtroom and delivered their verdict: maintenance Rituxan does work – at least for indolent NHL patients who have had the CVP chemo regimen (cyclophosphamide, vincristine and prednisone). The researchers didn’t focus on patients who’ve had the CHOP chemo cocktail, rather than CVP – although, since vincristine and prednisone are two out of the four drugs in CHOP, I would think there’s a pretty good chance maintenance Rituxan would have improved my long-term prognosis, as well.

This raises a lot of unanswered – and probably unanswerable – questions for me. Chief among them is, if I had received maintenance Rituxan, would my remission have lasted longer than it did?

Hindsight, as they say, is 20/20. I’m not going to run off and ask Dr. Lerner about maintenance Rituxan now, but it does give me something to think about. Maybe I'll ask him what he thinks of this article, next time I see him...

March 7, 2009 - A Cure for Cancer? Not.

“We’ve launched a new effort to find a cure for cancer in our time.” Those were President Obama’s words at Thursday’s Healthcare Summit in Washington.

A few days earlier, he said much the same thing in his address to Congress.

This sort of promise by a politician is not new. Richard Nixon proclaimed as much, back in 1971. It’s stirring rhetoric, and I certainly applaud the intentions behind it, but the promise is very likely impossible to fulfill.

The reason? Cancer isn’t just one disease. All the experts are saying there’s no magic bullet, no wonder drug like the Salk polio vaccine, that will suddenly send the nation’s oncologists scrambling to find a new medical specialty.

Cancer is dozens of diseases, maybe even hundreds. Yes, it’s characterized by the tendency of certain cells to grow uncontrollably, rather than shuffling off to die (as their genetic programming would ordinarily direct them to do). Yet, the causes of this cellular misbehavior are legion. It’s highly unlikely that a single, miracle cure is out there, waiting for some enterprising researcher to uncover it. Why, it’s even unlikely there could be a single cure for non-Hodgkin lymphoma – which, by all accounts, is a family of dozens of different diseases.

That’s no reason to stop trying, of course. Surely, there are cancer cures waiting to be discovered, through even modest increases in research funding. If the political slogan, “finding a cure for cancer,” is what it takes to build support for this cause, I’m surely not going to stand in the way.

So, Mr. President: when it comes to rallying Americans to support the cause of healthcare reform, particularly increased funding for cancer research, I say, “Go for it!” Yet, when you hold out the dazzling prospect of a single cure for cancer, I’ll consider that more of a rhetorical flourish than a statement firmly grounded in medical fact.

March 2, 2009 - Power of Blog

One of the tough realities of following cancer blogs is that, from time to time, someone you’ve come to know and respect in this strangely intimate medium dies. This is what’s happened in the “Clusterfook” blog written by Lisa, a young wife and mother who’s been dealing with ovarian cancer for several years now.

One of the last topics Lisa blogged about was what she called “power of blog” – a concept similar to power of attorney, but having to do, instead, with who would take over her blog. As she entered hospice care, she had to find someone to whom she could entrust her username and password, so as to inform the blogosphere of her death.

Her husband is not evidently much of a computer person, so she turned to a fellow blogger. On Saturday, February 28, Lisa’s friend, Karl, posted news of her death.

Just over a month ago, Lisa mused about the reactions of some readers, who said they found her blog “too depressing.” I never had that reaction, myself, as I read her words. I found Lisa consistently blunt and down-to-earth as she described her decline in health, but she seasoned those grim facts with a quirky sense of humor and a passion for living her days to the fullest.

Here are a couple of excerpts from that post of January 26:

“As heart breaking as death is, I’m doing O.K. with everything that’s happening. Do you hear any ‘woe is me?’ in my writing? Do I sound like I feel sorry for myself? Am I crying out for pity?

No, no and no.

Every day I strive for inner peace and so far I’ve found it. I consider myself one lucky chick-o-dee, perhaps I should say I’m a blessed chick-o-dee to have such calm and inner peace.

That’s not to say that I don’t cry. Crying is a release of emotion for me but I’m not crying every day. Usually I cry when having deep, heartfelt discussions with family members and friends. Those moments when we are brutally honest about how we feel about each other and say to each other the things we should be saying but usually never have the courage to say. Then the day comes when it’s too late to say what we’ve always wanted to say.

If you ask me, it’s a gift to have those opportunities right now. My advice to you is don’t wait until you are facing death to tell those dear to you how you really feel about them. Whatever is holding you back…let it go.”

In a post just prior to that one, Lisa related what it had been like to tell her 8- and 11-year-old girls (whom she calls by the pseudonyms “Cam” and “Teeny”) that she was dying:

“Telling Cam and Teeny the truth, that I’m not going to get better, was one of the most heart breaking things I’ve ever had to do. It is NOT easy to tell your children that you are dying. Listening to them cry was one of the worst things I’ve ever heard. Not being able to fix it is the worst feeling in the world....

Dude [that’s her blogging nickname for her husband] and I decided to deliver the news to the girls last Saturday afternoon, a few hours before they had to go to church. Teeny has been consistently lighting a candle for me every week and she finds a lot of comfort in going to mass with Dude. Cam doesn’t complain about going nor does she get real excited. Dude and I thought they might find some extra comfort in going to church after talking to us earlier in the afternoon.

I’ve been too sick to go to mass for a while so Dude takes the girls by himself. He said that each girl was snuggled up as close and as tight to his side as they could be during mass. And of course, Teeny lit a candle as she always does. When she got home she told me that she still believes in the hope that I’m going to get better. God, how I wish that little ray of sunshine was right....

My kids are strong but they have been dealing with cancer in their lives for five years. I hope the lessons they’ve learned and continue to learn make them stronger and don’t scar them. Although how do you tell an 8 and 11 year old there’s a lesson to be learned when their mom dies?

Well, I’ve got them surrounded by great people and a good support system that I hope pulls through for them. That’s how you do it.”

Lisa’s blog has a subtitle: “It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.

One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.

Yes, it is what it is. And, sometimes, it can even be beautiful – like Lisa’s indomitable spirit. Truly, that’s the “power of blog.” Prayers and good wishes go out to all who love Lisa and miss her.

February 27, 2009 - Something There, All Right

There’s something there, all right.

This morning I go to Ocean Medical Center for my thyroid ultrasound. The test itself is a breeze – I’m in and out of there in less than 10 minutes.

The technician asks me if the doctor told me anything about what she’s supposed to look for. I explain that the PET/CT scan picked up an abnormality on the thyroid, probably some kind of nodule.

Which side is it on?

That, I don’t know.

She commences to scan. I’m lying on my back, looking up at the ceiling, while she squirts a little warm gel at the base of my neck and commences to move the handheld scanning device around.

When she gets to the left side of the thyroid, she finds it. A roughly circular dark area. She shows it to me on the screen. “I can’t say for sure,” she tells me, “but it’s my guess that’s what they’re looking for.” I notice she’s dragging the cursor across that part of the image, doing some measurements.

“How big do you figure it is?

“A little less than a centimeter.”

No surprises, there. They saw it on the PET/CT, and here it is again. I find it hard to understand how the grainy ultrasound picture gives the docs any better resolution than a CT scan, but the ways of radiology are exceeding strange.

I believe this is the very same room I was in when I had my abdominal ultrasound back in the fall of 2005, that started this whole process for me. My feelings today, though, are 100% different. Back then, I was clutching that prescription script from Dr. Cheli that read, “Suspect lymphoma” and anxiously wondering what all this meant. Today, I’m a veteran of a great many tests and scans, most of them much more onerous than this simple procedure.

The vast majority of thyroid nodules, I’ve learned, are benign. So, no sense borrowing trouble.

As Dr. Wendy Harpham reminded me in a comment on my last entry, one small silver lining on the cancer cloud is that you do get scanned all the time, which means there’s a greater chance of picking up any further problems – even unrelated problems – at an early stage.

I should learn more next week. I wonder if another biopsy is in my future, or if they’ll be able to tell from the ultrasound alone what sort of nodule this is....

February 21, 2009 - And Now, For Something Completely Different...

Yesterday I received a phone call from Dr. Lerner, who gave me some good news and some bad news. The good news is, my recent PET/CT scan reported no change with my lymphoma. It’s been that way for a while now. My indolent disease is continuing its shiftless ways, which is just fine with me.

The bad news is, the scan picked up some abnormalities on my thyroid gland. Dr. Lerner wants me to have an ultrasound of the thyroid, to check it out.

He didn’t sound too concerned. In fact, he said he didn’t think it was much of anything, but he wants me to have the ultrasound just to be sure.

I heard Dr. Lerner use the word “adenoma” as an explanation for what this could possibly be. On the web, I found this description from a medical textbook:

“Most [thyroid] nodules rather than being cancer (carcinomas) are actually tumorous collections of benign cells variously called adenomas or adenomatoid nodules.

Whether nodules are ‘cold’ or ‘hot’ on thyroid nuclear scanning relates to their ability to trap and collect radioactive substances such as radioactive iodine or other radioactive elements used in nuclear medicine. These isotopes are either swallowed or injected intravenously and their extraction from the blood and concentration within the nodules causes the areas corresponding to the nodules to show up as black ‘hot’ spots on the scan image.

Hot nodules are rarely cancer and most often represent benign follicular adenomas. In addition, such hot nodules may in fact be overproducing thyroid hormone and may cause hyperthyroidism. The larger the ‘hot’ nodule the more likely it will be associated with hyperthyroidism.”

I thought about asking him some questions about various scenarios that could ensue, but thought better of it. He’s not going to be able to tell me anything, I reasoned. That’s why he’s asking for the ultrasound. You’re just going to have to suck it up and wait.

So, that’s what I’m doing. Dr. Lerner is going to have someone from his staff call me next week, to set up an appointment at Ocean Medical Center. Then, it will be more waiting, while the radiologist interprets the results and shares them with Dr. Lerner.

I’m not feeling too concerned about it. Seems like “waiting” is my middle name, these days. Several years ago, I might have gotten anxious, but after undergoing a couple of biopsies plus chemotherapy, an ultrasound is a piece of cake. I’m actually feeling more anxious about the wisdom tooth I’m scheduled to have my dentist extract on Monday.

It’s just another test. I’ll be hoping that, like all the other recent scans I’ve had, this one, too will prove to be of little concern.

February 19, 2009 - Wisdom to Survive

Today I’m reading an article from Newsweek, written by Chesley B. “Sully” Sullenberger III, Captain of U.S. Airways Flight 1549, who piloted his plane to a successful emergency landing in the Hudson River. Captain Sullenberger is a national hero, of course. His story of coolheaded competence and courage has spoken in some remarkable ways to a nation grown weary, and wary, of its leaders.

His tale of survivorship says a few things to those of us surviving a different sort of crisis.

First, although I used the word “hero” to describe him, it’s a word he shies away from:

“As my wife, Lorrie, pointed out on 60 Minutes, a hero is someone who decides to run into a burning building. This was different – this was a situation that was thrust upon us. I didn’t choose to do what I did.”

Cancer, too, is thrust upon us. We don’t choose it. Although some are quick to describe us with words like “courage” – maybe even “hero” – it’s not a mantle most of us wear comfortably. We didn’t run into this particular burning building. We woke up smelling smoke, and now we’re trying our best to find a way out of the place. Just because we’re not running around yelling and screaming doesn’t make us especially courageous, or heroic.

Second, Captain Sullenberger has something to say about what it takes to get through a crisis:

“During every minute of the flight, I was confident I could solve the next problem. My first officer, Jeff Skiles, and I did what airline pilots do: we followed our training, and our philosophy of life. We valued every life on that airplane and knew it was our responsibility to try to save each one, in spite of the sudden and complete failure of our aircraft. We never gave up. Having a plan enabled us to keep our hope alive. Perhaps in a similar fashion, people who are in their own personal crises – a pink slip, a foreclosure – can be reminded that no matter how dire the circumstance, or how little time you have to deal with it, further action is always possible. There's always a way out of even the tightest spot. You can survive.”

Indeed. We can survive. When bad news comes, when frightful challenges arise, we may feel for a time like we’re headed for disaster. There are things we’ve learned, though – or can learn – about survivorship. Such wisdom we can fall back on, when the engines flame out and we feel ourselves suddenly descending. Just follow our training, and our philosophy of life. These things will see us through.

“Those who are wise shall shine like the brightness of the sky, and those who lead many to righteousness, like the stars forever and ever.”
– Daniel 12:3

February 14, 2009 - Could the Stakes Be Any Higher?

One of the hardest treatments for us cancer patients to wrap our minds around is stem cell transplants. The biology of DNA is so intricate, and the calculation of the odds of success so complex, that making a decision about whether or not to pursue such treatment is a monumental task.

David Arenson, a chronic lymphocytic leukemia (CLL) survivor, does as good a job of writing about this as any. You can read his effort in his February 13 blog entry. Although he has a different disease than mine – leukemia vs. lymphoma – CLL and NHL have many similarities.

David describes his decision-making process as “like looking through Mr. Magoo glasses and saying there are objects in the sky twinkling at night without knowing which are stars, which are planets, and which are airplanes passing by.” Then he goes on to describe, in rather greater detail than you’d expect for a scientific layperson wearing Magoo glasses, just what some of those celestial objects are. The acuity of his vision is sharper than most, despite the disclaimer.

The decision as to whether or not to go for a stem-cell transplant is always a tough one. There are trade-offs – not exactly “damned if you do and damned if you don’t,” but something along those lines. Here’s how David describes it:

“There is an anonymous quote I ran across that sums up my opinion: ‘There are always two choices. Two paths to take. One is easy. And its only reward is that it's easy.’

Dragging out the chemo is the ‘easy’ choice here, but in a way it is also the hardest. It is a personal statement that ‘I accept that CLL will shorten my life, and that I will live three, five, maybe eight more years.’

Making the ‘hard’ choice to go for transplant is saying, ‘I know there is a reasonable chance that I could be cured of CLL and I am willing to accept the risk of getting killed in the process, or living with inconvenience afterward, in order to have a longer life.’”

David is 52: the same age as me. He’s at a prime age for a stem-cell transplant and will be for some time. Yet, the older he gets, the worse the odds become. His disease is evidently more aggressive than mine, but not so aggressive as to lead his doctor to stare him in the eye and say, “For God's sake, man, go for the transplant, or you won’t be alive next year.” It’s something of a roll of the dice, and no one can advise him definitively on what decision to make.

Go for the transplant now... wait a few years and see how the science develops... reject the whole idea because of the nasty things runaway graft-versus-host disease (GVH) could do – it’s not a simple either-or choice, but rather a whole spectrum of options.

What it comes down to, when all the complex genetic calculations are completed, and the national donor registry has been searched with a fine-toothed comb, truly is a roll of the dice. And the stakes could not be higher.

You have my sympathy, David – and in a very personal way. I could very well be sitting where you are, at some point in the future.

February 11, 2009 - Time: On My Side?

Today’s my PET/CT scan. It’s routine, but – as always – there’s low-level anxiety as I prepare to await the results.

At Jersey Shore University Medical Center, the PET/CT machine sits on a trailer pulled up to a sort of loading dock at the hospital. It’s here a few days a week, and at other hospitals the rest of the time. (I think I heard a tech say this one migrates between here and Massachusetts.) That’s how expensive these machines are – nobody can afford to have them sit unused for any length of time, so they take them on the road. Deals on wheels, for the hospital bean-counters.

I think it’s a pretty ingenious solution, actually. You know, bring the mountain to Mohammed, that sort of thing.

My visit is utterly unremarkable. I’ve had 3 or 4 PET scans in the past, so I know what to expect. First, I get jabbed in the fingertip to have my blood sugar tested (no diabetic worries, the tech tells me, peering into her little handheld device: my blood sugar is 94, which she says is excellent). They have to do the blood sugar test because the PET scan centers around an injection of a radioactive glucose solution, which – the theory goes – gets sucked up by any ravenous, fast-growing cancer cells, which are subsequently revealed to the scanner’s inquisitive electronic eye. (It wouldn’t be a good idea to send sugar solution racing through the bloodstream of a diabetic, which is why they do the precautionary test first.)

Next is the injection itself, which is no big deal: an IV line inserted for a few minutes, to receive the injection from a syringe enclosed in a shiny, lead-lined cylinder (this, to protect the technician from frequent exposure; we patients – who are getting the radioactive slurry injected right into our bodies – are on our own).

After that, I sit quietly in a chair for 45 minutes or so, while the stuff makes its way through my body. Then, it’s time to lie down on the narrow, sliding table whose motorized works will trundle me in and out of the donut-hole of the scanner.

The hardest thing is lying on my back absolutely still for a half-hour or so, with my arms extended over my head. It’s not the most comfortable pose to hold, despite the best efforts of the PET-scan techs to position me just right. (Fortunately, I have no claustrophobia problems, which could be an issue for some people as they lie inside the scanner, looking up at the top edge of the donut-hole just a few inches in front of their nose.)

On other visits, they’ve had relaxing, new-agey mood music playing through the unit’s PA system. This time, they’ve got the thing dialed to some classic-rock radio station, complete with commercials – not the most optimal programming for getting through the long minutes of lying still. I find the best way to get through this sort of experience is by seeking to go somewhere mentally far away, which soft instrumental music helps me do. No help from the rock-music deejays, on that account.

One of the songs that comes on is the Rolling Stones’ “Time Is On My Side.” “Time, time, time is on my side, yes it is," croons ol’ Mick.

Is it, I wonder? Am I continuing to stay ahead of the curve, on this cancer thing? Or, will this scan reveal something new and disturbing?

No way of knowing, at the moment. “So do not worry about tomorrow, for tomorrow will bring worries of its own. Today’s trouble is enough for today.” (Matthew 6:34)

February 7, 2009 - Dumbth

Yesterday I slit open an envelope mailed to me by Care Allies (formerly Intracorp), the agency that pre-approves medical tests for my insurer, Highmark Blue Cross-Blue Shield. I guessed what it was before I opened it: a routine pre-approval for the PET/CT scan I’m having this coming Wednesday.

I usually take only the briefest of glances at these letters and put them aside. As long as I see the blessed words, “we have determined that the requested services are medically necessary,” I figure I have nothing to worry about.

This time, though, I saw something in the description of the test that concerned me. The letter reads:

“APPR: PET IMAGE W/CT, SKULL-TH 78815”

“They’ve made a mistake,” I thought to myself. “Care Allies has approved me for a CT scan of the head – not the scan of the neck, chest, abdomen and pelvis I typically have. This could be trouble, if they’ve approved me for the wrong procedure.”

I went right off and dug up the paper script Dr. Lerner had given me. That made me even more concerned, because I didn’t see anything there about neck, chest, abdomen and pelvis. The handwritten script reads:

“JSUMC, PET/CT Scan, DX: Lymphoma for restaging.”

“JSUMC,” I know, means “Jersey Shore University Medical Center.” “DX” means “diagnosis.” But it sure looked to me like Dr. Lerner had left off the list of body parts that are essential to a CT scan prescription. (Previously, I’d had problems with a Care Allies CT scan pre-certification that mentioned some body parts, but omitted the others.)

I called Dr. Lerner’s office and was put through first to someone in the billing department, then to one of the nurses. She said she’d do a little checking, and called me back a few minutes later. There’s nothing to worry about, she assured me. Everything was submitted correctly. Because this is a PET/CT scan and not just a CT scan, it’s automatically a scan of the whole body, so individual sections of the body don’t need to be specified.

“Then why does the letter I received from Care Allies mention the skull?” I asked.

“The ‘TH’ probably stands for ‘thorax,’" she replied. "It’s a PET/CT scan, skull-to-thorax.”

Mystery solved. But why, I’m led to wonder, can’t the people at Care Allies who compose these letters to patients avoid using arcane jargon and abbreviations? It seems to defeat the purpose of such a letter, which is communicating with non-medical professionals. I’m not sure, actually, that even for medical professionals “TH” would scream out, “thorax.” Clearly, this letter serves the needs of the insurance bureaucrats rather than the patients.

The late comedian Steve Allen once wrote a book called Dumbth, in which he catalogues a whole lot of misuses of the English language that are, for lack of a better word, just dumb. Its title is a word of Allen’s own invention, that describes writers’ thick-headed refusal to recognize that words they’re using just aren’t communicating. His definition:

Dumbth (pron. dumth) adj: a tendency toward muddleheadedness, or willful stupidity appearing in all segments of American life

Thank you, Care Allies, for thoughtfully seeking to communicate the details of the medical procedure for which you’ve pre-approved me. I’m afraid I have to nominate you, though, for the Dumbth Award, for your clumsy way of communicating that makes life needlessly difficult for patients like me.

February 1, 2009 - Authority

My, but I’ve been busy. With my seasonal teaching gig at New Brunswick Theological Seminary still under way, I’m now working three jobs. Besides serving as pastor of the church, I’m also working part-time as Stated Clerk of the Presbytery of Monmouth (a Presbytery is a regional governing body in the Presbyterian Church, sort of like a diocese in the Roman Catholic Church). A Stated Clerk is like corporate secretary, archivist and parliamentarian rolled into one. In early January, there are all kinds of end-of-the-year reports to complete, and as a newbie Clerk, I’m learning how to do them for the first time. Bottom line is, I’ve scarcely been able to think about a blog entry, let alone write one. Until this afternoon.

Today in worship, I preached about authority. My text was Mark 1:22, “They were astounded at his teaching, for he taught them as one having authority, and not as the scribes.”

During the second service, I learned about one of the pitfalls that go along with authority – at least, authority of the pastoral kind. Robin, our church’s associate pastor, had called in sick today, so I was up there all by myself, except for one of the junior-high youth who did a fine job reading the Old Testament Lesson. When it came time for the New Testament Lesson, I guess my mind was wandering, because I skipped it. Just blew it off. There was a long silence, as I just sat there. I was sure Sara, our organist – filling in for our absent choir director today – had lost her place in the service. Finally, she just moved on, launching into the choir anthem, while I continued to sit there, blissfully unaware of my blunder. When I arose to give my sermon after the anthem, it was – still unbeknownst to me – sans New Testament lesson.

The curious thing about it is – nobody told me about it. Not, that is, until I was shaking hands at the church door much later, when about the twentieth person in line gently asked, “Did you mean to skip the New Testament lesson?” Most of them knew all along that I’d goofed, but nobody felt bold enough to correct me on it.

Pastoral authority is a funny thing. When you stand up there and speak for God Sunday after Sunday, sometimes folks get a mite confused. They can be hesitant to point out errors they wouldn’t think twice about correcting, had a lesser mortal committed them.

The icing on the cake came after I walked back up the aisle, and was making ready to leave the Sanctuary by the exit nearest the church office. Little Sara, the three-year-old granddaughter of our organist, was standing there. When she saw me, she gave me a wave, then a big grin that would light up the darkest of days. “Hi, God!” said she.

I’ve been addressed as “God” before, by kids her age. “Jesus,” too, on occasion. (Never “Holy Spirit,” but I suppose the third person of the Trinity is a harder concept to grasp.) This just goes with the territory of ministry. It’s an understandable error for little minds to make, as they try to puzzle out what church is all about. Their parents tell them they’re going to “God’s house,” and after looking at the same guy standing up front in that funny-looking costume week after week, they make the logical connection.

I corrected her, of course. Her grandfather, who was standing nearby, thought it uproariously funny. The story was already making the rounds at the Communion Breakfast in our fellowship hall, by the time I made it over there a few minutes later.

“Doctors playing God” is a stereotype in the medical world. There’s even a corny old joke about that. A famous surgeon dies and goes to heaven, but finds quite a crowd of fellow new residents lined up in front of St. Peter’s imposing desk. The minutes tick by. The line’s moving very slowly indeed. The doctor, who’s been something of a V.I.P. in his earthly life, is starting to get impatient.

Finally, a man with a long, white beard, clad in a lab coat with a stethoscope around his neck, goes barreling up to the desk, passing right by the long line of applicants. Giving St.Peter only the briefest of nods, he strides right through the pearly gates.

The distinguished physician has had enough. He walks up to St. Peter and says, “I’d like to lodge a complaint. Some of us are doctors, too, and we’ve been waiting a very long time.”

“You don’t understand,” replies St. Pete. “That wasn’t a doctor. That was God playing doctor!”

(Sorry, I couldn’t resist.)

I imagine most docs hate that line about playing God. I figure most of it comes not from the doctors, though, but from the patients. All of us wish, in our heart of hearts, our medical caregivers had godlike qualities of omniscience, omnipotence and benevolence.

They don’t, of course. They’re only human. It’s a good thing for us patients to pay attention to what our medical caregivers are doing, and to ask questions when it appears something important has been omitted. Authority doesn’t carry with it infallibility.

We’re partners in this healing thing, after all.

January 22, 2009 - Method in the Madness?

I’ve been in Bradenton Beach, Florida this week, attending The Homiletical Feast – a preaching conference I attend each year. Not that Florida has offered any balmy weather: it’s been as low as 32 degrees here this week. The exegetical papers we’ve considered in the group have been high-quality, as usual, and the discussion and mutual support has been more valuable than words can say.

These 16 or so ministers are among my most valued colleagues. Over the years, they’ve become friends as well. We only meet once a year, but the four days we spend together are a time of talking, sharing and supporting one another, as we reflect on this demanding occupation.

Earlier today, one of my colleagues shared a poem by Larry Smith called “What You Realize When Cancer Comes.” He found it on Garrison Keillor’s The Writer’s Almanac program on American Public Radio. Here’s an excerpt:

“You will not live forever – No
you will not, for a ceiling of clouds
hovers in the sky.

You are not as brave
as you once thought.
Sounds of death
echo in your chest.

You feel the bite of pain,
the taste of it running
through you.

Following the telling to friends
comes a silence of
felt goodbyes. You come to know
the welling of tears.

Your children are stronger
than you thought and
closer to your skin.

The beauty of animals
birds on telephone lines,
dogs who look into your eyes,
all bring you peace.”

The poem ends with these words:

“You are in a river
flowing in and through you.
Take a breath. Reach out your arms.
You can survive.

A river is flowing
flowing in and through you.
Take a breath. Reach out your arms.”

The poem causes me to reflect on many of the things I’ve lived through, these past three years or so. One of the things I’ve struggled with, off and on, is the question: “Why?” What purpose is there in all this?

Smith’s poem captures the transformational aspect of cancer. When those of us who undertake this journey – however unwillingly – complete it, we are not the same people as when we began. Every step we take along the road changes us.

Thinking theologically, I’m led to ask once again what long-term purpose God may have in mind for my ministry. In allowing me to get this disease, curing me from its aggressive variety, then miring me in the interminable limbo of indolent lymphoma’s “watch and wait,” what’s God’s point? If it’s true, as we Presbyterians are inclined to think, that God calls men and women to ministry, then what call could there possibly be in cancer?

The Larry Smith poem suggests some possible reasons. “You will not live forever.” I have a visceral awareness of this truth, now, that has hitherto been a mere abstraction. “You are not as brave as you once thought.” No, indeed I’m not. I’m learning to live with uncertainty, and still rise to the challenges of daily living. “You can survive.” Yes, I can. I’m doing it. One day at a time.

I’ve had some difficulty sensing God’s will in the midst of follicular lymphoma. Aggressive cancer I can understand: it’s a challenge to be met, or die trying. Cured cancer I can likewise understand: it’s a triumph to be celebrated. But, this neither-here-nor-there, neither healthy-nor-unhealthy limbo, stretching on into the interminable future: what’s God up to?

Maybe the purpose is to nurture my empathy, my ability to connect with others. I’m not the only person whose life is fraught with ambiguity, is lived out in the gray country of uncertainty. Maybe I’m meant to be a fellow-traveler and accompany others. Maybe I’ve been enrolled in a school of perseverance, so I may help others persevere.

January 16, 2009 - Leadership: It's Personal

The recent news about entrepreneur Steve Jobs’ sudden medical leave from Apple Computer brings back memories for me. When you’re in a very public sort of job – like CEO of a company, or pastor of a congregation – there isn’t much of a right to privacy. You’re doing more, professionally, than just filling a box on an organization chart. Personality and profession are all wrapped up together. When you get sick, people feel they need to know.

Steve Jobs has pancreatic cancer. So far, he’s been one of the truly fortunate ones. Not only is he still around, more than 4 years later, but – except for several relatively brief absences – he’s thrived, remaining at the helm of the innovative company he founded. Now, Mr. Jobs has announced he’s taking another, longer leave to see to medical concerns – at least until June.

Apple stock has plummeted. It must be a terribly difficult spot to be in, knowing the stock analysts are watching him like hawks (or vultures?), ready to issue “sell” orders at the least sign of physical weakness. For a man like Steve Jobs, even getting the flu could have a notable effect on his company’s value. The fact that he’s actually stepping down for a time indicates that something is, indeed, seriously amiss.

At least one commentator has issued a call to privacy on his behalf. I agree with that. News reports speculating about the future of the company and the value of its stock are inevitable, I suppose, but it would be nice if the media could find some way to discharge their duty to the public without heating up Mr. Jobs’ life with their spotlights. He needs to find a place of peace and privacy where he can concentrate on healing.

I’m grateful that my congregation gave me such a place, during the acute phase of my illness. I used this blog to let them know how things were going, but that was my choice to do so. This online journal has also been a kind of therapy for me, providing a way to reflect personally and theologically on what’s been happening to me, and what God is doing in my life.

Sometimes I wonder, though, whether certain developments in the life of the church may be attributable to my cancer. As we struggle with issues of membership growth and finances, as nearly all mainline Protestant churches are doing these days, I ask myself whether some of this church’s particular challenges are attributable to my health outlook. Has this become “the church whose pastor has cancer,” in some people’s minds? How does my health situation affect long-range planning? Did the intense focus on my health back when I was receiving chemotherapy – as God’s people ministered to their minister – help or hinder the church’s overall mission in the long run?

These are mostly unanswerable questions. As with families, churches sometimes find they can’t choose or plan for certain eventualities. They have to face whatever comes.

Still, the questions remain in my mind. Leadership is personal – and nowhere is this more true than in ministry.

January 15, 2009 - Retirement Planning

Yesterday, Claire and I returned from Princeton Theological Seminary, where we attended a two-and-a-half-day Pre-Retirement Seminar sponsored by the Presbyterian Church’s Board of Pensions. Not that we have plans to retire anytime soon. That, God-willing-and-the-cancer-don’t-flare-up, is 15 years off at least. We went because the Board of Pensions encourages ministers over 50 to attend one of these conferences, and to bring their spouses with them. The idea is to get a head start on long-term financial planning.

The Presbyterian Church has a mighty good pension plan. It’s fully funded, and conservatively run – something we plan members surely appreciate in uncertain times like these. The sticky wicket, for those of us pastors who live in manses, is where we’ll live in retirement. The Board’s encouraging us to start thinking about the answer to that question now.

Claire and I found it a positive experience. The leadership – especially the financial-planning speaker – was excellent. Just what we budget-challenged liberal-arts graduates needed, even if it did feel odd to be thinking about retirement in our prime working years.

There were 20 or so participants, all told. Ages ranged from people in their early 50s, like us, to one man who’s just a few months from the proverbial gold watch.

My active cancer diagnosis sets me apart from my fellow participants. Will I make it to age 66 and 4 months – the threshold when Americans in my birth year can collect full Social Security benefits? Or, will disability be staring me down sometime before then, as a stem-cell transplant or some other treatment looms? If disability is in my future, will I recover fully after treatment and return to full-time ministry? So many unanswerable questions...

The more time I put between myself and the aggressive large B-cell lymphoma I once had, the more retirement planning makes sense. Indolent NHL is kinder, that way. When Dr. Lerner assures me I could still be doing the watch-and-wait thing years from now, I take him at his word - which is why I can even go to a conference like this in the first place.

Questions like these are, of course, imponderable. The only thing to do is to plan for the best-case scenario, and hope I’m prepared for anything worse that may come my way.

The conference program also included a presentation on maintaining personal health. I’ll be the first to admit I’ve got a long way to go in that area. I’m vigilant about anything cancer-related, of course, but anyone who knows me knows the diet-and-exercise thing is a tough sell. The spirit is willing on that one, but the flesh is weak.

So, Claire and I left Princeton with a lot to think about. One of the benefits of this particular meeting was that it encouraged us in ministry – that most other-directed of occupations – to try thinking about ourselves, and taking care of ourselves, for a change.

Point well taken, Board of Pensions. I’ll try to do better.