A Pastor's Cancer Diary

February 13, 2012 – Link to My Past

2012-02-13T19:49:00.002-05:00

I’ve been recovering at home for the past week, following last Monday’s surgery for benign enlargement of the prostate. Everything went well, as predicted, and I’m on track for a full recovery. Tomorrow I’ll venture back over to the church office, and see how things go.

Today, though, I’m thinking about an object that came into my possession recently. A few days before my surgery, I did a Google search for the name of my father’s old business, a high-end men’s clothing store called Wilton & Woolley. It was located on Main Street in my hometown of Toms River, New Jersey. (The “Woolley” name belonged to a silent partner, a haberdasher from another town who had fronted him some money to start the place.) My father, Carlos E. Wilton, Sr., operated the store for a decade or so in the late 1950s and early 1960s, before getting out of the business in the nick of time, just before Toms River’s once-vibrant Main Street was bled dry by a new shopping mall on what was then the outskirts of town. Dad used to tell my brother Jim and me that Wilton & Woolley was our family business, that we all owned it together and that one day maybe we kids would have it for our own.

I can’t imagine being a retail merchant, myself – even if an old-fashioned haberdashery like his could have survived to be a going concern today. Yet, that’s the way my father used to think when we were kids, and who were we to disabuse him of the idea?

I was looking the other day for a photo of the Wilton & Woolley storefront to put on my Facebook timeline, and never did find one. Google led me, instead, to an eBay page, where somebody was selling an old printer’s block with the Wilton & Woolley name on it.

It was a strange feeling to run across that item. It felt vaguely wrong to see it there, like it was a piece of my family heritage on the auction block.

In fact, this hunk of wood and metal had never been owned by anyone in my family. Back before the days of computer graphics, print shops would create metal plates they would insert into a rack beside similar blocks, along with a whole lot of the moveable type that was then their stock in trade. Then, they would slather ink onto the whole assemblage, and run as many copies of the letterhead, handbill or brochure as might be needed. Once the job was finished, printers would save blocks like this one to reuse in the future. In fact, on the bottom of the piece of wood is the name and address of the long-shuttered print shop – evidently one my father patronized for advertising. The store name appears in the jaunty, 1950s typeface he always used, the closest thing Wilton & Woolley ever had to a logo.

I felt like I had to have the thing, without knowing exactly why. I’ve got no place to display it, no real use for it. God knows we’ve already got way too much bric-a-brac in the house. Yet, for 15 bucks I figured I could afford to free it from the auction block, so I did.

It arrived in the mail just after I got home from the hospital. With its wood-block backing, it’s about 5 inches long. It’s hefty, substantial, reassuring to hold. The wood still bears an ancient smear of black ink. To me, it feels like a link to my past.

I’ve got a few small items associated with my father, but not much. Sadly, his life contracted in his later years, as he fell victim to years of substance abuse – alcohol and tobacco, the drugs of choice of his generation – and what was, very likely, undiagnosed clinical depression. After selling the store, he hit the road as a traveling salesman, first selling school library books for major publishers and, later, law books. When he was motivated, Dad won all the sales awards. Yet, inevitably, he’d grow tired of the grind. He would slack off on the sales calls, get into some kind of argument with the bosses and they would part ways. He jumped from one publisher to another in that way, every few years. After he and my mother divorced, he switched to selling life insurance. Abruptly, Dad moved clear across the country to the Central Valley of California, where he’d grown up, intending to start afresh in the life-insurance business out there.

My father ended his working life as a night clerk in a convenience store called the “Git-n-Go” (photo is not of his store). By that stage of his life, he amiably settled for enough money to pay the rent and keep him in booze and cigarettes. It didn’t seem to faze him when the store was robbed, twice, on his shift – once at knifepoint, giving him a little scar on his neck where the knife-tip had broken the skin. He never even told us when these things happened. We learned about them only years later. Not a big one for communication, was my Dad.

After he almost died from a dissecting aortic aneurysm – that led to an air-ambulance helicopter flight to Stanford University Hospital for herculean surgery to give him a new aorta – he moved back east to Newton, Massachusetts, to an apartment down the street from my brother, Jim. Dad had finally quit smoking by then – a month in ICU on a ventilator will do that to you – and there he lived the last year or so of his life, subsisting on two or three six-packs of Budweiser a day, because he figured it was better for him than the Canadian whiskey (and, later, vodka) he’d formerly favored.

Nothing of what my father did in his working life left any sort of legacy. He always had the misfortune to find himself on the downward slope of major economic change, but did manage to bail out in time before the wave crashed. First, the 1960s blue-jeans era reduced the market for “Mad Men” tailored suits and fedora hats. Then, the advent of the shopping mall did away with most Main Street family businesses of any kind. Dad did well in the book business for a few years, but was fortunate to jump ship before the Internet changed that world forever. By then, I suppose he was feeling burned-out as a salesman, but it was all he knew how to do. Life insurance was never a good fit for him.

I’ve only seen Arthur Miller’s “Death of a Salesman” once in my life, but I know I could never bring myself to do so again. That grim drama’s just too close to home.

The printer’s block in my hand feels like a sort of legacy. It’s solid and substantial, concrete evidence of a nearly-forgotten family business my father hoped and dreamed would outlast him. Maybe he imagined that, in time, he would buy Mr. Woolley out, and he’d rename it “Wilton & Sons.”

At age 55, I’ve reached the stage of life where I’m thinking about my own legacy. A couple of cancer experiences have pressed such ruminations upon me a bit earlier than most, and this recent surgery and slow recovery have reminded me once again that, as that spoilsport Isaiah puts it, “all people are grass, their constancy is like the flower of the field.” (Isaiah 40:6)

Myself included, of course. Parish ministry is notorious, even in the best of times, for its abstract, hard-to-categorize results. In this profoundly confused era, we who pastor mainline Protestant churches are all too often reminded that we’re serving a shrinking, aging market. I’ve grown quite tired of reading articles in professional journals that include the familiar Cassandra-words: “If present trends continue...”

What will my children hold in their hands, one day, that reminds them of me, of my years of toil in the vineyard of the Lord? A Bible, a calling card, a tarnished home-communion set, a disintegrating copy of one of the pulpit-helps books I’ve written? As my books go out of print, much of what I’ve created, in the form of writings, lives now on the Internet: sermons once voiced in their time, but which now persist only as ghostly electrical impulses, mere droplets in a vast and ever-expanding sea. As the church continues to lurch through rapid societal change, I wonder: will my grandchildren yet unborn even know what a sermon is – homely, spoken words of testimony, unadorned by electronic finery?

Ultimately, I suppose, my legacy is my children – as my brothers Jim, Dave and I are my father’s legacy. After more than 20 years of ministry in one church, and 6 years before that of guiding others into ministry as a seminary assistant dean and admissions director, there’s also another group of people that are my legacy. Those, of course, are the other lives out there I’ve touched – and, I hope on my best days – influenced for the better. Sure, a great many of the babies I’ve held in my arms at the baptismal font have drifted away from the church in adulthood, but not all. In a time of convalescence such as I’m now going through, the many cards, emails and other caring communications I’ve received remind me that what I do continues to be appreciated.

“O that my words were written down! O that they were inscribed in a book! O that with an iron pen and with lead they were engraved on a rock forever! For I know that my Redeemer lives, and that at the last he will stand upon the earth...” (Job 19:23-25). For any of us, our true legacy is no block of wood with lead type fixed upon it. It’s flesh and blood. As it was for my father, it will one day be true for me. Soli Deo Gloria.

February 8, 2012 – A Visiting Nurse Comes to Call

2012-02-08T17:00:00.000-05:00

My surgery went well, or so the doctor tells me. I was discharged from the hospital after one night, with a catheter, and am now recuperating at home.

This morning I had a call from a visiting nurse. She was here about 45 minutes, all told, and spent all but about 5 minutes of that time taking medical history and filling out legal-consent and billing forms. She took a quick glance at the catheter bag and told me what I can expect in the hours to come. A different nurse will come tomorrow and, if all continues to go well, remove the catheter.

OK, I understand this was an intake visit for a new patient, and the home-nursing agency is now on call 24/7 between now and tomorrow morning in case I should experience any difficulty – but, still, the ratio of time devoted to administration as compared to actual medical treatment seems more than a little skewed.

I thought it was a total waste of time going over my medical history and dictating my medications list to the visiting nurse, when this information could easily have been forwarded by my doctor or the hospital.

As pleasant and – I assume – as competent as the nurse was, the visit was a case study of all that’s wrong with American medicine today. It was a tale of compartmentalized agencies, separated by a wall of bureaucratic HIPAA regulations, failing to communicate essential information with each other.... An experienced R.N., spending just shy of 90% of her time on paperwork that’s more important to the attorneys and the accountants than it is to the patient.... An insurance company, bailing on their responsibility to cover another couple of days in the hospital, sending a medically-unqualified patient home to maintain his own catheter.

Thankfully, I’ve experienced no complications or problems so far. But it could easily have been otherwise.

What is wrong with this picture?

February 4, 2012 – More Surgery, Non-Cancer-Related

2012-02-04T15:11:00.001-05:00

On Monday, I’ll be going into Ocean Medical Center for a long-postponed operation. I could have had this done as long ago as last summer, but the surgery to remove my thyroid was more urgent, so this went onto the back burner.

For quite some time, I’ve been dealing with BPH, or benign prostatic hyperplasia – “benign enlargement of the prostate,” in everyday terms. The word “benign” in that description needs to be emphasized: my PSA tests have all been normal, and there’s no reason to suspect any sort of malignancy.

The surgery I’ll be having is known as TURP, which stands for “transurethral resection of the prostate.” According to my urologist, Dr. Daniel Burzon, it’s “the gold standard” in treating this condition: a long track record of success and a low likelihood of enduring side effects, even if the recovery from the surgery is a bit longer that some of the other alternatives. I’ll spare you the somewhat grisly details of this procedure, Gentle Reader, but if you know how to access this blog, you’re probably very capable of doing a Wikipedia or Google search if you’re so inclined – and if you don’t mind some of the cringeworthy descriptions you’re likely to come across.

I’m supposed to show up at the hospital at 6:00 am on Monday for the surgery, and will stay there at least one night. I’m expected to be out of commission for the next week or so, and the doctor has told me I shouldn’t plan to lead worship on the following Sunday, because he doesn’t want me on my feet that long.

Since this is a cancer blog, I don’t expect to have much more to write about this experience in this space, beyond what I’m saying now. Besides, given the nature of the surgery, I’m less inclined to comment about it publicly in any setting. Because of my cancer history, though – and because of the fact that, to some minds, the words “prostate” and “cancer” seem to go together like peanut butter and jelly – I feel the need to get the information out there that I’m having this done, and that it’s in no way related to any malignancy.

January 8, 2012 – Lessons from the Cancer Wilderness

2012-01-08T19:08:00.003-05:00

Reading the Gospel of Mark in preparation for today’s Baptism of the Lord sermon, I come across a rather jarring transition. It’s not actually in Mark 1:4-11 - today’s recommended passage from the Revised Common Lectionary - but it ought to be. The Lectionary editors took the coward’s way out and chopped the last two verses off Mark’s account of Jesus’ baptism.

They end their scripture reading with the heavenly voice saying of Jesus, “You are my Son, the beloved, with you I am well pleased.”

Now, isn’t that special? A heavenly benediction.

But that’s not where Mark ends his story. Two more verses come along, before he wraps it up:

“And the Spirit immediately drove him out into the wilderness. He was in the wilderness forty days, tempted by Satan; and he was with the wild beasts; and the angels waited on him.” [Mark 1:12-13]

Wow. So much for the warm, fuzzy feelings. So much for God’s benevolent benediction. Let the story spin out to its natural conclusion, and suddenly God doesn’t look like such a kind, benevolent deity. No sooner does God bless Jesus, the son, then God gives him a good kick in the pants (or the robe, as the case may be).

I am not making this up. It’s right there in the original Greek. Well, maybe it doesn’t say “kick,” but Mark says the Spirit “drove him out into the wilderness.” The Greek word means “to throw out, to drive out, to expel.” It’s the same verb Mark uses in chapter 11, verse 15, as he tells how Jesus “entered the temple and began to drive out those who were selling.”

Seems God is a Tough-Love sort of parent.

So, what is this wilderness, into which God is so determined to push Jesus? It is, in the Jewish imagination, the place where the deepest of spiritual encounters happen. Moses’ epiphany by the bush that’s burning, yet is not consumed... The giving of the 10 Commandments on Mount Horeb (or Mount Sinai, depending on which story you read)... Elijah hiding himself in a cleft of the rock, surviving earthquake, wind and fire to hear that “still, small voice” – or that “sound of sheer silence” – that tells him everything’s going to be all right... John the Baptist’s favored abode, where he clothes himself in animal skins and scarfs down locusts and wild honey for breakfast. All these take place in the wilderness.

At its very root, Jewish spirituality – and, therefore, Christian spirituality as well – is a desert spirituality. The Hebrew refugees who walk away from the fleshpots of Egypt, straight through the Red Sea waters, aren’t exactly going on vacation. God opens the way for them through the waters not so they can move to a gated community and take it easy, after all those years of hard labor building pyramids. No, God casts them into a daily struggle for survival, where they’ve got to learn the skills they need to live, or die trying.

With all that background, it’s hardly a surprise that, when God gives Jesus a blessing and sends him on his way, God sends him first into the wilderness. It’s Jesus’ experience of testing, of trial. It’s Messiah boot camp. The angels are there to serve him, but I expect their role is more like Marine Corps drill instructors than pillow-plumping flight attendants.

Cancer’s a wilderness experience. Its diagnosis can bring on disorientation, grief, depression, anger, anxiety, and a whole host of other grim responses.

The poet T.S. Eliot is aware that there are all sorts of deserts in life, not all of them having to do with sandy wastes and scorching sun. In his poem, “Choruses from the Rock,” Eliot has this to say:

You neglect and belittle the desert.
The desert is not remote in southern tropics
The desert is not only around the corner,
The desert is squeezed in the tube-train next to you,
The desert is in the heart of your brother.
[T.S. Eliot, The Complete Poems and Plays, 1909-1950 (1952: Houghton Mifflin Harcourt), p. 98.]

Sometimes the desert is in the cancer survivor’s heart as well.

I find it significant that Jesus’ experience of being “driven out” into the wilderness takes place immediately after his baptism. What appears to us a jarring transition actually makes perfect sense.

Think of what baptism really means. We baptized a baby in church this morning. Cutest little girl you ever did see. The congregation loved the way she looked adoringly and trustingly up at my face as I washed her forehead with water carefully warmed so as to spare her any unnecessary discomfort. But that’s not the essence of baptism. It’s not the heirloom gown passed down in the family for generations, the party afterwards with the sherbet punch and finger-sandwiches and potato salad. No, baptism is made of sterner stuff.

As practiced by the first generation of Christians – before there was a second generation to grow up in the faith – baptism often took place standing waist-deep in a swift-flowing river, and the person performing the baptism pushed you down under the water and held you there, just long enough that you felt short of breath and feared you might drown. Then, just as all seemed lost, you were lifted up into fresh, breathable air, gasping and sputtering, thoroughly relieved you were not going to die at all, that day.

When parents bring infants for baptism, they do it because they wish the very best for their children. The very last thing on their minds is a life filled with pain and suffering. As parents, their natural inclination is to shield and protect their children from anything so harsh and threatening as that.

But, do you know what? Life is filled with pain and suffering. Like cancer. As it says in the book of Job, “human beings are born to trouble just as sparks fly upward” [5:7]. Baptism offers no guarantee whatsoever that the life ahead of this little child, or any other, is going to be more comfortable, or more protected, than the life of an unbaptized baby.

What we in the church offer children, in baptism – and in the years of Christian Education that follow – is not so much a soft, cuddly blanket as a wilderness survival kit. For surely, this human life of ours can seem at times very much like a wilderness sojourn. To get through it intact, we need to be trained in the ways of the woods, and know where to look to find food and shelter.

Henry David Thoreau, who retreated to his famous cabin beside Walden Pond because he “wished to live deliberately, to front only the essential facts of life,” speaks of something he calls “the tonic of wildness.” A tonic, of course – in nineteenth-century parlance – is a medicine, or more like what we’d call today a nutritional supplement:

“We need the tonic of wildness, to wade sometimes in marshes where the bittern and the meadow-hen lurk, and hear the booming of the snipe; to smell the whispering sedge where only the wilder and more solitary fowl builds her nest, and the mink crawls with its belly close to the ground. We can never have enough of nature. We must be refreshed by the sight of inexhaustible vigor, vast and titanic features, the sea-coast with its wrecks, the wilderness with its living and its decaying trees, the thunder cloud, and the rain which lasts weeks and produces freshets. We need to witness our own limits transgressed, and some life pasturing freely where we never wander.” [Walden (Houghton Mifflin, 1854), p. 257.]

The poet Wendell Berry expresses a similar vision of wild places in these lovely lines, in a poem called “The Peace of Wild Things”:

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
[The Selected Poems of Wendell Berry (ReadHowYouWant.com, 2010), p. 36.]

I like to think that, when the Spirit drove Jesus into the wilderness, it was – at least in part – so he could have experiences such as these. Yes, Jesus’ sojourn in the wilderness is traditionally depicted as a time of temptation, a struggle with Satan. Yet, I also think it had to include its moments of peace and stillness, of contemplation and wonder, of living close to the earth and close to God.

I find it comforting, as I reflect on my cancer experience, to recall the therapeutic value of my baptism. As with Jesus’ own trip to the river, it was followed eventually by an experience of being driven into the wilderness. The wilderness is a fearsome place, to be sure. But it can also be a fearsomely beautiful place.

And therein lies today’s lesson.

December 30, 2011 - More on Out-of-Reach Zevalin

2011-12-30T18:40:00.002-05:00

Dr. Vance Esler, oncologist and blogger, posted a comment on my last entry that's worth my cutting and pasting it here:

"Carl, it is an oversimplification to say that oncologists don't refer patients for Bexxar or Zevalin because it isn't in their own personal arsenal. In fact, a fair amount of the treatment is done by the medical oncologists.

Every day medical oncologists take financial risks. We buy and administer expensive drugs, hoping that the insurance carriers will reimburse us enough to cover the costs. We are used to this.

But Bexxar and Zevalin are administered by nuclear medicine physicians, and they are NOT used to taking the financial risks. Furthermore, they don't know how to bill for such drugs, and they are afraid to try.

So no one in our 600,000 person service area offers the treatments. The medical oncologists are not licensed to dispense the drugs, and the people who are licensed are afraid to take the financial risks.

Thus, the medical oncologists are forced to look for alternatives."

Interesting perspective Vance has: that it tends to be the nuclear-medicine doctors who aren't up to speed on administering radio-immunotherapy agents like Bexxar and Zevalin, and are therefore more likely than oncologists to be at the root of the problems these effective medications have had in making their way into the marketplace. Vance knows a lot more about this than me, so I'm happy to say that I stand corrected.

I find it pretty shocking that his 600,000-person service area in Texas doesn't have a single qualified specialist who's stepped up to the plate to offer these treatments to patients who could use them.

Still, to me this points out, once again, the shortcomings of our free-market, entrepreneurial approach to healthcare funding, that puts doctors in the position of having to assume unacceptable financial risks in order to deliver proven, effective treatments to their patients. Those who are determined to keep the government out of healthcare funding are continually spouting the line that, left alone, the invisible hand of the market will eventually even everything out. This is a clear example of just how false such economic dogma is, when applied to cancer treatments.

December 23, 2011– Mademoiselle Zevalin’s Empty Dance Card

2011-12-23T22:46:00.002-05:00

Interesting article, here, about the difficulties ibritumomab tiuxetan (Zevalin) has been having, getting accepted as an effective treatment for non-Hodgkin lymphoma.

So, at the Oncologists’ Ball, why is Zevalin – which is actually a pretty hot little number – treated like such a wallflower? Dr. John Pagel, of the Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance, thinks he understands the reason:

“Unfortunately, oncologists still have to refer the patient to a radiation oncologist or nuclear medicine physician for administration of the drug, which can be a barrier for treatment in some cases.”

Gee, d’ya think?

For most oncologists to prescribe Zevalin for their patients, they have to give up the privilege of dispensing treatment themselves. Since many oncologists – who have invested big bucks in elaborate chemo suites, where they dispense medicines costing tens of thousands of dollars – earn their money not just from the medical wisdom they dole out, but also from the meds, telling a patient “I think Zevalin could help you” means foregoing the income from several months of costly chemo treatments.

Is it any wonder so many oncologists stick to the classic approaches, which just so happen to use the treatment agents they’re licensed to dispense?

Zevalin, along with Bexxar (the other leading drug of this type), is the highly-effective Rituximab bonded with radioactive particles. The CD-20 targeting agent in Rituximab seeks out and travels to the malignant cells – unleashing Rituximab’s own cancer-fighting properties – but then the radiation zaps ‘em again. It’s a potent one-two punch.

Sort of reminds me of the sharks with laser beams that were the weapon Dr. Evil lusted after in the silly Austin Powers movies. Rituximab’s the shark. Radiation’s the laser beam. Get it? (Can you hear the screams of a metaphor being stretched beyond all recognition?)

How do you suppose radioimmunotherapy studies of drugs like Zevalin are received at professional conferences, when very few of the members of the professional association are licensed to dispense the drug? (Doctors who administer radioimmunotherapy have to be double-qualified, both in oncology and in either radiology or nuclear medicine.) These docs-on-holiday hear reports of the science behind these treatments, and they can’t really argue with it, but it can’t fail to enter their minds that, in order to prescribe these drugs, they’ll have to let some other doctor’s practice collect the revenue.

I’m not charging oncologists with running some kind of cartel or cover-up. It's just that I'm enough of a Calvinist to point out that they’re only human, and therefore such a thought can’t fail to enter their minds.

Again, it’s the basic structure of our healthcare system that’s the real root of the problem. Force doctors to function as small-business entrepreneurs who are paid according to treatments dispensed rather than according to clinical outcomes, and a proven drug like Zevalin gets pushed to the back burner.

It would be interesting for someone to study which sorts of oncologists are referring patients for radioimmunotherapy more often – those who own their own practices, or those who work for organizations like the Mayo Clinic, where they’re all on salary.

Are there any investigative journalists reading this, looking for a scoop? Just crunch those numbers. I’ll bet you’ll see a correlation.

December 12, 2011 – Blue Christmas

2011-12-12T23:04:00.005-05:00

It’s been a while since I’ve posted, I know. I had the fall stewardship campaign at the church, then Thanksgiving, then the start of Advent – all the while dealing with the sandwich-generation issues that are my life right now: young-adult kids coming and going, and caring for my mother who lives nearby and has Alzheimer’s. Life has been busy (and, thankfully, healthy)!

Yesterday, for the first time, we offered a Blue Christmas worship service at the church. It’s something I’d hoped to explore in previous years, but it took the enthusiasm of our church’s Associate, Linda, to get it organized.

What a blessing! Attendance was not large (nor did we expect it to be). We’d promoted the service as a focused pastoral-care outreach to a select group of people: those who have experienced recent losses, and who feel a bit left out amidst the traditional pre-Christmas merrymaking. For those who participated, it was a rich and meaningful experience – due, in large part, to Linda, who put together a carefully-crafted order of worship that emphasized the presence of God and the quiet beauty of the Advent season.

Judging from what I know of those who were present, most of the losses were due to bereavement, although we were careful to speak to losses of all kinds, including the loss of jobs and income in this difficult economy.

Cancer, of course, brings its own losses. Even those who are fortunate enough to go into remission have lost the sense they once had of being healthy. We’re reminded of that every time we fill in a medical-history form. Always there is the reality of the cancer, and the thought in the back of our minds that someday it could come back.

Towards the end of the service, everyone was invited to come forward and light an individual votive candle in a blue-glass holder, in memory of their loved one or in recognition of whatever other loss they may have experienced. The people did that by means of a white, hand-held candle they passed from person to person. Each one used it, in turn, to light his or her own candle, then passed it to the next person, and so on.

It struck me, at the time, how powerful was the symbolism of that simple act. Here was a group of people, each of them bearing a heavy burden of grief. The road each one is walking is, by its nature, profoundly alienating. Yet, each one passed the light to a fellow believer, all the same.

We receive ministry from others, yet Christ also calls us to offer it. Even in a season of personal darkness, we can very often still find a little light to offer to another. This is what life in Christian community, at its finest, is all about.

There are some who maintain that one of the surest ways up and out of the pit of depression is to try to do something for others, however difficult it may be to get started on that. I think there’s a lot to what they say.

The night before the Blue Christmas service – knowing how few are the liturgical and musical resources to use in planning such a service — I felt led to write the text of a hymn. It was too late to get it into the bulletin for this year, but maybe we’ll use it next year.

The hymn is set to the hauntingly beautiful tune of The Coventry Carol - a familiar tune to many, but not one we’re used to singing as a congregation. Not many people who enjoy listening to the Coventry Carol on their Christmas CDs are aware of this, but its lovely melody is desperately sad. It’s the keening lament of the women of Bethlehem, after their male babies and toddlers have been slaughtered by the soldiers of King Herod. (According to Matthew 2:16-18, Herod was bent on murdering the young Jesus, whom he perceived as a threat to his rule.) “Lullay, lullay, thou little tiny child” is a lullaby, to be sure, but it’s the last lullaby sung by a grieving mother to the dead child in her arms. Pretty grim stuff, but also very powerful in a raw, emotional way.

(Scroll down for the hymn text...)

Comfort Your People, Lord

A Hymn for Blue Christmas Worship Services
Text by Carlos E. Wilton
Tune: “The Coventry Carol”

O Lord, we bring to you, this day,

Hearts that are raw with pain:

For sorrow has companioned us,

And in our lives does reign.

You promise to make all things new:

Comfort your people, Lord.

Would that we could turn back the clock

And for one precious hour

Reach out, clasp hands, and touch again

Love’s fragile, with’ring flower!

You cherish all times in your hands:

Comfort your people, Lord.

All through our lives we’ve trusted you

To be most fair and kind:

Though, in the dark night of the soul,

Anger enthralls our minds.

For freedom you have set us free:

Comfort your people, Lord.

We have not always trusted that

Fairness has been your way.

Too soon it’s seemed to watch our dreams

Float up and fly away.

For good, all things together work:

Comfort your people, Lord.

My soul, why are you so downcast:

Caught up in grief’s malaise?

We trust the day will soon arrive

When we will sing God’s praise!

Not Yuletide mirth, but Easter joy:

We ask this gift, O Lord.

Copyright © 2011, by Carlos E. Wilton. All rights reserved. Permission is given for congregations to reproduce the text of this hymn in worship bulletins, as long as the copyright information is included.

November 9, 2011 – Second-Guessing Symptoms

2011-11-09T16:30:00.002-05:00

I’ve developed a sore throat today.

That in itself is unexceptional. It’s November, and we’ve had some unseasonably warm days. It’s the sort of weather when sometimes I go out without a jacket and discover it’s a little chillier than I thought, having observed the bright, inviting sunshine through the window.

Prime time for sore throats and other cold symptoms, in other words.

Yet, I can’t help recalling what they told me up at Sloan-Kettering about the dry mouth that’s a common side effect of radioactive-iodine treatments. It can kick in any time from a day or two after the procedure until many weeks later. And it can last up to a year.

The preventative? Suck on sour candy to keep the ol' salivary glands a-pumping.

Sounds like old-timey apothecary’s advice, doesn’t it?

I bought a bag of sour balls and have been following instructions, although the last day or two, I’ve been slacking off. Everything seemed fine, so I figured that was maybe OK to do.

My mouth doesn’t feel especially dry right now, but maybe this is how it begins, I tell myself.

On the other hand, maybe it’s just a plain, garden-variety sore throat.

After you’ve had cancer treatment, they give you long lists of symptoms to look out for. Very often there are so many of these, and they’re of such variety, that they can be easily be confused with other, minor ailments that come and go.

Yet, there’s something about our wayward minds that leads a great many of us to imagine the worst-case scenario.

Is my sore throat the result of suddenly-underactive salivary glands that were singed by the radiation? Or is it just the beginnings of a common cold?

At lunchtime I drove over to the drugstore and invested in a jumbo bag of lemon-mint Ricola throat lozenges. I figure that covers both eventualities.

Pucker up!

November 7, 2011 - Kyrie Eleison

2011-11-07T22:58:00.001-05:00

This morning I rode the train back to New York City, for some follow-up scans at the Nuclear Medicine Department at Memorial Sloan-Kettering. One was a repeat of the same scan I had the day before my radioactive-iodine treatment. The other was a CT scan.

Last Wednesday, the day before the treatment, I swallowed a pill containing a small amount of radioactive material. It was just for diagnostic purposes, the technician informed me, and was small enough that it didn't call for any special safety precautions.

The scanner wasn't the familiar donut-shaped CT scanner. It had the same exceedingly narrow table to lie down on, but instead of the donut there were a couple of square pads, each about the size of an old LP record album. They could be positioned a number of different ways on movable arms.

When I asked, the technician told me it's called a gamma camera (at least in layman's terms). The difference between this scan and a CT scan, he went on, is that a CT scan provides its own radiation, but this gadget simply measures the radiation already present inside me. The contents of the capsule I'd just swallowed, in other words.

OK, so this is one of those bring-your-own-radiation joints.

I had a similar scan again today, with the difference that those square pads are looking for radiation emanating not from last Wednesday's appetizer but from Thursday's 120-millicurie main course. I suppose this gamma scan result, combined with the CT scan, tells the doctors something worth knowing about either the effectiveness of the radioactive-iodine treatment (whether there was indeed any residual thyroid tissue left over after the surgery and whether the radiation successfully zapped it) or about how my body's doing at getting rid of the radioactivity.

The technician who ran the CT scanner told me afterwards that there's going to be some kind of medical pow wow tomorrow, and that I should hear something not long after that.

What I can expect to hear, I have no idea, since my understanding has been that the radioactive-iodine treatment is merely a prophylactic measure following my (presumably) successful surgery. What these scans will actually tell the doctors is beyond me.

Before getting off the New Jersey Transit train, I'd been listening to music on my iPod. I decided I was familiar enough by now with my itinerary through the New York subway that I could act like so many other straphangers and leave the headphones on. It so happened that I was listening to Gregorian Chant by the Benedictine monks of Christ in the Desert Monastery of northern New Mexico. I'd spent a week of my sabbatical with them a half-dozen years ago.

It was a rather odd experience to make my way through the bustling commuter crowd in Penn Station with the otherworldly tones of Gregorian Chant sounding in my ears. Although my noise-dampening headphones muted most of the station noises and P.A. system announcements, the louder ones were still intelligible. Those station noises sounded like they'd been dipped into the monastic chant like a waffle immersed in maple syrup.

I found the chant changing my attitude towards the day, and about my fellow-travelers as they charged about every which way, Manhattan-style, on whatever urgent business had brought them to those subterranean transit-chambers.

Kyrie eleison, sang the monks of Christ in the Desert. Lord have mercy.

Kyrie eleison on me, medical pilgrim that I am.

Kyrie eleison on the Wall-Street type in the pricey tailored suit with the American flag pinned to his lapel.

Kyrie eleison on the woman in a chador, pulling her sleepy-eyed preschooler along by the hand.

Kyrie eleison on the two soldiers leaning against the wall in their desert-camouflage uniforms.

Kyrie eleison on the young woman with the flowing black hair and the hoop earrings, tottering along in suede boots with impossibly high heels.

Kyrie eleison on the homeless man on the bench, and on the transit cop prodding him awake and ordering him to move along.

Standing on the uptown subway platform, looking across the two sets of tracks at my downtown-bound counterparts, I decide to launch some silent kyries at 'em.

Random acts of prayer. It seems somehow subversive.

They have no idea, those people I've picked randomly out of the crowd to target with my kyries. Do they even know someone's just blessed them?

Do I realize the same, when I've been similarly blessed by some other anonymous fellow-believer?

I feel, in those moments, like we're all swimming together in a sea of blessings.

November 3, 2011 - Radioactive Blood

2011-11-03T10:53:00.001-04:00

"Is he strong? Listen bud,
He's got radioactive blood.
Can he swing from a thread?
Take a look overhead.
Hey, there,
There goes the Spiderman."

When my brother, Jim, first read an email from me explaining the details of today's radioactive iodine treatment, he said he hoped I'd tell him if I turned up with any Spiderman powers.

Bill, a minister friend of mine, mused that maybe when I come down from this particular mountain, my face will be shining like Moses'.

Another colleague, also named Bill, wondered if we'd be singing "Shine, Jesus, Shine" in church on Sunday.

That's what family and friends are for, you know: to make fun of you at any opportunity.

There's a lot of radiation humor out there. It's a black humor, of the sort that speaks to our free-floating cultural anxiety about this invisible peril, undetectable by anything except a Geiger counter (which almost none of us happen to own, in any case).

From the precautions the staff here at Memorial Sloan-Kettering took with the four little capsules I swallowed at about 10:30 am today, you'd think I was imbibing Tincture of Black Death or something.

As I write this, I'm ensconced in a special treatment room here at MSKCC, whose walls, I understand, are lined with lead. The room can accommodate as many as four patients in its row of comfy chairs, but my only partner today is a twentysomething woman I'm calling Andrea, a Hodgkin lymphoma survivor who, in a curious coincidence, has a medical history remarkably similar to my own (successful lymphoma treatment just over 5 years ago, and a subsequent thyroid cancer diagnosis that came to light through routine follow-up scans).

After undergoing scans earlier this morning for the purpose of measuring the "uptake" of the slight dose of radioactive material we swallowed yesterday, we each had a briefing from Chris, the pleasant and attentive radiation safety officer I met yesterday.

Olivia, the nurse who, yesterday and the day before, stuck me in the derrière with my Thyrogen injections, has been hovering around, seeing to our creature comforts. She's our flight attendant for this little excursion into Cancerland.

Soon after that, Dr. Dunphy and the resident working under him, Dr. Ashima Lyall, entered the room, reverentially bearing The Dose.

I have to say, never in my life have I experienced such an elaborate ritual surrounding the act of swallowing a few pills. Laid out on the standard hospital-room table before me was a disposable pad and a couple of pairs of latex gloves. Like a pair of priests preparing to handle the sanctified host, Dr. Lyall and I donned our gloves. There was a smidgen of liturgy: she asked me to repeat my name and date of birth and compared the patient number on my paperwork with her own. Then, she opened the soup-can-sized lead canister in front of me and, using a pair of the biggest tweezers I've ever seen, lifted out a small plastic vial with four ordinary-looking white capsules tucked inside it.

She explained that the number of capsules corresponds with my prescribed dose of radiation, 120 millicuries. Olivia and Dr. Dunphy looked on as Dr. Lyall used the giant tweezers to lift out each capsule in turn and place it in a little plastic cup nestled inside a lead-lined holder.

Four capsules, four swallows of water, and the deed was done. Drs. Lyall and Dunphy removed the lead-lined sacramental vessels, directed me to take off my gloves, and had me place them alongside Dr. Lyall's on the disposable pad. Then, the pad was folded up like an altar-cloth and whisked away to wherever they take low-level radioactive waste here at MSKCC.

Then, the team went through the same procedure with Andrea, my partner in treatment, before bidding us adieu.

Precisely two hours after our pill-swallowing ritual, Andrea and I will be released from our lead-lined holy of holies for our respective journeys home.

In my case, Claire will drive me, with me sitting as far as possible away from her, in the back seat on the passenger side. Once we return home, we're supposed to avoid any prolonged physical proximity to each other, within a radius of about 3 feet. Fleeting contacts are OK, they tell us, but no sitting together on the couch or sharing the same bed.

It seems that a monastic asceticism follows the Rite of the Dose.

Within 24 hours, Chris informed us earlier, 80% of the radiation will have made its way out of my body, mostly through the urine. (Drink plenty of fluids, yada yada.)

My instructions are to return to the mountaintop on Monday morning, for a set of follow-up scans.

I don't think my face is shining. But, you never know.

November 2, 2011 - Medi-Commute, Day Two

2011-11-02T07:18:00.001-04:00

Back on the commuter train again, early in the morning. Headed for Manhattan, for my second Thyrogen injection and a bit of low-dose radiation so the docs can check the pipes and see how they're working (in the trade, they call that "measuring your uptake").

No precautions needed for the radiation dose I'll get today. Tomorrow (as I learned in detail yesterday) is a different matter. No close proximity to people for a couple of days, take special care to avoid children and pregnant women, sleep separately from Claire, use a different bathroom if possible, wash laundry and silverware separately. Above all, clean up meticulously in the bathroom, because it's mainly through the urine that the stuff passes out of the body. 80% will be gone in the first 24 hours, and the rest soon thereafter.

All this was conveyed to me by Chris, my friendly "radiation safety officer," who was good enough to stop by and see me a day earlier than usual, to answer some particular questions I had.

I was concerned about two things. The first is Sunday morning. Chris assured me that I should be fine to stand up in front of the congregation and lead worship, hand the Communion bread and cup trays to the servers and shake hands at the door. There's no problem with my being in the vicinity of kids or expectant mothers, either, by then. In any event, he told me, even during that first couple of days I only need to be cautious about being right next to another person for more than a few minutes. As in a crowded subway car, or sleeping next to my Beloved. My Sunday-morning pastoral contacts are fleeting, and it's nearly three days later, besides, so no worries.

My dose, Chris told me - which has probably already been determined by a little medical confab that took place yesterday afternoon, involving Dr. Fish and Dr. Mark Dunphy (my new nuclear medicine specialist), plus a few others - will be between 75 and 150 millicuries. It's based on clinical considerations - numbers from my blood tests and such - not body size.

My second question had to do with a side-effect I'd heard about but hadn't paid much attention to - although, given my line of work, I should have. Chris told me a little more about this, but it was the tall, gangly and cheerful Dr. Dunphy who gave me the lowdown. For up to three months after downing the pill, I could experience the onset of a persistent dry-mouth condition.

As anyone who does public speaking knows well, that could be a problem. There's a low-tech way to reduce the risk of dry-mouth, Dr. Dunphy told me: drink plenty of water right after the treatment, and - beginning 24 hours afterwards and continuing for a couple of days - suck on sour hard candies. This side-effect happens when the salivary glands sustain some collateral damage from the radiation. Because sour candies inhibit salivation, I shouldn't start on them immediately after the treatment - allowing the glands to push as much fluid through them as possible - but after those first 24 hours, they have a beneficial effect.

I've just heard a doctor prescribe candy. Seriously. If I'd heard that when I was a kid, I never would have believed it.

As for other side-effects, some people do experience mild nausea, but they'll give me Zofran, an anti-nausea med, as a precaution, as well as a script for some more to take home with me, should I need it. After enduring six rounds of Adriamycin, the Red Menace, back in 2006, I'm not too concerned about that. How bad could a single little pill be, compared to that devil's brew coursing through my veins?

Some people also get slightly swollen cheeks and/or some nagging pain in the vicinity of the jaw and neck, in the weeks following the treatment. Chipmunk cheeks and a pain in the neck, to use the non-clinical terms. OK, I'll cross those respective bridges if I come to them. Sounds like more of an annoyance than anything.

These are the things on my mind, as I sit amongst my dozing, reading, iPod-listening fellow-commuters. Onward and upward, for us all.

November 1, 2011 - Next Station: Radiation

2011-11-01T06:46:00.001-04:00

I'm writing this on the train, headed into New York for an appointment with the Nuclear Medicine people at Memorial Sloan-Kettering. My first-ever blog posting from a smartphone.

Several weeks ago, I got a call from someone in Dr. Fish's office, who told me a shipment of Thyrogen was expected at long last, so I could finally schedule my radioactive-iodine treatment.

For the past week or so, I've been on the exceedingly weird, no-iodine diet that's expected of those who are about to gulp down the nuke pill. The diet requirements are complicated, but the shorthand version is that it's a no-salt, no-bread, no-dairy, no-seafood, no-egg-yolk, no-canned-foods, no-food-coloring diet. All those things have iodine in them. What I'm allowed to eat is pretty much any fresh fruit or vegetable, plainly-cooked meats, plain pasta, olive or vegetable oil, oatmeal, unsalted peanut butter, matzo, English muffins, real fruit sorbet, coffee and tea (brewed in the pot from loose leaves - because evidently there's iodine in whatever they make teabags from).

It's not so much the salt that's the issue, but the iodine that's added to nearly all salt (Kosher salt, which isn't iodized, is permitted in moderation). I haven't shaken salt onto my food in years, but the problem is the large number of prepared foods that contain salt, whether you ask for it or not.

The diet is bland and uninteresting, but I haven't felt overly hungry on it. The problem is the forethought and planning required. I think I've read more food-ingredient labels in the past week than I've read in the past year (and put most of them back on the grocery-store shelf afterwards, after spying that four-letter word, "salt"). It's virtually impossible to eat out, so that means just about the only food alternative while driving around is something you've brown-bagged with you. Eating out with friends on Sunday at a pancake house, I had a bowl of fruit and a cup of coffee.

The diet continues through Thursday morning, when I swallow the pill. The point is to starve my body of iodine so that, when the radioactive iodine from the pill starts coursing through my bloodstream, any tiny, leftover bits of thyroid tissue will smack their lips, grab their knife and fork, tie a napkin around their neck and belly up to the front of the chow line. Then, it's curtains for them.

The weirdness will continue after I leave the hospital outpatient unit on Thursday. I can eat anything I want, but I'm going to be radioactive. Riding on mass transit is verboten. When Claire drives me home, I've got to sit in the back seat on the right side. They'll give me a get-out-of-jail-free card, so if a Homeland Security Geiger counter picks me up as we're entering the Lincoln Tunnel, I won't be whisked off to an undisclosed location.

After we get home, I'm supposed to stay a few feet away from other people at all times. Claire and I will enter old-time TV-sitcom land, sleeping in separate beds. I'll wash my dishes, silverware and laundry separately. When using the bathroom, double-flushing is the rule.

If we still had a first-grader in the house, the easiest explanation would be to say that I'll have cooties.

As for the dog and the cats, when I asked Dr. Fish about them a few months ago, she said: "You're not going to like this answer, but pets don't live long enough to experience the adverse effects of the radiation."

Oh. There's something to ponder. Especially coming from a Fish: ba-boom (rimshot).

Whether or not I'll be able to shake hands at the church door this Sunday remains to be seen. I certainly won't put anyone at risk, but the folks at MSKCC assured me that, according to the earlier schedule we discussed that had me swallowing the pill on a Wednesday, that would be no problemo. Just in case the shift to Thursday makes a difference, Linda, our church's associate, is scheduled to preach. It is a Communion Sunday, so I'll have to be sure to mention to the medical mavens that I'd be handing out the trays of bread cubes and the little cups of grape juice.

We Presbyterians don't believe in transubstantiation, but it's wise to beware of radiation.

Sitting here on the train, amongst the morning commuters with their iPods and newspapers, I'm aware that I've got a very different reason for going into the city than most of them. My goal today is a Thyrogen injection, who-knows-what further medical tests and to get further briefed on what to expect on Thursday.

Tune in to the next thrilling episode of The Adventures of Nuclear Pastor and the Iodine Pill.

October 6, 2011 – Designer Drug Is a Little Closer

2011-10-06T23:38:00.002-04:00

Back in October, 2007 and again in June, 2009, I reported on the research success of an idiopathic vaccine treatment for indolent NHL called BiovaxID. I’ve been following the progress of this research with particular interest ever since, because I was briefly considered for a clinical trial of it when I was first diagnosed. While that clinical trial proved not to be an option for me (after I was diagnosed with an aggressive from of NHL, besides the indolent form the researchers were targeting), it’s one of the newer treatments that continues to hold promise. By the time my indolent NHL-dragon awakes from slumber and again rears its ugly head, BiovaxID will likely be one of the arrows in the quiver.

A current financial news article reports that BiovaxID is just about ready for prime time. Biovest, the company that holds the patent, has just formally petitioned the FDA for regulatory approval.

The wheels of government bureaucracy grind exceeding slow, but this is progress, all the same.

It’s a little odd to read about it in an internet investors’ newsletter called Market Watch. Articles like this one are meant to help aspiring venture capitalists see what's coming from afar, so they can decide whether shares of Biovest’s stock are an attractive place to park some of their simoleons.

In the world of Big Pharma, though, that’s the way it works. It’s not just altruism that keeps those researchers peering into their microscopes and hovering their eyedroppers over petri dishes. If you can “build a better mousetrap” by curing or pushing back some dread disease, the investment world will beat the proverbial path to your door. That means some big, fat paychecks for the people in the lab coats, and even fatter ones for those risk-taking financiers who advanced them the money to do what they do best.

BiovaxID is the ultimate designer drug, in that it’s custom-manufactured for each patient. Starting with some biopsied tissue, the drug company goes back to the lab and cultures a special version of the drug that will be most effective for that person’s body chemistry.

This feature of the treatment stretches the meaning of the word “drug.” You’ll never be able to amble down to your local pharmacy and pick up a childproof bottle of the stuff. Each person’s formula is one-of-a-kind.

What BiovaxID will eventually cost, I have no idea. It sure won’t be cheap. It is to ordinary drugs as a Saville Row bespoke tailor is to K-Mart.

Whatever it takes to get the researchers as far down the road as they’ve gone on this one, I’m glad they have.

Another reason for hope!

October 3, 2011 – A Digital Cancer Quilt

2011-10-03T18:55:00.003-04:00

Here’s a website worth checking out: the digital cancer quilt at FacingCancerTogether.

I’ve seen similar photo “quilts” whose squares are photos of people with cancer, but this one’s got a cool, easy-to-use interface, allowing different configurations of photos within the square, as well as a place to add some narrative text.

It’s still kind of small, but if we survivors all add a square, it will grow larger pretty fast.

Together, all those squares add up to quite a story of hope!

October 1, 2011 – Drug Shortages: I’m Not Alone

2011-10-01T00:30:00.001-04:00

According to a recent item in The Atlantic, I’m not alone in experiencing the effects of a drug shortage (the Thyrogen shortage, that’s currently shoved my radioactive-iodine treatment onto a siding).

The FDA has documented no fewer than 178 drug shortages so far this year.From the article:“The number of drug shortages has been steadily rising every year since 2006, when 56 shortages were reported. It increased to 90 in 2007, 110 in 2008, 157 in 2009, and finally to 178 in 2010, more than tripling in four years.”

There are lots of reasons for these shortages, evidently, including: “manufacturing problems, drug purity issues, and discontinuations of some older, less profitable drugs by drug companies.”

The FDA’s trying to get Big Pharma to agree to a regulation that would require them to give 6 months’ notice before discontinuing a drug, to allow the FDA time to seek new avenues of supply for patients who need it. The pharmaceutical companies are resisting this, complaining that it’s often because of oppressive FDA regulations that they can’t make a profit on their drugs in the first place.

What insufferable arrogance! Who’s the regulator here, and who’s the regulated?

Still no word from Memorial Sloan-Kettering on when they may get some Thyrogen and be able to schedule my treatment. Late August has become late September, and still no word. Now we’re into October.

Considering the extremely lucrative nature of the drug-manufacturing business, and the critical importance of some of these medications for patient health, you’d think these companies could take the small steps necessary to at least let patients know a shortage is coming.

But that would be too ethical, it seems.

September 28, 2011 – The Morality of Health Insurance

2011-09-28T16:39:00.001-04:00

Alarming statistics this week from the world of health-care financing: a new study by the non-profit Kaiser Family Foundation has revealed that the cost of medical insurance has been rising at its fastest rate in recent memory. According to a New York Times article on the study, “the average annual premium for family coverage through an employer reached $15,073 in 2011, an increase of 9 percent over the previous year.”

In this economy? With so many people unemployed or underemployed?

This rise is, of course, much higher than the inflation rate. That’s nothing new. The cost of health care has been rising faster than inflation for quite some time now. The Times article continues: “Over all, the cost of family coverage has about doubled since 2001, when premiums averaged $7,061, compared with a 34 percent gain in wages over the same period.”

Did you catch that? Over the past decade, the cost of medical insurance has grown twice as high, but the average gain in wages is only 34%. That’s a huge discrepancy. Lots of people have been forced to let their medical insurance go, but those employees who have managed to hang onto it have surely had to make savage cuts in the family budget in order to do so.

Remember, those statistics apply to group-rate insurance provided through employers. Self-employed people, who lack the negotiating clout big corporations have, are in an even worse position.

Now, hold that thought, and recall that incident from the September 12 Republican Presidential candidates’ debate, when the moderator, Wolf Blitzer, posed a case-study question to libertarian Ron Paul. What if a healthy 30-year-old decides he can’t afford health-insurance premiums, falls ill, and goes into a coma? Who’s going to pay for his care?

Paul’s answer was, it’s not the government’s job. That approach he branded “welfarism and socialism.” To the delight – and applause – of his fans, he went on: “That’s what freedom is all about, taking your own risks.”

“But Congressman,” Blitzer probed further, “are you saying that society should just let him die?”

The TV soundtrack records several loud voices in the audience shouting, “Yes!”

Paul may have been energized by the cheers, but he wasn’t so stupid as to echo their sentiment. “No,” he replied. “I practiced medicine before we had Medicaid, in the early 1960s, when I got out of medical school. I practiced at Santa Rosa Hospital in San Antonio, and the churches took care of them. We never turned anybody away from the hospitals.”

More applause.

“And we’ve given up on this whole concept that we might take care of ourselves and assume responsibility for ourselves. Our neighbors, our friends, our churches would do it. This whole idea, that’s the reason the cost is so high. The cost is so high because they dump it on the government, it becomes a bureaucracy.”

Jon Stewart, in his September 26 Daily Show interview with Ron Paul, lauded him as one of the few Presidential candidates not guilty of flip-flopping, who’s been utterly consistent over time. That may be so, but Mr. Paul’s remarks reveal he’s also living in some kind of alternative universe and is utterly out of touch with reality. He expects the churches to pick up the slack for people like the hypothetical uninsured 30-year-old in a coma? The churches? Why, the entire annual budget of the 500-member church I serve would only cover a few months of intensive care for that comatose 30-year-old – and that would only be possible if the church would lay off all its ministers and other staff, cease giving to mission causes, disconnect the utilities and close its doors.

Mr. Paul – himself a medical doctor – is living in an imaginary world, in which medical care is delivered by the beloved family doctor who comes to visit patients in their homes, accurately diagnoses their ailments solely by poking and prodding and without resorting to diagnostic scans, cheerfully treats the poor in exchange for in-kind gifts of agricultural produce and livestock, and somehow manages to remain master of the entire vast library of medical literature.

Surely there’s a lot of waste and fraud in the medical-insurance world – including the insurance companies themselves, who do nothing for patient care but push paper and skim off profits for their shareholders – but there are some good reasons why the cost of insurance has risen so much. It’s because the actual cost of medical care has risen, as well. High-tech scans like the ones I get every few months are wonderful technologies, but they cost lots of money. Hospitals pay millions for those machines, then spend years paying them off. New-generation drugs, like the Rituxan that may have saved my life, do amazing things, but they cost millions to research and produce – and not all of those million-dollar babies make it through the clinical-trial process that declares them safe and effective to use.

We’re living in a different world than the world of Mr. Paul’s childhood, of his homespun stories of working in the local pharmacy as a kid, going off to medical school and hanging out his M.D.’s shingle. Maybe back then, on those rare occasions when kindly old Dr. Feelgood had to refer a patient to the university medical center, the churches of the town could get together and hold bake sales to help pay their neighbor’s bills. But those days are long gone.

A retired friend and former colleague of mine, Gene Straatmeyer, addresses this topic in a recent blog posting. He reminisces about the old days growing up in the upper-Midwest farm country,
about how he went largely without medical treatment as a kid despite suffering from asthma, how both his father and his father-in-law dropped dead from heart attacks at relatively young ages. “I remember,” he continues, “when an appendectomy was major surgery. I remember a cousin whose limbs were gone by his early 30's from diabetes. I remember when 70 was a ripe old age....”

“Right now I feel helpless,” Gene admits, “in the face of what may be coming. So do many others. I certainly hope and pray my grandchildren and great grandchildren aren’t tossed back to the time of my childhood because medical care will not be affordable for them or their children.”

Yet, that’s precisely what Mr. Paul, and many politicians like him, are calling for. When leaders like him admit that some sick people are just going to have to die because they can’t afford medical insurance, and debate audiences gleefully applaud such a callous remark, it raises questions of morality that have so far been left out of the contentious national debate.

We’ve made ourselves such individualists in recent decades, here in America, that we’re losing the last vestiges of the social contract, discarding any idea at all that we have a corporate responsibility to care for one another. That's not "welfarism or socialism." It's simple Americanism, merely the 21st-century incarnation of the community values that Mr. Paul and his ilk pretend to admire, even as they're trampling all over them. The very doctrine of individualism – that seems to have become an article of faith for some people – is elevated to such a height in their minds that it trumps all other questions of morality, including even the explicit teachings of Jesus, the prophets of Israel and other great religious leaders, who declare over and over again that caring for the poor is part of our job as a society.

Mr. Paul’s response is to throw such questions of morality back on the churches, saying in effect, “You think we have a community responsibility to care for the poor here in this land? OK, if you feel that way, then you do it!”

Would that we could. But medical care just isn’t that inexpensive anymore, nor is the community’s financial support of the churches strong enough to make that happen.

Guess that comatose 30-year-old’s ventilator has just gotta be unplugged. Hard luck, fella. You gambled and lost.

If it is unplugged, it will be Mr. Paul and his immoral admirers who will be left holding the cord.

Universal, government-provided health may not be the easiest option before us. Yet, the more I hear of this situation, the more I become convinced that it’s the only moral option.

September 27, 2011 – Survivor Time

2011-09-27T02:10:00.001-04:00

A little op-ed article in our local newspaper was written by an artist, Shari Epstein, who happens to be a breast-cancer survivor. Shari reports how some of the paintings she created during her chemotherapy and subsequent radiation treatments took on a rather dark and ominous tone.

She also observes how her experience as a cancer survivor has changed the way she looks at time:

“I am a survivor because having cancer reminds us just how fragile our lives are. For me, it changed the immediacy of wanting to accomplish my goals. It changed my appreciation of the joys in my life. It left me intolerant of wasting my time. Cancer makes time a new precious commodity. Enjoy it, embrace it and hope you have lots of it.”

I can relate to what Shari says. Since getting cancer, I’ve probably been working harder than ever before, particularly on writing projects. I have more of an awareness, now, that my time on this earth is limited. I also feel some of that same impatience she reports with experiences that seem to be time-wasters.

I’m more concerned than before with leaving my mark on the world, with accomplishing some things that will set me apart from the crowd. Previously, I would have characterized some of those daydreams as hopes or desires. Now, they’re closer to goals.

It’s paradoxical that I’m doing this, because of another learning I’ve had as a result of my cancer experience: that cancer just is, that it falls upon certain lives like the proverbial rain that falls on the just and the unjust. If the R-CHOP had made no dent in my lymphoma, if it had snatched me from this world at age 50, I wouldn’t have blamed myself for that. I might have been angry, or frustrated, or sad. But, I wouldn’t have said it was my fault.

Now, with my lazy, indolent cancer hanging back and not doing much of anything for the past six years, I’m inclined to blame myself for any aspect of my life over which I do have control, but that I haven’t turned to the goal of accomplishing something noteworthy.

Some cancer survivors speak of how their experience with the disease has taught them to stop and smell the flowers. Not me. I’m not much interested in doing that unless I can pick and press some of the flowers and use them to make something worthwhile.

I now know, deep in my gut, that time is fleeting.

I’m on survivor time.

September 20, 2011 – Still Waiting for Thyrogen

2011-09-20T12:00:00.001-04:00

The other day I looked at the calendar and said, “Hey, wasn’t I supposed to hear back from Dr. Fish’s office in New York about scheduling my radioactive iodine treatment?” They’d been waiting on news about the availability of Thyrogen, the medication I need to be given just before the treatment. The estimate at the time was that the drug would be available to them in mid- to late-August.

I sent them an email (that’s something patients can do with Memorial Sloan-Kettering doctors, through a special patient website they’ve got set up – unlike most other doctors’ offices, that are still hopelessly mired in the age of the telephone). This morning I checked back on the site, and here’s the reply:

“At this time Thyrogen is not available for the treatment. We do expect an update soon. As soon as we receive Thyrogen we will contact you regarding scheduling.”

Doesn’t tell me much, but at least it tells me that the worldwide shortage of the drug is continuing.

Patents are supposed to protect the intellectual-property rights of inventors, I know, and in that respect they’re a very good thing. Yet, when the invention in question is a drug, and there’s only one company worldwide that’s licensed to manufacture it, I think the company has a special responsibility to be sure the drug remains available. I wonder, is there any provision in the law for taking a drug patent away from a company that fails in such a massive way, so other companies can step in and make sure the supply continues?

Dr. Fish told me the manufacturing process for Thyrogen takes three months. It’s been more than three months, now, since the shortage began. Makes me wonder what’s going on with these people.

August 11, 2011 - A “Really Huge” Cancer Research Breakthrough

2011-08-11T22:56:00.003-04:00

Anyone with a personal interest in cancer treatment will want to read this Los Angeles Times article, about a very significant research breakthrough by scientists at the University of Pennsylvania.

It seems they’ve found a way to modify a patient’s own T-cells, so that, when injected back into the patient’s bloodstream, they destroy a variety of different types of cancer cells. Each re-engineered T-cell packs a wallop: it can kill over 1,000 cancer cells. In the patients who were treated with this experimental regimen, the T-cells had a life of over 3 months, and the cancer has not recurred a year later.

This is as close as scientists can reasonably expect to get to a “natural” cancer treatment. It’s a way to, essentially, educate a patient’s own immune system to do what it should have been doing with those cancer cells in the first place.

“This is a huge accomplishment - huge,” says the Dean of Harvard Medical School. Considering that Harvard is essentially a competitor of Penn in seeking this sort of research breakthrough, this is high praise.

This is the sort of news that gives hope to those of us living with cancer. This is just early research, of course, and “not ready for prime time” as an off-the-shelf treatment option, but it holds great promise for the future.

Way to go, University of Pennsylvania researchers!

August 7, 2011 – Drug Shortage

2011-08-07T23:16:00.031-04:00

On Friday, I rode the train into Manhattan for a consultation with Dr. Stephanie Fish, my newly-assigned endocrinologist from Memorial Sloan-Kettering.

I found Dr. Fish to be well-informed about my case, and ready with answers to all my questions about my upcoming radioactive-iodine treatment (the routine follow-up to my thyroid surgery recommended by the surgeon, Dr. Boyle).

I did encounter one problem I hadn’t expected. Dr. Fish explained that, as an essential part of my preparation for taking the radioactive-iodine pill, I will be injected with a drug called Thyrogen a few days before. There’s currently a shortage of this drug, due to some manufacturing problems at Genzyme, the company that makes it. It’s simply not available.

Genzyme has been acquired by a larger pharmaceutical company, Sanofi-Aventis. I don’t know if that acquisition has any role in the supply problem. I did learn that there were some quality-control issues with Genzyme’s manufacturing process for Thyrogen, which led the FDA to order a temporary suspension of sales.

This shortage was reported in the New York Times in May, although I missed reading about it.

Genzyme has issued an advisory statement about future availability of the drug.

Dr. Fish explained that Memorial Sloan-Kettering is the single largest user of Thyrogen in the country (and is therefore Genzyme’s best customer), so they expect to be at the head of the line when the medicine is finally handed out. Even so, she doesn’t expect that to be for several weeks at least, and even that is uncertain.

What Thyrogen does, she explained, is to raise the level of TSH, or thyroid stimulating hormone, in the body. For people who still have their thyroids, TSH is what tells the thyroid to ratchet up its production of thyroid hormone. In order for the radioactive iodine to be effective in hunting down and destroying any stray particles of thyroid tissue that may still be present after surgery, the level of TSH must be high.

The old-fashioned way to do this is to have patients simply stop taking their thyroid medication (synthroid or levothyroxine) for a couple of weeks. This makes them feel really lousy, as the body copes with the acute shortage. Thyrogen directly raises the TSH level, without the side effects, so it’s by far the most desirable way to conduct the radioactive-iodine treatment.

This would be well and good, were Thyrogen presently available. But, it’s not. So, patients are faced with an undesirable choice between two options. They can either proceed with the treatment and brave the miserable side-effects, or wait until the drug is available, and risk the consequences of delaying treatment.

In my case, she says, there’s no extreme hurry. The papillary thyroid cancer I have is generally slow-moving, and even though my tall-cell subtype is a bit more aggressive, still there’s nothing to be lost from waiting till sometime in the fall to undergo the treatment.

Even so, this shortage makes me uneasy, and also a bit angry. The pharmaceutical companies are protected by patents, which allow them to make a great deal of money for a period of time after they bring out a new drug. This, they claim, is the only way they can recover their substantial research and development costs. Yet, that also means that, if there's a manufacturing or distribution problem, the patients are out of luck. There's no competitor to fill the gap.

Dr. Fish’s office will call me as soon as they know for sure when they’ll have my Thyrogen injections in stock, so we can get some dates on the calendar.

There’s a lot more to say about the details of the radioactive-iodine treatment, the extensive dietary preparation leading up to it, and the safety procedures that must be followed afterwards, but I’ll save that for a subsequent blog post. The drug-shortage problem must be overcome first.

July 11, 2011 – A No-Brainer

2011-07-11T22:57:00.009-04:00

On Friday I had a routine follow-up appointment with Dr. Lerner. It had already been rescheduled once, because of difficulties in getting my routine CT scan approved by my insurance company’s pre-screening agency, Care Allies, acting as an agent for the Presbyterian Church’s Board of Pensions. Well, the delay in approval turned into an outright denial. When I asked if I should postpone my appointment yet again, Dr. Lerner sent word through his office staff that he still wanted to meet with me, even without the scan results that were to have been the focus of our conversation.

When he came into the examining-room, Dr. Lerner explained that he had just called Care Allies on my behalf, and had spoken with the doctor who had denied his request for the scan. It appears that doctor was baffled by the fact that I would be having scans of my neck, chest, abdomen and groin after a thyroidectomy.

Dr. Lerner explained to his counterpart that the scans are not for my thyroid cancer, but for my lymphoma, which is an ongoing, chronic situation that needs to be carefully monitored.

“Oh,” the insurance company doctor harrumphed, “that wasn’t made clear to me.”

“Well, it was right there on the script I wrote, authorizing the scan, which was sent to you. What could be clearer than that? As far as I’m concerned, approval for this sort of scan ought to be a no-brainer.”

“Well, there are many factors that have to be considered in making this sort of decision...”

“The reason I say it’s a no-brainer is because if you don’t approve it, people could assume that you have no brains.”

I doubt the Care Allies doctor was amused. But he did issue the approval, and I expect to go for the CT scan in a week or so. That will be a couple of months late.

Good old Dr. Lerner. He tells it like it is.

I told him I felt bad that he had to spend so much time on the phone chasing down and disproving this frivolous denial of coverage.

He responded, with a sigh, that it’s just part of his job these days. He strongly suspects that insurance companies routinely disapprove a certain percentage of these requests, for whatever reason they can justify. They do this, knowing full well they’ll eventually grant approval, in most cases, on appeal. Along the way, he continued, some less persistent people may grow weary and give up. That’s what the insurance companies want. It’s not good for those patients’ health, but it saves them money.

I suppose, also, that these doctors on the insurance companies’ payroll have to fill a certain quota of denials, to justify their jobs. My case will probably be counted, somewhere on this doctor’s personnel evaluation, as one of a number of appeals he generated – which, in the eyes of the insurance company’s bookkeepers, shows he’s looking out for the company’s interests.

My insurance company is the Board of Pensions of the Presbyterian Church (U.S.A.) – a non-profit that’s nominally under the oversight of the denomination, but acts quasi-independently, for the benefit of plan members like me. The Board hires Highmark Blue Cross/Blue Shield to manage its medical-benefits program, and Care Allies – a contractor specializing in cost-control – comes in there somehow as the pre-screener of certain costly medical procedures. How involved Highmark is in recommending Care Allies to the Board, I couldn’t say.

I think well of the Board of Pensions. Based on the individuals I know who have served on the Board, I believe their highest priority truly is the welfare of plan members. Yet, when decision-making is outsourced to contractors like Highmark (ostensibly a non-profit, but with a big-business corporate culture) or Care Allies (a for-profit consulting firm), something of that charitable concern is undoubtedly lost.

What happened to me is no different than what happens to countless other people around the country every day. Add this incident to so many others like it, and the amount of wasted time, wasted effort, wasted expertise, wasted money is simply staggering.

Any healthcare system that involves a multitude of private insurance companies - and their contractors - competing for profits will continue to generate scenarios like this. I’m lucky to have a concerned, experienced doctor who’s willing to go to bat on my behalf against corporate greed. Not every patient does.

Universal, single-payer healthcare can’t come soon enough.

July 7, 2011 – Unbending Our Thoughts

2011-07-07T00:18:00.015-04:00

Brian Stabler is a psychologist at the University of North Carolina, Chapel Hill, and a lymphoma survivor. In a helpful 2004 article, he speculates that a good deal of the trouble we go through in dealing with cancer is a result of unrealistic or “bent” thinking. The technical psychological term is “cognitive distortions.”

What are some of these bent thoughts? Stabler explains:

“For instance, when asked, many cancer patients report that they believe cancer is a foreign invader substance, such as a virus. This underlies the common misconception that you can actually ‘catch’ cancer from someone else. Obviously, this distorted belief could work against optimal outcomes, because it encourages the patient to rely on others – as if medicine, and a doctor or nurse is all that is needed to make things better. Not so: the patient is the most important part of the equation, and must learn to deal positively with cancer.”

Stabler encourages a technique of dealing with destructive thinking that requires immediately identifying the presenting thought that caused the negative emotional state, then “sweeping” it so it can do no more harm.

He suggests a learning exercise in which we keep a piece of paper close at hand, divided into three columns. The first is labeled “SITUATION,” the second, “REACTION” and the third, “THOUGHT.” When you find yourself reacting negatively, he explains, make a note of the situation that precipitated it, then try to capture the thought you were thinking just before you became aware of the depressive or anxious or angry emotion that ensued.

Stabler suggests several common categories of distorted thinking:

1. Black and white thinking – this is the all-or-nothing style where everything is simple and concrete, and there are no shades of grey.

2. Catastrophizing – where an individual interprets even the smallest problem as a potential disaster and reacts accordingly.

3. Fortune telling – the tendency to believe that we know what the future holds, and it generally is not pleasant.

4. Emotional reasoning – the belief that the feelings you experience represent reality, as in, "I feel bad all the time, so this must mean that things in my life are pretty bad."

If just one or two of these thinking styles is present, a cancer patient could have a poorer life quality, increased stress, and perhaps even negative changes in the course of [the] illness. Research has shown that if patients learn to journal their thoughts, and actively begin to challenge and adjust their ‘hot thoughts’ and distortions, they can anticipate improvements in their quality of life. I've come to firmly believe that keeping psychologically fit is every bit as important as keeping physically fit.”

Because cancer is generally not caused by some foreign-invader virus or bacterium, but is in fact an erroneous response of our own genes, our patterns of thought may well have a great deal of influence on how successfully we manage to live with this disease. We can’t think ourselves well by utilizing our minds alone, but our thought processes do have something significant to do with our well-being. It’s all part of the healing process. Every little bit helps.

July 1, 2011 - Biopsy Results and Follow-Up Plans

2011-07-01T01:58:00.007-04:00

I’m writing this in Indianapolis. I’m here for a few days for the Presbyterian Church’s “Big Tent Conference,” a national training event.

In the rush to get packed and to the airport, I didn’t have time to report on my Wednesday afternoon follow-up consultation with Dr. Boyle, so I’m doing that now.

The news continues to be quite good. The doctor examined my surgery scar and says it’s healing well. The hardness of the tissue around the scar is normal, says he, and will diminish in time. He says I’ll probably always feel a certain tightness as I move my head up and down, or side-to-side, as do most patients who’ve had this surgery.

Dr. Boyle gave me a copy of the post-surgery biopsy report. It confirms the presence of cancer cells in both lobes of the thyroid, so total surgical removal was definitely the way to go. The report also identifies some cancer cells that were found in the fatty tissue that surrounds the thyroid, which isn’t all that unusual.

As for the pathology itself, my needle-biopsy diagnosis of papillary thyroid cancer was reaffirmed, with the further refinement that I have the “tall cell” variety of papillary cells. This is a somewhat more aggressive form of the papillary cancer.

Because of (1) the tall-cell diagnosis, (2) the concern about the cancer cells just outside the thyroid, (3) my age and (4) my male gender, Dr. Boyle is definitely recommending that I receive a single radioactive iodine treatment within the next 6 months. That treatment used to be nearly universally used as a follow-up for thyroidectomies, but now it’s thought that this procedure was over-prescribed in the past. Only certain patients now receive it, and those factors mentioned above make it essential in my case. Dr. Boyle says there’s no doubt about the advisability of going ahead with that, and who am I to disagree?

So, how concerned should I be about the tall-cell diagnosis? One paper I found online cites a study that found that the 5-year survival rate for tall-cell papillary thyroid cancer patients was 81.9%, as compared to 91.3% for ordinary papillary thyroid cancer patients. Those are still mighty good odds.

On Dr. Boyle’s recommendation, before leaving the Basking Ridge, New Jersey facility of MSKCC, I made an appointment to see Dr. Stephanie Fish, an MSKCC endocrinologist, on Friday, August 5. She’ll be the one who will oversee my radioactive iodine treatment.

As I understand it, that treatment involves some dietary restrictions before and after. As for the treatment itself, I’ll simply have to swallow a pill, which includes the radioactive substance that will make a beeline for any residual thyroid cells that may remain in my body, and zap ‘em. There are no side effects to speak of, although I’ll have to stay away from other people for a few days following the treatment, because of the radioactivity that will persist in my body.

Bottom line? There’s every reason to be confident that the combination of my total thyroidectomy with the radioactive iodine treatment that’s ahead of me will lead to a complete cure. The tall-cell variant is a concern, because it leads to a measurably higher risk, but the overall picture is still quite encouraging.

June 27, 2011 – Hope Will Find You

2011-06-27T21:50:00.012-04:00

Saw a real gem of an entry on Dr. Wendy Harpham’s On Healthy Survivorship blog (June 2). Exploring the subject of hope, Wendy quotes Rabbi Naomi Levy, whose book, Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living, chronicles her journey towards a deeper spirituality after her 5-year-old daughter, Noa, was diagnosed with a rare, fatal and degenerative neurological disease.

In a magazine interview, Rabbi Levy shares an anecdote from the time when Noa was preparing for her bat mitzvah, that rite of passage for girls crossing into the teenage years. With Noa’s learning disabilities, her mother didn’t quite know what she was capable of absorbing, when it came to studying the scriptures.

The Rabbi asked her young daughter what a particular Bible passage meant to her, and she replied, “‘Mom, I think what it means to me is, if you don’t like your life and things are not going well, if you try very hard you can find hope.’ Then she stopped and corrected herself. She said, ‘No…hope will find you.’”

Her mother reflects: “Noa was saying…that hope would find me, that hope was searching for us and that goodness and mercy and all these lessons are actually seeking us, tracking us down, and too often we are running away from them. We’re thinking it’s a struggle, but in reality what we can do is relax a bit and let all these blessings in, because they are all around us.”

Relax a bit.

Relax? Are you serious? When the bad news is coming so fast and furious?

Yes. No one said it would be easy, but there’s simply no other way.

In the medieval spiritual classic, The Imitation of Christ, Thomas à Kempis teaches: “To sum up, dear friend of Mine, unclench your fists, and let everything fly out of your hands. Clean yourself up nicely and stay faithful to your Creator.”

So much of spirituality is about letting go. And the first and greatest thing our desperate fingers are clasping is the illusion that we are in control. For a few seasons of life, most of us can carry off that charade to some degree, but eventually reality catches up. With a bang. Some hard piece of news may first turn our minds in that direction. Perhaps it’s a cancer diagnosis – or, in Rabbi Levy’s case, the unspeakably sad realizaton that she will one day bury her daughter. Even the most fortunate of strivers can’t keep the illusion going indefinitely. Eventually, even those titans who sprint relentlessly into the final lap must one day lean into retirement. Then, soon enough, come the gasping infirmities of age, and finally the awareness that Death will soon come calling.

The drunken Welsh poet Dylan Thomas counseled,

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”

Noble words, these, and not without a certain desperate bravery. Yet, in the end, the brash author of those lines succumbed to pneumonia, after imbibing huge amounts of whiskey on a bender lasting several days. It was by no means his first. Thomas was a tortured soul, who wore himself out in his frenzied pursuit of hope. Rage, however poetic, is hardly conducive to the discovery of inner peace.

We simply don’t have it in us to manufacture the variety or the quantity of hope we need. It can only be gathered in, and then only by those who have ceased to pursue it.

Young Noa Levy was wise beyond her years. Would that we all could be so perceptive.

June 25, 2011 – On the Mend, Post-Surgery

2011-06-25T01:29:00.022-04:00

I haven’t been as on the ball as I could have been, posting updates on my recovery. After returning home late Sunday afternoon, I needed another couple days to rest up, then on Tuesday evening I jumped back in with both feet, for our monthly Session meeting at the church (“Session” is Presbyterian jargon for “local governing board”). It’s been a whirlwind ever since.

Generally speaking, Memorial Sloan-Kettering was just great. Tremendous professionalism there, from every staff member I came in contact with. The one mix-up that could have been avoided was that I got a phone call from Dr. Boyle’s office on the day before my surgery, advising me that I needed to got to Manhattan immediately, for a pre-surgery testing appointment they’d only just made for me. It seems that, with the cancellation of my surgery 3 weeks before, no one had noticed that my pre-surgical testing (which had taken place 2 weeks before that) was now 5 weeks prior to my new surgery date. Since hospital policy declares that pre-surgical testing is to take place within a month of surgery, that meant I had to re-take some of the tests.

All they did was some blood work and an EKG, as well as have me undergo a physical exam by a nurse practitioner. I sure didn’t appreciate having to drop everything and jump on a NJ Transit train and then the subway, but I did make it there in the nick of time – then rushed back just in time to attend our niece, Elizabeth’s, high-school graduation that evening.

I even arrived in the city a little early – and so had 20 minutes to spare, to sit and listen to a lunchtime outdoor jazz concert at St. Peter’s Church, which just happened to be going on just as I walked out of the subway station. One of those quintessential New York experiences.

I suppose the error about the pre-surgical testing is understandable. It’s not every day that an operation is cancelled at the last minute, with the patient already on the gurney. I don’t imagine it happens all that often, either, that the rescheduling of said surgery exceeds the shelf life of the previous testing. It all worked out OK in the end.

A few random recollections on the surgery experience...

For over 5 years I’ve been going in monthly to have my port flushed, preparing for the eventuality when it may actually prove useful. So, when the pre-op prep nurse asked me if I’d prefer that she use my port rather than sticking me in the arm, I said, "Sure." Come to find out, she couldn’t get the needle into my port – and neither could another nurse she called in to try to do it. Both kept shaking their heads and saying my port is the tiniest little old thing they’ve ever seen: a pretty small target to hit with that needle. I guess the nurses in Dr. Lerner’s office, where I go for my port flushes, are more used to that kind of port, because I can only recall one or two times in all the years I’ve been going for port flushes that they haven’t hit it on the first try.

Then, I learned they probably couldn’t have used the port, anyway, because no one’s been able to get a blood return out of it for the past year or so – something that happens to these devices, as the years go by, which partly limits their usefulness. It still works with stuff going in, but there’s evidently some kind of one-way blockage that prevents them from pulling blood out the other way – something they surely need to do in the hospital, for certain blood samples and the like. Makes me wonder why I still go through the trouble of those monthly port flushes – although every time I ask Dr. Lerner about it, he says we may as well leave it in, because if I ever have to receive chemo again, it'll be useful.

I was surprised to learn from the pre-op prep nurse that MSKCC has recently enacted a policy of asking patients if they’d prefer to walk into the operating room, rather than being pushed in on a gurney. Evidently, there’s been some kind of study that’s revealed that certain patients find the surgery experience less stressful if they walk in under their own steam and hop up on the table.

No thanks, said I. My mental preparation for surgery involves going into sort of a zone where I just lie back and let it happen, and I find it easier for that to begin on the gurney, rather than in the operating room. So, I let ‘em push me. Different strokes for different folks.

They actually ended up inserting my IV needle in the operating room, because of all the time lost fussing around with the port. Not the usual plan, and I could tell this was causing a delay in the tight-as-a-drum operating-room schedule. The anesthesiologist herself did it, and she had a little trouble finding a good vein – evidently she’s not as good at it as some of the nurses are. She ended up sticking me in the back of my hand (never my favorite place, because it hurts like blazes) for an initial dose of anesthetic, then her plan was to put in a second needle in the middle of my arm, a place she told me it would really hurt, after I was zonked out. So, I woke up with two needles sticking out of my arm, with the one in my hand in an awkward place where I kept bumping it on things later.

I never did see Dr. Boyle after the surgery. He did come out and talk with Claire, of course, and told her that everything was successful. There was indeed a tumor visible on my thyroid, and he could see no sign of lymph node involvement – a good thing, though not something he’d expected to see, because the CT scan had indicated the lymph nodes looked clean.

The doctor I saw every day in the hospital was Dr Boyle’s fellow, Dr. Arash Mohebati. He’s the one who had initially marked my neck with a Sharpie, pre-surgery. That seemed to me an odd little low-tech safety check, in light of all the pre-operative scans that had been done – I suppose it’s ostensibly to make sure they don’t wheel me into the wrong operating room and take out my appendix instead. Still, the Sharpie routine seems a little ridiculous, since a specialized thyroid surgeon ought to have no trouble figuring out where the thyroid is located – and doesn’t need to rely on his own fellow to show him with an x-marks-the-spot, in any event.

I was really pleased with Dr. Mohebati. Compassionate, knowledgeable, a good communicator, unhurried when I had questions for him – in short, everything a good doctor should be. Even though Dr. Boyle is my official physician, Dr. Mohebati was there before, during and after surgery, and was really the person I dealt with, since Dr. Boyle’s involvement was limited to a time when I was unconscious.

My stay in the post-op holding area was way longer than anyone expected. After the nurse told me I had a place on the 17th floor, in the head-and-neck surgery unit (“our part of the hospital,” as Dr. Mohebati had put it), she came back and said “they took the room away from you.” Never did learn who the mysterious “they” was, nor why the last-minute change. I ended up going, just before 8:00 pm, to another room elsewhere in the hospital. When it became clear I’d need to stay in for the extra day to deal with the calcium problem, Dr. Mohebati came in and told me he’d arranged to have me moved to the 17th floor – which subsequently happened.

The rest of the stay was pretty uneventful. My Sunday-morning blood work showed a normal-enough calcium level, so I was released just after noon. In keeping with MSKCC’s new walk-on-your-own-two-feet policy, I was told I didn’t need to wait for a wheelchair, but could just hoof it out of the hospital on my own. So, that’s what Claire and I did. Felt more like checking out of a hotel room than leaving a hospital.

The ride home was a little uncom- fortable. I hadn’t thought beforehand about the distinctive experience of bumping along Man- hattan’s notoriously potholed-and-patched streets with a stiff neck. Behind the wheel, Claire did the very best she could, but she couldn’t improve on the condition of the streets. It wasn’t until we inched our way through the bumper-to-bumper traffic into the Lincoln Tunnel that things smoothed out.

On Monday, I was mildly alarmed about a tingling in my hands and feet, which I knew to be a symptom of low calcium. I spoke with someone in Dr. Boyle’s office, who relayed an instruction from Dr. Mohebati. He very helpfully suggested I double up on my calcium supplements (which are nothing more than Extra-Strength Tums) as well as my Calicitriol (a vitamin-D supplement that’s supposed to help build up the calcium level). By the next day, the tingling went away, so I guess that was just what I needed.

I’m taking daily Levothyroxine (Synthroid) pills, of course. The 200 mcg dosage is a standard figure, based on my weight. There will be blood work sometime in the next few weeks, in order to more carefully calibrate the dose.

I do feel a little different. A bit tired, with noticeably less appetite than usual (not a bad thing, I say, because getting to a more healthy weight has long been one of my goals). The neck’s been swelling a good bit, and there’s some stiffness under the skin around the incision – both of which, based on my reading, anyway, are normal side-effects. I’m supposed to leave the bandage on until it falls off, or until I see Dr. Boyle for the follow-up consultation this Wednesday, whichever comes first.

So far, so good...

June 19, 2011 - Thyroid Surgery Update

2011-06-19T06:16:00.004-04:00

This is a simple, no frills posting to announce that my total thyroidectomy was successfully completed on Friday, as planned. I'm writing this from Memorial Sloan-Kettering Cancer Center in New York City. The original plan was for me to be home by now, but they've kept me on here because my blood tests have shown my calcium levels to be a little low.

This is surely related to my parathyroids, a series of tiny glands that regulate the body's calcium supply. During a thyroidectomy, the parathyroids are removed from their usual position at the back of the thyroid and reattached elsewhere in the immediate vicinity. Sometimes it takes a little while for them to wake up after being moved, which is evidently what's happened in my case.

I'm very much in recovery mode: still a bit weak, but able to make my way for several laps around the hospital hallway without support. I'm also trying to remember to pick up the little plastic breathing toy they gave me, and inhale through it, in order to restore my full respiratory function, post-anesthesia.

The incision area looks neat and clean, a narrow, 4-inch strip of gauze under a semi-transparent bandage. The whole neck area feels stiff, and I can turn my head only with difficulty.

Claire will be by later today. We left the car in the hospital parking garage, and she's been taking the bus and subway to her sister, Ramona's, apartment in Washington Heights, where she's been staying at night.

The calcium level's been looking better with each blood test, so hopefully I'll get my marching orders today.

June 13, 2011 – To Say or Not To Say

2011-06-13T23:54:00.011-04:00

In an article in the June 10 New York Times, cancer survivor Bruce Feiler shares a list of 6 things never to say to sick people, and 4 remarks that are always welcome. With one glaring exception, I agree with him.

Here’s his list of “Nevers”:

1. WHAT CAN I DO TO HELP?
Nobody likes to answer this question, says Bruce. Rather than relieving sick people, this question puts the burden back on them to come up with something. Just do something, he says, and don’t worry about whether it’s exactly the right thing.

2. MY THOUGHTS AND PRAYERS ARE WITH YOU.
This is the one I disagree with him on, big time. On the contrary, I always find this incredibly comforting and empowering. He calls this a “mindless cliché,” a “hackneyed expression,” a “platitude.” I dunno, maybe I hear this often enough from people who are actually praying that it doesn’t strike me as false.

3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED?
I had a few experiences, too, of people recommending their wacky cures to me. (Can you say, “Quack, quack”?) Worst of all was the guy who stopped by to offer me a “free” $40 bottle of açai juice, then made sure to tell me he and his wife were in this pyramid marketing scheme, and I could use my role of influence as a pastor to help a lot of other people by getting this healthy product to them, and... need I say more?

4. EVERYTHING WILL BE O.K.
I’m glad you feel that way, but only hearing this from my doctor is going to make me feel any better.

5. HOW ARE WE TODAY?
Thankfully, this is one I never did hear from anyone – though I wouldn’t be too happy about it if I did. When you walk around with "Rev." in front of your name, I suppose people are less likely to talk down to you.

6. YOU LOOK GREAT.
Yeah, heard this a few times. Didn’t believe it for a minute, under the circumstances. Actually, I do say this from time to time when I’m visiting people in the hospital – but only when it’s really true. I figure if it’s true, it’s worth saying. If it looks to me like someone’s making a robust recovery from surgery or whatever, I figure it’s encouraging to pass the observation along. Maybe I’m wrong about that. And yes, I realize my CPE (Clinical Pastoral Education) supervisor, back in seminary days, would never go along with it. (“Don’t try so hard to be comforting. It’s not your job to make the patient feel better. Focus on the person’s feelings and reflect them back.”) Yeah, right. I do that a lot. I did learn something in CPE. Yet, if there’s one thing I’ve learned from the actual practice of ministry, it’s that there’s no formula that works 100% of the time. Sometimes you gotta go with your gut. And truth-telling is always a good thing, when it can be done in a way that’s empowering.

So much for the Don’ts. Now, here’s Bruce’s list of Dos:

1. DON’T WRITE ME BACK.
This is a good one. It says to the person, “I want to let you know I’m thinking about you, but I don’t want you to feel under any social obligation to respond. Save your energy for getting better!"

2. I SHOULD BE GOING NOW.
Don’t overstay your welcome. Always good advice. Being there’s the most important thing, but being there doesn’t mean hanging around indefinitely.

3. WOULD YOU LIKE SOME GOSSIP?
By this, he means “Change the subject. Talk about something else besides blood tests and IVs and prescriptions for a change." Yes!

4. I LOVE YOU.
“It doesn’t need to be ornamented. It just needs to be real.” This is the best one of all, for sure.

June 5, 2011 – An AIDS Survivor’s Testimony

2011-06-05T23:40:00.011-04:00

There’s a thought-provoking op-ed essay in today’s New York Times, written by a man who’s been living with AIDS since the early days of that epidemic (Mark Trautwein, “The Death Sentence That Defined My Life”). While there are many dissimilarities between HIV-AIDS survivors and cancer survivors – most notably the horrible stigma and irrational fears that still lurk around HIV-AIDS, and which were especially intense in the early days – there are also some notable similarities.

At one point, Mark Trautwein and his partner, both infected with AIDS, actually packed up and moved to a new home closer to Mark’s family, because they were convinced both were not long for this world and they would need someone to care for them in their last days. Then, the protease inhibitor class of AIDS drugs came out, and everything changed. Suddenly, their looming deaths were pushed back from “soon” to “sometime.”

With the medications that are now available, AIDS – while still a dread disease – has become transformed from a sentence of certain death to something more akin to the “incurable but treatable” NHL that I have.

I’d be very cautious, myself, in drawing any parallels between my story and that of someone struggling to stay healthy with AIDS – especially someone like Mark, who lived through those dark years when no one even knew what this new “plague” was, nor what could be done about it, short of quarantining everyone who had it – but I did have to nod with recognition at what he says he’s learned from looking death in the eye:

“For 15 years, death had been ever present. I'd thought about it daily, got familiar with it and planned around it. It had amazed me that people could walk around every day as if they were immune to it. Now I had to adjust to a life I'd been schooled to believe I'd never have. It was one of the hardest and most welcome things I've ever had to do.”

Even though, at the time of my diagnosis, my objective chances of survival with NHL were far, far better than those of the early AIDS patients, I still went through a major phase of asking all sorts of “what if” questions about my own death – some of them weighty and philosophical, others trivial and even silly. What if this is my last year on earth? What does it mean to “get your affairs in order”? How does one know when it’s time to do that? Is it worthwhile springing for that new crown the dentist says I need?

At mid-life, I’d scarcely begun to absorb the fact that I’m going to die someday – not so much an intellectual realization as an existentially, gut-level one. Suddenly, the thought was with me constantly. I felt like I’d been sleepwalking for years – and, like Mark, I looked around at all the healthy people and wondered how they could be so oblivious to it all. “Why waste your time watching reality shows, people?” I wanted to shout. “Don’t you know your own reality is precious, and of limited duration?” (Thankfully, I kept my mouth shut. I could have been a real downer at dinner parties.)

Aware of my own “incurable but treatable” NHL diagnosis, I was curious to read of Mark’s perspective after 30 years of living with his own:

“My relationship with AIDS is one of my most enduring ones, and has both enriched and beggared my life. It robbed me of friends and loved ones, and with them memories we would have had and repositories of my own history. It ended a career I loved. It cost me a marriage. My intimacy with health care in America has been costly and exhausting. I know these are small prices to pay for life.

What I've gained is precious. Above all, the constant companionship of plague has taught me that life is about living, not cheating death. Fighting disease is required and struggling with life inevitable. But I accept the outcomes now, whatever they are. My disease does not make me special, nor does my survival make me courageous.

On that day I walked from the hospital knowing I had "it," I was given a great gift: the realization that we all dangle from that most delicate of threads and that the only way to live a life is to love it.

I haven't died on schedule, and I've been learning not to live life on one either.”

I don’t swallow 25 pills a day for my immune-system disorder, as Mark does for his. Nor do I have to worry about lingering social stigma. My daily road is still far easier than his. After more than 5 years of watch-and-wait monitoring – and even a recent PET scan that showed no potential lymphoma “hot spots” at all, though it’s surely still there – I’m even beginning to wonder if I’m losing the keenly introspective, philosophical edge I had back in my chemo days. Back then I felt lousy, physically, but in terms of spiritual discernment I felt like I was near the top of my game.

I hope I still love this God-given life as much as I did then. Yet, I’m also realizing how easy it could be to fall back into the poppyfields and go back to my blissful, pre-cancer slumber.

Cancer’s lessons are hard-earned. I hope I don’t lose them.

June 3, 2011– A Virus with No Name

2011-06-03T22:48:00.001-04:00

I still don’t know what malady I came down with, that led to the postponement of my thyroid surgery. One thing I did discover, though: if you’re going to get sick, don’t do it on a holiday weekend.

I started feeling headachey Wednesday, the surgery was postponed on Friday, but it wasn’t until Tuesday that I was finally able to see Dr. Cheli, our family doctor, to begin trying to figure out what ailment I had. He ordered blood work, so it wasn’t until Thursday (yesterday) that enough test results had come back to allow the good doctor to conclude.... Wait for it now.... “We have no idea.”

He called me again today, and left a voicemail. Some more detailed test results had come back. The verdict.... “We still have no idea.”

He’d warned me it could be that way. Seems there are a lot of viruses that slink in and out before medical science can figure out what they are. Guess I had one of those shy ones.

That doesn’t mean it didn’t pack a punch. It was only this morning that I finally began feeling like myself again.

The thyroidectomy is rescheduled for Friday, June 17. Now I’m playing catch-up, because for most of the past week I didn’t have energy for doing very much (and even if I had, I wouldn’t have wanted to put anyone else at risk of getting that pesky bug).

Somebody said the best way to make God laugh is to tell God your plans. I think I can still hear the Almighty snickering.

May 29, 2011– Back to the Unknown

2011-05-29T21:14:00.005-04:00

Best video I’ve seen on general cancer survivorship issues. Link courtesy of Dr. Wendy Harpham, who provided it on her survivorship blog a few weeks ago. It’s a little long – 17 minutes - but worth it:

From Cancer Patient to Cancer Survivor: Lost in Transition from The National Academies on Vimeo.

One of the survivors interviewed describes her experience as going "back to the unknown.” During treatment, in a certain sense you know what you’re up against. Afterwards, you try to reclaim the life you had before, but you find it’s no longer yours. For better or for worse, cancer has transformed it. The life you take up again has been permanently altered by the cancer experience, and there’s a certain amount of grief for what had been hoped for, but will never be. There’s also fear of what could happen, down the road, by way of recurrence.

It’s not all negative, of course. As the video points out, lots of people who go through the cancer treatment ordeal find themselves stronger as a result. That’s certainly been true for me.

I’d love to hear from some survivors, in the comments area, about what you think of the video.

May 28, 2011 – Another 11th-Hour Cancellation

2011-05-28T17:34:00.010-04:00

After a rickety wooden footbridge toppled Catherine of Siena into a muddy stream, she is said to have offered up this exasperated prayer, in the hearing of her sisters: “Lord, I know you promise never to give us more than we can handle, but sometimes I wish you didn’t trust me so much.”

I'm beginning to wonder if the Almighty trusts me especially well when it comes to handling last-minute surgical cancellations. It's happened to me twice so far.

The first time was when Dr. Aron Gornish was getting ready to do an excisional biopsy of a swollen lymph node at the base of my neck. I got all the way to the Operating Room that time, when he discovered he could no longer palpate the lymph node (feel it with his fingers), so he decided the better part of valor was to send me home and schedule an ultrasound-guided needle biopsy with an interventional radiology specialist.

I didn’t make it quite that far at Memorial Sloan-Kettering. Just as far as the pre-operative suite. One of Dr. Boyle’s associates had already marked my neck with a felt-tip pen. The nurse was getting ready to insert my IV line, when she noticed a blotchy red rash on my arm.

“Do you have this elsewhere?” she asked.

“Yes,” it’s all over my body. “Claire noticed it this morning.”

“Does it itch?”

“No, I wouldn’t have known it was there till she told me.”

They already knew about the low-grade fever and the general feeling of malaise I’d been having since Wednesday afternoon. After some back-and-forth on the telephone Thursday afternoon, they’d advised me that the fever wasn’t high enough to be of concern. I was supposed to call them immediately, though, if my fever got higher.

It didn’t. But, in 20/20 hindsight, I wish I’d called them back before we’d left for New York, to tell them about the newly-emerged rash. Maybe it would have saved us the better part of a day in the car.

It was interesting to watch how rapidly this safety concern shot up to the top of the pre-surgical pecking order at MSKCC. Within the space of 15 or 20 minutes, two or three nurses had stopped by to examine my rash, then the anesthesiologist, then Dr. Boyle’s associate, then finally the big man himself. I don’t think it’s usual for the principal surgeon to see patients on the day of surgery until they actually enter the Operating Room. When the associate said he was going to get Dr. Boyle, I figured this was serious.

His lighthearted greeting to me was, “Hello, Red Man.” I had to agree it was an accurate description. As soon as I heard that, I figured the decision to cancel had already been made – although Dr. Boyle took me very kindly and gently through the decision-tree he typically worked through to make such a call. After he’d explained all the pros and cons, he’d actually gotten me to ask him to postpone!

This guy’s bedside manner is awesome.

So, after a restorative stop by the basement cafeteria (I hadn’t eaten or drunk anything since midnight, although a side-effect of my mysterious ailment is not having much appetite), Claire nosed the hood of her car into the mean streets, and we began heading home to the Jersey Shore – close to Rush Hour on Memorial Day Weekend.

It took us over 3 hours – even after judicious use of some back roads that, if New Yorkers ever heard any of us locals breathe a hint of their existence, we’d have to kill them.

While sitting in the traffic gridlock, I called both Dr. Cheli's (family practice) and Dr. Lerner’s offices (oncology/hematology), to tell them what was going on and see if they suggested any urgent action. Dr. Cheli’s office was already closed for the long weekend, and the outgoing voicemail greeting spoke of someone calling me back “tomorrrow,” if I left a message. I was quite sure that meant Tuesday. It also gave me an “emergency” number I could call for more immediate attention. I left a non-emergency message, asking for a callback about an appointment as soon as the office is open.

After that, I called Dr. Lerner’s office – which I knew would still be open on a Friday afternoon, even on a holiday weekend. They put me through to the nurses’ voicemail, and I got a call back from Janet, who’s done a lot of my monthly port flushes. She explained that Dr. Lerner had asked her to call me back and tell me it sounded to him like a classic allergic reaction to something, that it was probably unrelated to my lymphoma, and that I should just wait it out.

After thinking about it and discussing it with Claire, I decided not to call Dr. Cheli’s emergency number, and also not to go to the local emergency room. Diagnosing this mysterious ailment – if, indeed, we’ll ever know what it is – is probably going to require a lot of blood work and similar sleuthing. Not something that’s likely to happen on a holiday weekend. Until the problem is identified (viral, bacterial or allergy), nobody who isn’t already thoroughly familiar with my medical history would likely prescribe me any medicine anyway.

So, it’s watch and wait and feel lousy, here at the homefront. I already told Linda, our associate, that I don’t intend to change my former plan to sit the worship services out tomorrow. I’d be not much good to anyone, and besides, I could be contagious.

We’ll reassess on Tuesday, Lord willing and the creek don’t rise.

May 26, 2011 – The Last Drink

2011-05-26T23:52:00.010-04:00

Here I am, staying up till midnight, guzzling water. It’s the last liquid I’m allowed to have until after my thyroid surgery tomorrow, which is scheduled for 2:45 pm.

I wish they’d give me a later time for that last drink, when surgery is scheduled for later in the day, as mine is. I’d be willing to set the alarm and get up in the wee hours, if that would mean I’d spend less time tomorrow feeling like I’m crossing the Sahara.

Today some uncertainty arose about whether or not I’ll even have the surgery tomorrow. The reason is that I’m running a low-grade fever. I don’t know what bug I’ve got or where I got it, but I’ve been having intermittent headaches, joint stiffness and feeling general malaise for a couple days now.

After taking Tylenol, I’m only a degree over normal, so the resident from Memorial Sloan-Kettering I spoke with today said we should proceed. He said to keep taking the Tylenol if I still have a slight fever, and call them if it gets any higher.

I sure don’t want to postpone this. Too much mental preparation has gone into it – not to mention clearing my calendar. If the fever proves to be an obstacle, though, so be it. It's up to the docs to make that call.

Not that I’m looking forward to a surgeon cutting my throat, of course. But I know it has to be done. I also know the odds of a successful surgical cure are about as high as they get - close to 100% - so that makes it a lot easier to contemplate.

The later time also means Claire and I will have the distinct pleasure (I’m being sarcastic, of course) of driving across Manhattan in the late morning. The original estimate was for a very early operation, which would have meant – with us having to be there two hours early – that we would have been crossing Midtown around 3 or 4 a.m. New York may be “the city that never sleeps,” but at that hour it would mostly be the Yellow Cabs and the occasional delivery truck we'd have to contend with. Oh, well.

The surgery should last about an hour. Then, it’s an overnight stay in Memorial Hospital, with a return home by car sometime on Saturday. After that, the prediction is for a day or two of recovery, then a return to normal activities.

More details about the surgery may be found here, in my March 28 blog post.

May 10, 2011– Parenting With Cancer

2011-05-10T23:31:00.008-04:00

Here’s a new blog that’s worth checking in on from time to time. Parenting With Cancer is the brainchild of a New Jersey NHL survivor, Jen Singer. Her two sons are now in junior high. At the time she was undergoing chemotherapy and losing her hair, they were in elementary school.

A cancer diagnosis is devastating at any age, but for parents of young kids it’s especially hard. What do you tell them? How much will they understand? How to cut back on day-to-day responsibilities and concentrate on healing, when there are young lives depending on you 24/7 for care and nurture?

Our son Ben was in college and our daughter Ania was in high school when I was diagnosed. It was tough enough figuring out how to break the news to them, at that comparatively older age. I can only imagine what it must have been like for Jen, and others in similar circumstances, to tell their much-younger children they’d soon be seeing their mother without any hair.

Kids may not comprehend all the medical details, but at every age they do tend to pick up on the general emotional tenor of the household. I wouldn’t advise parents in Jen’s situation to try to hide the news from their young children. Better to tell them a little, in as non-anxious a way as you can, then wait for them to tell you if they want to know more. Now, here’s the tricky part. Young kids may not be equipped to ask you, in so many words, to tell them more, but even if they aren’t, kids will generally send non-verbal messages that they’re either satisfied or unsatisfied with the briefing you’ve just given them.

I also think it’s OK to get emotional in front of them, if that’s what it takes to be honest and real. You can’t use a young child as your therapist, of course, but for them to see mommy or daddy cry or express anger – and thereby learn that the sky doesn’t fall when that happens – is not a bad thing. Just remember, strength comes in many different packages. Clint Eastwood’s patented squinty-eyed, stone-faced, curled-lip impassivity is only one way of showing it (and probably not the best, in such circumstances). Just think of what a learning it could be for kids to watch their parents wrestle with how to adapt to a really tough piece of news, and come out at the other end of the struggle with an accommodation to the new normal.

Jen talks of listening to a priest’s homily about how wonderful heaven is, a message that she, as a parent and cancer survivor, was not ready to hear. In light of the glories of heaven, the priest was saying, how do we account for human fears of death, except as a stubborn fear of the unknown? Jen’s response:

“Not me. I have a fear of the known. And here’s what I know: If I die and go to Heaven today, I will not be here to raise my children — something I came awfully close to four years ago when doctors found a tumor the size of a softball in my chest.

I wanted to interrupt the priest’s homily, to tell him and the entire congregation that while Heaven sure sounds lovely, I have responsibilities here on earth — two of them — and they aren’t done being raised.”

She also admits to feeling a bit of survivor’s guilt, as she attends the funeral of a neighbor (another young mother), who died of ovarian cancer:

“As I snaked my way through the crowd, hugging person after person that I recognized from town, I realized, This could have been my funeral. And suddenly, I stopped walking. I stopped hugging people. I stopped looking at photos of my neighbor on vacation, on Christmas, at the school where our sons were in kindergarten together.

I stopped and thought about my own kids four years ago, when I was just two months from what could have been my own funeral.

And yet my neighbor is gone and I'm here.”

A cookie-cutter approach to coping with cancer is impossible. We’re all of us different, in one way or another, so we’ve got to chart our own path.

Still, Jen Singer describes herself as a “cancer sherpa.” Like those legendary Himalayan guides, she’s offering her mountain-climbing savvy to others setting out on the journey for a first time. For cancer survivors with young kids, her blog is well worth bookmarking.

May 4, 2011 - Tests, Tests, Tests

2011-05-05T00:23:00.018-04:00

On Monday I hopped a New Jersey Transit train for New York City. The destination was Memorial Sloan-Kettering Cancer Center’s midtown outpatient facility, the Rockefeller Outpatient Pavilion. The purpose? Pre-surgical testing, in advance of my thyroidectomy coming up on Friday, May 27, at MSKCC’s Memorial Hospital on the main campus.

My appointment was for 11:15 with Dr. Anna Rita Marcelli, an internal medicine specialist who does pre-surgical screenings. Dr. Jay Boyle will be doing my surgery, but evidently the protocol at MSKCC is for the big surgeons to farm out the prep work to other physicians. These doctors are specialists their own right. Their task is to ferret out any pre-existing conditions that could potentially cause trouble in the operating room. It’s one of the benefits of going to a comprehensive cancer center.

I suppose that means that, if Dr. Boyle is the executive chef, then Dr. Marcelli is the sous-chef. This is not to detract in any way from Dr. Marcelli's abilities; in the world of haute cuisine, a sous-chef is a well-respected role. In fact, in her spare time Dr. Marcelli is a Professor at New York's Weill Cornell Medical College.

I quickly discovered she’s really, really good at what she does – mainly because she uncovered a potential problem in my case that led to a whole lot of additional tests. It also extended my stay in the city from what I’d guessed would be a couple of hours till about 6:30 p.m.

The first thing they did was send me for an electrocardiogram (EKG). Then, I went into a little examining room where a nurse checked my vitals prior to Dr. Marcelli’s examination. As she was taking my blood pressure (which was a little high, but on a subsequent test turned out fine), the nurse inserted my finger into the pulse oximeter, the little clamp with a glowing red LED that always makes me feel like E.T. The pulse oximeter measures the percentage of hemoglobin in the blood that’s saturated with oxygen.

In my case it read 90%, which is borderline for the condition known as hypoxia (abnormally low oxygen level). A normal reading is considered to be 97% or 98%.

I do have obstructive sleep apnea, and use a bipap machine to augment my breathing every night. The negative airflow of the bipap keeps my soft palate from sinking down and blocking my airway, which means I sleep much better with it than without it. One of the side effects of sleep apnea can be hypoxia, so I do want to be sure to talk about it with Dr. Gustavo De La Luz, my pulmonologist, when I get a chance.

As Dr. Marcelli came in, she gave me a thorough physical, but kept coming back to that less-than-stellar oximeter reading. After repeating the test a couple of times, she told me she wanted me to undergo some further tests, right then and there.

Earlier I had told her I’d had a problem last fall with a blood clot in my lower leg, for which I’d had a few visits with Dr. Franklin Frasco, a local vascular specialist. He’d determined that the clot was in a minor artery, and was therefore not in a position to break off and cause an embolism (arterial blockage) in one of the lungs. He told me to lose weight and get more exercise, and also to start wearing compression stockings (all of which I’ve been doing, although more sporadically than I should have). He released me from his care, saying I didn’t need to see him anymore.

Dr. Marcelli told me that, with the combination of my blood-clot history and the borderline oximeter reading, she wanted to rule out an embolism prior to my undergoing anesthesia on the 27th. Now, here’s where the power of a major cancer center like MSKCC comes to bear. Even though the Rockefeller Pavilion is an outpatient facility and not the main hospital, it’s state-of-the-art. They have the capacity, even at that location, to deliver just about any standard diagnostic test you could imagine, on very short notice. Between noon or thereabouts, and the time I finally walked out of the building about 6:30, I’d had an echocardiogram, a CT scan of the chest, an arterial blood test and a series of pulmonary function tests.

All of them I’d had before, except the echocardiogram and the arterial blood test. Still, most all my local experiences of such tests have involved several days of waiting. At MSKCC, once the doctor ordered it, the tests were stacked up one after the other in no time, and I swiftly went from each one to the next.

Dr. Marcelli had told me that, if there were any sign of an embolism, she would recommend that I confer immediately with another doctor, to determine “what to do next.” I took that to mean immediate hospitalization, and probably treatment with blood-thinners. At the end of the day (literally), no one suggested anything so drastic. Several subsequent pulse oximeter readings were at 96%, a considerable improvement from earlier in the day, and evidently no one saw anything worrisome in the CT scan or echocardiogram results, so I was cleared to go home.

I closed the place, being the last patient to leave the busy pre-surgical testing area.

I’d kind of expected to hear back from Dr. Marcelli in a day or two, summarizing her findings, but I haven’t as yet. So, tomorrow I think I’ll give her office a call and see if she turned up anything I need to know about.

My assumption, though, is “no news is good news,” so I’m not worried.

April 30, 2011 – Living Hope

2011-04-30T16:18:00.015-04:00

Came across this little gem of an article today, in the online edition of Coping With Cancer magazine. It’s by Anne Lawton, an oncology nurse, and it’s about hope.

Hope, she's come to realize, is “the only word that matters” in her business.

Anne’s learned that, from the patients’ standpoint, the nature of hope changes over time. At first:

“People hope their doctor is good. They hope they make it through surgery, and they hope their cancer is treatable. They hope they can tolerate the chemotherapy.”

Later on in the cancer journey, many find themselves hoping for different things:

“They hope for a cure. They hope for a nice, full head of hair, eyelashes, and eyebrows. They hope the neuropathy and the other side effects go away. It's no longer just survival they hope for; they want their life back. They have a lot to do, and they hope the cancer never comes back.”

And if it should happen that the cancer does come back? Hope changes yet again:

“They hope for a life worth living, with few cancer-related side effects. They hope to live long enough for graduations, grandchildren, weddings, or that trip of a lifetime. They hope to complete their "bucket list.”

Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.

Viewing hope as a continuum, can we really say it’s the same hope at the end of such a journey as at the beginning? I’d say yes, it is – although the hope has changed and matured. It’s grown, just as the patient has grown all through this troubling, painful, emotionally-taxing – and, yes, sometimes even spiritually-uplifting – journey.

1 Peter 1:3 celebrates how God “has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead.” Living hope. I think that ol’ apostle was onto something.

By God’s generous grace, hope is alive. It grows and changes as we grow and change. Hallelujah!

April 27, 2011 – This Is the Life

2011-04-27T11:14:00.023-04:00

This Easter, I preached on the topic, “This Is the Life.” While, for many, it’s a phrase that conjures visions of shady cabanas on tropical beaches, shrimp cocktail and umbrella drinks close at hand, I was thinking about something different.

And no, I wasn’t thinking about what this guy means by the phrase, either:

“This is the life” is Jesus’ promise to his disciples in John 10:10, as he proclaims, “I came that they may have life, and have it abundantly.” It’s a promise they wouldn’t begin to understand until after the resurrection.

This whole matter of abundant life takes on a different cast when that life includes cancer. What does it mean to “have life abundantly” when that life, for a cancer survivor, includes a low-level sense of foreboding that’s always lurking somewhere?

I think Matthew’s account of the resurrection supplies an answer. It employs a curious turn of phrase, describing Mary Magdalene and “the other Mary” (probably Jesus’ mother), as they rush from the tomb, having heard the angel tell them Jesus has been raised from the dead. Matthew says, “they left the tomb quickly with fear and great joy...”

Whuzzat? With fear? And great joy? Sounds like an oxymoron.

No, it’s no oxymoron. Our emotions are seldom simple and elemental. They’re often mixed.

Actually, there are times in life when fear and joy do coexist. Try to imagine the first time you fell in love, and realized that person you loved felt the same way about you. Did you ever feel more alive than in that moment?

And wasn’t it also true that, having asked that special person (or having been asked) to go out on a date, and having heard that person say yes (or having said yes yourself), the thought suddenly occurred to you that you would have to actually participate in said date, and you would somehow have to avoid making an idiot of yourself? Fear and great joy!

Or, think about the most significant graduation ceremony of your life, that highest level of education you’ve completed. If you were able to attend such a ceremony, recall the joy of accomplishment you felt that day, in cap and gown, looking around at the grinning faces of all your classmates. Remember, too, the other thought that came to you at that moment: “What am I going to do tomorrow?” Fear and great joy!

Brides and grooms on their wedding day, first-time parents driving that baby home from the hospital – on these and many other occasions in life, fear and joy coexist. Not without some tension between them, perhaps, but there it is. This is the life.

The two Marys were likely feeling something similar, because the first thing the risen Jesus says to them is “Do not be afraid.”

This has nothing to do with whether or not they may happen to disbelieve what they’re seeing, or whether or not they suspect it may be some sort of ghostly apparition, some wraith vomited up from dark places to bedevil them. No, I think they realize who it is, and can at least grasp the bare outlines of the paradigm-busting wonder that’s taken place. I think the two Marys are afraid because they realize what the resurrection is going to mean for their lives.

Surely these wise women realize that, if they continue on as Jesus’ followers, and go tell the other disciples the good news they’ve just heard and seen, they’re going to unleash into the world a powerful force that there will be no stopping. From this day onward, they’re going to be riding a mighty wave that will propel them onward with terrific force – and at times that position on the crest of the wave will be a dangerous place to be.

Yes, of course they’re going to do it, of course they’re going to bring the good news to their companions. But their fear and their joy are intermingled.

This is the life. This is the new life God has given them. Yes, perhaps they recalled hearing Jesus say he’d come that they might have life, and have it abundantly, but until this moment those had been nothing more than inspiring words, a rhetorical flourish. How could they possibly have known that new life would come to them through the nail-pierced hands that now rest on each of their heads, and through the nail-scarred feet they are even now washing with their tears?

The Danish theologian Søren Kierkegaard once described this aspect of the Christian life using a very vivid image. He said that sharing the Christian faith with others is like handing them an extremely sharp knife.

A sharp knife is a useful tool. The greatest chefs, in fact, take meticulous care of their knives, sometimes even packing them into special carrying cases and bringing them home at night, so no damage will come to them. No one, Kierkegaard goes on, would think of handing a sharp knife to another person as one would hand over a bouquet of flowers. It’s just not done.

One of the first things we teach kids, in our church’s Cub Scout Pack and Boy Scout Troop, is how to safely hand a knife to another person. The boys don’t earn their “Totin’ Chip” – the special wallet card that allows them to carry a pocketknife – until they learn how to hand an open knife to a fellow Scout handle-first, and not let go of it until the other person says, “Thank you” – indicating he’s got it safely in hand. That’s because a knife is a useful implement, but it’s also dangerous. You’ve got to have a healthy fear of knives before you can use them safely.

Faith is just that sort of tool for living life as a cancer survivor. Most of us aren’t going to be cured, physically, by our faith. For whatever reason, God doles out complete spiritual healing only rarely, and according to no logic we can understand. Yet, if we’ve learned how to take this elegant tool in hand and use it safely - preventing it from slipping and causing further injury - we’ll find ourselves much better-equipped for living through days and years of remission and relapse, of tests and treatments.

Christian faith doesn’t put an end to fear. It does, however, take the natural, human fears we all have and puts them in perspective. Without the inner peace that comes of faith – which we Christians describe as knowing the risen Christ – the ordinary fears of human life can rage out of control, wreaking havoc in our lives, and in the lives of those we love.

The crucial difference comes from the other part of the equation: the “great joy” that counterbalances our very human fears. We can still seek it, even in the midst of cancer. Even a cancer-burdened life is still life, and Christ has promised that, in him, we can live abundantly.

I’m No Healthcare Consumer

2011-04-23T00:08:00.004-04:00

Yesterday's New York Times contained a very sensible column by Paul Krugman. He asks a question that’s really rather obvious – so obvious, in light of our national healthcare-funding woes, it’s escaped the attention of a great many who ought to be asking it:

“Here's my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as "consumers"? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car - and their only complaint is that it isn't commercial enough.

What has gone wrong with us?”
– Paul Krugman, “Patients are not Consumers,” New York Times, April 21, 2011.

This is more than a mere quality-of-life question. It’s got big implications for economics, as we continue to struggle through our national healthcare-funding debate:

“Consumer-based" medicine has been a bust everywhere it has been tried. To take the most directly relevant example, Medicare Advantage, which was originally called Medicare + Choice, was supposed to save money; it ended up costing substantially more than traditional Medicare. America has the most ‘consumer-driven’ health care system in the advanced world. It also has by far the highest costs yet provides a quality of care no better than far cheaper systems in other countries.”

The problem is that there are an awful lot of people out there who profess an unquestioning, fundamentalist faith in what economist Adam Smith called, way back in 1759, “the invisible hand” of the market. For him, it was probably just a metaphor, but for his latter-day followers, it’s become a virtual deification of free enterprise. Attached to that invisible hand, in their fantastic imaginings, is a new Olympian god, who effortless regulates human affairs through astute transfers of capital.

That would be of little significance, were not living, breathing human beings mightily affected by such transfers.

That makes it, as Krugman correctly points out, a moral issue.

April 21, 2011 – Radiation Pill?

2011-04-21T01:17:00.002-04:00

It seems lymphoma treatment isn’t the only cancer-treatment field that’s rapidly changing. Today I come across an article on my other cancer – thyroid cancer – indicating that one treatment that’s been talked about for me is currently being reconsidered by the experts.

I’ve been hearing all along that, once my thyroid is removed surgically, I’ll probably need to follow up with a single radioactive-iodine treatment. This is a dollop of radioactive material encased in a small pill, that I would swallow several weeks after surgery. Because thyroid tissue thirstily slurps up iodine, if it should happen that there’s any thyroid tissue remaining in my body after the surgery, the radioactive iodine would zap it.

Now, it turns out the radioactive iodine is risky in itself, and is possibly the cause of some secondary cancers. Recent studies indicate that a more nuanced treatment decision now needs to be made, weighing the likelihood that there is indeed any remaining malignant thyroid tissue against the slight – but real – risk of the radioactive iodine running amok and causing another cancer elsewhere.

The American Thyroid Association is now saying that radioactive iodine “should be used selectively and [only] in patients with intermediate and high-risk thyroid tumors.”

So, with a nodule presently at 1.5 centimeters, how’s my tumor classified? I didn’t ask Dr. Boyle about precise staging, so I can’t be sure.

That’s one thing I’ll need to remember to ask the doctor about, as the time of surgery draws near.

In the meantime, it’s Holy Week, and I’ve got a whole lot of other things on my mind. Sermons to write!

March 28, 2011 - Surgery Is Scheduled

2011-03-28T16:29:00.018-04:00

Time to bring you all up to date on my decision-making about the thyroid surgery.

Last Wednesday I drove up to Memorial Sloan-Kettering Cancer Center’s satellite outpatient facility in Basking Ridge, New Jersey for a consultation with otolaryngologist Dr. Jay Boyle, who had been recommended to me by my lymphoma second-opinion physician, Dr. Carol Portlock.

Everything went smoothly at the Basking Ridge facility, which is in an impressive new building located a convenient one-hour drive from our home. After the usual filling-out of forms and a quick interview with an intake nurse, Dr. Boyle came right in and gave me all the time I needed to ask my questions.

I asked about whether I’d need to have the whole thyroid removed or whether a lobectomy (removing one lobe, or half the gland) would be a possibility. He said the scan results confirm there’s malignancy in both halves of the thyroid, so it all has to come out.

A follow-up radioactive iodine treatment is a possibility, but he wouldn't be able to say for sure about that until after the surgery.

Because it's a slow-moving cancer, we'd have a little time to think about it and choose a convenient date.

It’s highly unlikely that my thyroid cancer is in any way related to my lymphoma. Seems I’ve had a bad roll of the dice, two times running.

Dr. Boyle was very upbeat about the prognosis, as well he should be. Thyroid cancer is one of those rare malignancies that’s nearly 100% treatable with surgery. The surgery itself – while somewhat delicate, due to the thyroid’s location in the neck – is not very invasive, since the gland is very close to the surface. He explained there would be some stitches, but they’d all be internal and would dissolve on their own. A bright red scar, which he endeavors to hide as much as possible within naturally-occurring fold lines in the skin of the neck, would be visible for about a year or so, but would eventually fade so it’s only visible upon close examination.

An overnight stay in the hospital is a given, but nearly everyone goes home right after that and is able to resume normal activities in a few days. (I learned later, from one of the nurses, that MSKCC is starting to do some thyroid-removal operations as same-day surgeries.)

I do have a slight concern about a possible side-effect from the surgery, which is damage to the voice. This sometimes happens as a result of damage to one of the nerves that controls the functioning of the vocal cords, which are nearby. I explained that I may be more concerned about this than most patients, because I use my voice for a living. Dr. Boyle assured me that the national rate for this sort of complication is about 1%. “With me,” he said, “it’s a great deal lower than that.”

He dropped that statistic into the conversation in a matter-of-fact way that sounded in no way boastful (although I suppose it may appear that way, upon reading those words).

Afterwards, I spoke with one of the nurses about long-term issues, and she confirmed what I already knew, that I’ll need to take synthetic thyroid-hormone medication for the rest of my life. “If you miss a day or two, it’s no big deal,” she explained. “If you go on vacation for a couple weeks and forget to bring your pills with you, you need to find a pharmacy and get your prescription filled. Go six months without taking it, and you’re dead.”

Well, that doesn’t leave much ambiguity, does it?

I liked Dr. Boyle. There’s no doubt he’s one of the foremost thyroid surgeons around. While it’s a relatively simple operation, with a very high chance of success, why shouldn’t I go to one of the top-ranked surgeons, as long as he’s relatively close by and can fit me into his schedule?

It doesn’t hurt that he’s a Presbyterian, either. When he learned what I do for a living, he mentioned that he’s a member of the Westfield, New Jersey church.

A little while ago, I called Dr. Boyle’s office and confirmed a surgery date of Friday, May 27, at MSKCC in Manhattan (they don’t do surgery at the Basking Ridge facility). I’ll go into the city on May 2 for pre-admission testing.

I feel good about this, like I’m making good progress in dealing with it. As I said to someone else recently, when it comes to dealing with a new cancer diagnosis, it’s a real advantage to be a veteran.

March 26, 2011 – New Follicular Lymphoma Treatment Guidelines

2011-03-26T11:39:00.004-04:00

Here are a couple of big changes in standard treatment guidelines for follicular NHL. According to the National Comprehensive Cancer Network, Rituxan plus Bendamustine (a single chemotherapy agent) is evidently replacing R-CHOP, the cocktail of Rituxan plus four chemotherapy agents I received, as the standard, first-line treatment. Bendamustine is more easily tolerated and doesn’t typically lead to alopecia (hair loss).

There’s also a change in the NCCN-recommended treatment for relapsed follicular lymphoma: Rituxan maintenance and chemotherapy followed by radioimmunotherapy.

If I were presenting as a newly-diagnosed NHL patient today, I don’t know if this new first protocol would apply to me; nor do I know, were my NHL to come back with a vengeance, if the second option would be what Dr. Lerner would order up. That’s because my initial diagnosis was not follicular, but diffuse-mixed-large-and-small-cell. The small-cell type I now have has many similarities to follicular lymphoma, but it isn’t exactly the same.

Still, it leads me to wonder if this news story is significant for any treatment I may one day need.

It’s interesting for me to hear that both Rituxan maintenance (that’s Rituxan administered not only along with chemotherapy, but also on its own, as a monthly maintenance infusion over a couple of years) and radioimmunotherapy (Bexxar or Zevalin) are moving up in the medical world. I've written about both of these in the past, as I've become aware of discussions about their possible usefulness. Now these treatments seem to have moved to the head of the pack - at least for follicular lymphoma.

March 22, 2011 – Another Cancer

2011-03-22T14:42:00.006-04:00

It’s official: I have to undergo cancer treatment again. Only this time, it’s not for lymphoma. It’s for thyroid cancer.

Ever since my chemotherapy ended, I’ve been having routine scans every 3 or 4 months to monitor my NHL. Two scans ago, a PET/CT scan flagged an area at the base of my neck as a possible malignancy. Then, an ultrasound turned up a nodule on the left side of my thyroid gland.

It was too small to biopsy. Dr. Jay Sher, the endocrinologist I consulted, recommended “watch and wait.”

Several months later, I had a follow-up PET/CT scan. The nodule had doubled in size, to around 1.5 centimeters. I contacted Dr. Sher, who sent me for another ultrasound, then a needle biopsy.

The results are now in: papillary thyroid cancer. I learned the results not from Dr. Sher, who didn’t phone me soon after receiving the results, but from our family-practice physician, Dr. David Cheli, who called late last week. He’d received a copy of the pathology report and phoned to tell me what’s in it. He reassured me that this form of thyroid cancer is highly treatable.

A few minutes later, I called Dr. Cheli’s office back and asked them to fax me a copy of the pathology report, and I’m glad I did. If I hadn’t done that, I would have waited a long time to learn of the details. Dr. Sher’s office staff told me on Wednesday they’d received the pathologist’s narrative report, but he didn’t actually call until yesterday – and then, only after I’d left two messages for him and faxed his office my own copy of the pathology report, as a back-up.

On the phone, Dr. Sher was upbeat and jocular. This is the most treatable of all cancers, he told me. “We just pop your thyroid out, you come back a little later and take a pill, and you’re all done.” Absolutely nothing to worry about.

Around here, it seems, it’s harder to get through to an endocrinologist than any other kind of doctor. (Medical Student Alert: if supply-and-demand makes a difference to your career choice, maybe you ought to think about endocrinology).

Dr. Sher told me he often works with a Dr. Sean Houston, an otolaryingologist who does the actual thyroid surgery. He suggested I phone Dr. Houston and set up a surgery date, then let him know when it’s going to be.

Dr. Lerner had mentioned a Dr. Alexander Shifrin, a well-regarded local surgeon who does a great deal of thyroid operations. I mentioned Dr. Shifrin’s name to Dr. Sher, but he suggested Dr. Houston instead, explaining that all his patients go to him, with very good results.

My situation seems so cut-and-dry, with a clear treatment protocol and a very optimistic prognosis. I actually thought for a minute or two about not bothering with a second opinion, but then I reminded myself of my own advice to so many others. Yesterday, I called Dr. Carol Portlock’s office at Memorial Sloan-Kettering, then faxed them a copy of my pathology report.

Dr. Portlock’s assistant, Ernestine – one of the most friendly and efficient people I’ve ever had on the other end of a telephone line, bar none – explained that the doctor would surely want to refer me to a colleague in the thyroid department at MSKCC. That was exactly what I’d expected, but I figured it was best to start with my established connection, so as to get an internal referral.

This morning, Ernestine phoned back with the name of Dr. Jay Boyle, an otolaryngologist at MSKCC. I phoned for an appointment, and learned that he has an opening for a consultation tomorrow morning at their satellite location in Basking Ridge, NJ. Because that’s a much more convenient location than Manhattan, and because the next opportunity would be a week later in Manhattan or two weeks later in Basking Ridge, I jumped at it.

A flurry of phone calls later, and I’ve got all my ducks in a row to pick up my PET/CT disks from Dr. Lerner’s office this afternoon, and my pathology slides and ultrasound disks from Jersey Shore first thing tomorrow morning. From there, I’ll drive straight to Basking Ridge. They can't seem to locate the disk from my January 31 PET/CT scan, but that's not so important. It's the thyroid ultrasounds and the needle biopsy slides that Dr. Boyle will probably be most interested in.

Thank goodness, I know how all these systems work. If I’d been a cancer newbie, I’d never have been able to gather all that material together in such a short time (and I’m grateful to some very understanding people at Jersey Shore’s pathology department, who waived their usual 24-hour waiting period for getting pathology slides ready for release).

So, here we go again. Because of the highly favorable prognosis, I’m far less worried than I was at the time of my lymphoma diagnosis. If I have any anxiety other than the normal jitters about going into an operating room, it has to do with the delicate nature of thyroid surgery in general. I use my voice for a living, so I want to make sure any surgeon messing around near my larynx and vocal cords is very experienced indeed. Where and when I’ll go for the surgery remains to be seen, but the next few days will tell.

March 11, 2011 - Needle to the Neck

2011-03-12T16:50:00.010-05:00

Today I go to the Ambulatory Care Center at Jersey Shore University Medical Center for my thyroid biopsy. I have to say, I’ve been pretty nonchalant about the whole deal, figuring that even if there is a malignancy, the nodule is very small. My online research has reassured me that treatment of thyroid cancers is likely to be highly effective.

The one thing that’s given me pause is the thought of sitting there, conscious, while somebody sticks a needle in my neck.

They’ve told me they’ll numb the area – and I’ve had plenty of needles before, with my endless blood work – but this is the neck, and somehow that seems different from the inside of the elbow or even the area by my collarbone where my port is located.

Earlier, when I spoke on the phone with the scheduler from that department of the hospital, I asked if patients reported much pain from the procedure. “Everyone’s pain threshold is different,” she replied, cagily.

Well, isn’t that reassuring?

As it turns out, I’ve got nothing to worry about. Dr. Wahid Girgis, the interventional radiologist, comes into my little cubicle in the waiting area and begins by telling me, “Of all the procedures we do here, this is by far the easiest.”

I ask him if patients report any pain from the procedure, and he replies with a smile, “I haven’t had a complaint yet.”

A remarkably un-cagey response, for a doctor.

Turns out he’s right. They wheel me on a gurney into the interventional radiology room. I eye a hulking machine to my left, that hangs something resembling an overturned drum-head over an operating table, but it turns out they don’t need to use that contraption on me. The only thing Dr. Girgis uses the operating table for is to spread out his gear. A nurse wheels an ultrasound machine on a cart over to my gurney, and they get busy right there.

Off to one side is a “cytologist,” with her own equipment-filled cart. I ask the nurse what a cytologist is, and she says, “a cell specialist.” Turns out her job is to take a look at the tissue sample and make sure it’s got enough thyroid-nodule cells in it to send off to the lab, before they send me packing.

It’s all over in less than 5 minutes. I honestly say I can’t feel any pain, just a little pressure.

A band-aid on my neck, and I’m good to go.

Results are supposed to be here by Tuesday

More waiting. But, what else is new?

February 22, 2011 – It Pays to Shop Around

2011-02-22T09:22:00.004-05:00

Here’s an eye-opening statistic: “Most Americans will spend more time comparison-shopping for flat screen TVs than searching for the best doctor possible.”

Kairol Rosenthal, an author who cites this statistic, is a cancer survivor who proudly tells of how she works the system:

“I approach the challenges of the system as if I’m on a personal vendetta. I crush the system like a superhero who has grown a hundred times my size. I sleep at night knowing I have done everything within my power to influence my outcomes. This is my definition of well-being.”

That’s beyond proactive.

Not everyone would put it so zealously, but she’s got a point about the importance of getting second opinions. We don’t survive cancer by just sitting back and waiting for medical professionals to do things for us. We’ve got to question, to research, to learn. We’ve got to insist that our doctors give us the time and information we need to make informed decisions. We’ve got to learn the art of negotiating with insurance companies. We’ve got to keep track of those test results and make sure they get forwarded to the proper specialists. We’ve got to become our own best advocate.

I’ve been fortunate, that way. I feel blessed to have the sorts of doctors who give me far more than the time of day, and aren’t put off by talk of second opinions. But that doesn’t mean I can slack off on my homework.

There is an alternative, of course. We could just sit home and watch that flat-screen TV.

February 19, 2011 – Incidentaloma

2011-02-19T21:00:00.005-05:00

A couple weeks ago, I had another of my periodic PET/CT scans, which are becoming as routine as that sort of thing can possibly be. When I called Dr. Lerner’s office for the test results a week later, the nurse called me back and said the PET scan had revealed some unexplained “uptake” on the left side of my thyroid gland, in the area of the small nodule detected last time around.

On that earlier occasion, Dr. Lerner had referred me to Dr. Jay Sher, an endocrinologist. After subsequent tests, Dr. Sher pronounced the nodule too small to be concerned about, and not large enough to biopsy. He did say it bore watching, though.

Well, it’s no longer so small. On Wednesday I had a follow-up CT scan and ultrasound. Yesterday, I got a call from Dr. Lerner, who informed me it’s doubled in size, from about .80 cm to about 1.60. A centimeter and a half still sounds pretty insignificant to me, but I suppose in the world of endocrinology that calls for a closer look.

So, that’s what we’re going to do. As soon as I hung up after Dr. Lerner’s call, I phoned over to Dr. Sher’s office – it was just before closing time – and left a message. Dr. Lerner’s staff is faxing the scan results over. Someone from Dr. Sher’s office wil call back on Monday, presumably with a referral for an ultrasound-guided needle biopsy.

Dr. Lerner assured me there’s nothing to worry about just yet – most thyroid nodules are benign – but, still, it’s not something to leave unexamined.

Doing a little online research, I came upon a retrospective research study that calculated a malignancy rate of 28.8% in small thyroid nodules discovered in this way. I even learned there’s a name for this phenomenon. Abnormalities that show up on scans ordered for some other purpose are called incidentalomas. As high-tech scans proliferate, more and more of these tiny, mostly benign tumors show up – tumors that would, in an earlier era of medicine, have gone unnoticed.

That’s both a good thing and a bad thing. To the extent that incidentalomas turn out to be something truly serious, early detection is a fortunate – sometimes even lifesaving – coincidence. Yet, most of the time they’re just benign growths. Still, they trigger anxiety in patients who would otherwise go through life blissfully unaware of their existence.

I’m not feeling especially anxious about it, myself. I’m more annoyed, I suppose, that I have to go through this whole biopsy thing again. Having stumbled over the rock, though, we’ve got no choice but to turn it over and see what may be crawling around underneath it.

Be Your Own Advocate

2011-01-14T17:12:00.014-05:00

"Can you make me better, Doc?"

When we're first diagnosed, that's the question many of us may find rising to the front of our minds - whether or not we ever voice it. We look to our doctors to be healers, to cure our illness, to make us better.

Few of us travel very far down Cancer Road before coming to realize there's a lot more to it than that. There's so much to learn about the disease and its treatments.

I can remember the hours I spent reading Elizabeth Adler's Living With Lymphoma: A Patient's Guide (still the most informative book I've found about the biochemistry of this disease). Suddenly I found myself reading, with great interest, all about the chemical components of human lymphatic fluid - a topic I never dreamed I'd have the least interest in. Having cancer changes that in a hurry!

Today my friend and fellow lymphoma survivor Betsy de Parry published an article, "Candid Cancer: An active role in your care matters." Reflecting on her experience as a long-term survivor, Betsy asks:

"So why not just tell the doctor to fix it? The short answer is that medicine has come much too far and become much too specialized for us to simply be passive participants. In many cases, there are treatment choices, and we can only make sound decisions if we understand them. And aside from cancer's physical impact, there are emotional, practical and day-to-day challenges that we need to face and address....

In fact, if there is one thing I've learned from all the survivors I've talked with over the years - survivors of many types of cancer - it's that many of them are healthy because they became their own best advocates and learned everything they could about all treatment options. Many were told they'd be 'lucky' to be alive in a few years. Others simply refused to accept the next recommended treatment and searched for different options. They talked with other survivors and got second or third or fourth opinions."

So, don't be shy. March into your doctor's office with a notebook in your hand, and demand all the time you need to get your questions answered. Bring a friend or family member if that will help you remember what's said. Four ears are better than two.

Don't be overly considerate of your doctor's ego. It's no insult to say you want a second opinion. Good oncologists are used to this. Those who bristle at the suggestion are the ones you need to watch out for.

Don't be passive. Let your doctor know you want to be a full participant in treatment decisions. Ask for full explanations of why one treatment may be better than another, and ask for time to consider the various options, if that's appropriate. Go to the library or onto reputable websites (like www.cancer.gov) to get the full story (or as much of it as your non-medical mind may be able to comprehend). There are lots and lots of good resources out there that seek to explain cancer so ordinary folks like us can understand it.

Jesus tells an odd little tale in Luke 18:1-8 that's often called the Parable of the Importunate Widow. That's an old-fashioned way of saying, "the Parable of the Pushy Broad." In the story, a poor widow is seeking justice from an unjust judge. He's a jaded bureaucrat who can't be bothered with shuffling case files from his inbox to his outbox any quicker than he absolutely has to. This widow, though, makes a pest of herself. She just keeps knocking on his door until he's obliged to rule on her case. Jesus ends by saying something to this effect: "If even a pushy broad like that can get some action out of a corrupt judge, won't our God of mercy pay even more attention to your prayers?" It's a word to the wise.

So, speak up for yourself. If you don't do it, who will?

Your doctor will respect you for it.

An "N" of 1

2011-01-07T16:04:00.014-05:00

I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:

"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."

That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.

I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.

I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.

"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)

That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.

He intuitively understood what President Faust is talking about. He knew he was an "N of 1."

The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."

According to "N of 1" thinking, that's OK, too.

Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.

It's the art of living.

"If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast."

- Psalm 139:9-10

Not the Best Health-Care System

2011-01-06T12:29:00.032-05:00

A few minutes ago, I happened to catch a few minutes of news coverage from the U.S. House of Representatives. Members of Congress were taking turns reading from the U.S. Constitution. This was the first time in history, the newscasters informed us, that the entire Constitution has been read aloud on the floor of Congress.

It took me back to my old Sunday School days. Our teacher used to ask us kids to take turns reading through a passage of scripture aloud, with each person reading a single verse.

Have we come to this? I know remarks have been made about the Tea Party movement treating the U.S. Constitution as a fundamentalist might treat the King James Version of the Bible, but when I saw it in action just now, the effect was chilling. John Calvin called the human race "a perpetual factory of idols." It would seem we've found ourselves a new one.

The U.S. Constitution is a remarkable historical achievement, and a model for democracies the world over. It is worthy of our respect and honor. But, to treat it as holy writ? I think there's a reason why this is the first time in history this stunt has ever been pulled: because previous generations - including the framers of the Constitution themselves - had better sense. I can imagine Ben Franklin rolling over in his grave right about now.

One commentator has estimated the cost to taxpayers of this little publicity stunt at $1.1 million.

Let's see, now... what does this story remind me of? Could it be when, in Nehemiah 8, Ezra the scribe reads the law to the people of Israel, freshly returned from exile to a ruined Jerusalem? Isn't it just a wee bit of hyperbole to imply that a mid-term change of party leadership in one of the two houses of Congress is a parallel situation of nationwide repentance from apostasy?

"And Nehemiah, who was the governor, and Ezra the priest and scribe, and the Levites who taught the people said to all the people, 'This day is holy to the Lord your God; do not mourn or weep.' For all the people wept when they heard the words of the law." (Nehemiah 8:8)

Oh, pull-eaze!

What really concerned me, though, was to hear the new Speaker of the House, John Boehner, lambasting the recently-enacted healthcare reform legislation and vowing to repeal it. I don't recall him ever mentioning the words "healthcare reform" without prefixing it with "job-killing." I lost track of the number of times he said "job-killing healthcare reform."

Is that all they've got? Just take their talking-point and repeat it again and again, ad nauseam? I don't recall potential loss of jobs being a major debating point when the legislation was first passed. Why didn't the opposition make a point of it the first time? Even if a significant number of jobs were to be lost because of this legislation - seriously doubtful, but let's grant the point for a moment - is preserving a modest number of jobs worth it, if most of working America continues to be just one medical crisis away from destitution?

Come to think about it, in making the job-loss argument, isn't Mr. Boehner conceding that the healthcare-reform legislation is, in fact, creating a system that's more cost-efficient than the one we've presently got? Wouldn't the elimination of a limited number of administrative-support jobs be, sadly, necessary, in order to accomplish the financial efficiencies that everyone agrees must be the goal if healthcare is to become affordable again?

Mr. Boehner, by the way, is the same man who, in the midst of a debate on tobacco-growers' subsidies in 1995, personally distributed campaign-contribution checks from tobacco lobbyists to his fellow members of Congress on the House floor.

Yes, he did. On the House floor. (He later apologized for it, explaining that it wasn't technically against House rules, then led a campaign to reform the House rules to prohibit what he'd just done. To protect the country from people like himself, I suppose.)

Mr. Boehner went on to repeat another phrase endlessly: "the best healthcare system in the world" - as in "they are trying to take down the best healthcare system in the world."

Mr. Boehner can be admired, perhaps, for his patriotism, but it's blind patriotism when it ignores the facts. The last time the World Health Organization published a healthcare-ratings table of the nations of the world, in 2000, the United States ranked 37th. France was number 1 - something even the conservative magazine Business Week admitted, in 2007, is a pretty impressive achievement.

In claiming the U.S. healthcare SYSTEM is the world's best, our new Speaker of the House is at best mistaken, and at worst engaging in a baldfaced lie. Yes, the healthcare available to certain people in the United States, and to certain well-heeled foreign nationals who fly here for treatment, is among the world's best. Yes, our nation is at the forefront of medical research. But our healthcare system - the overall structure whereby healthcare is delivered to the citizenry at large - is costly, inefficient and just plain broken for huge numbers of sick people. Worst of all, the sicker you get, the more you pay.

(That, by the way, is one thing the author of the Business Week article cited above admires about the French system. In France, the sicker you get, the less you pay.)

I don't seriously think this move to repeal last fall's landmark healthcare bill will succeed. There are still enough votes in the Senate to protect it. Contrary to the anti-healthcare talking-points, a huge majority of the American people still favor it. This is mere political posturing, just as reading the Constitution aloud on the floor of the House is political posturing.

Yet, those of us who are concerned for the health of all Americans - not just the holders of Cadillac medical-insurance policies like members of Congress - ought not to be complacent. This move is a major threat to the health, happiness and survival of millions of hardworking people. It seeks to perpetuate a corrupt system whereby big-business interests siphon off billions of dollars in profits, while poor and middle-income people die unnecessary deaths.

Remember, this is the man who once handed out checks from tobacco lobbyists on the House floor. That shows whose side he's really on.

January 3, 2011 - Just the Facts

2011-01-03T19:25:00.013-05:00

Today, I run across an updated fact sheet on Relapsed/ Refractory Follicular Lymphoma from the Lymphoma Research Foundation.

Although my initial staging was "B-cell, diffuse mixed large and small cell," the assumption Dr. Lerner and I have been making is that the relapsed cancer we've been monitoring for the past four and a half years is follicular lymphoma (a small-cell variety). It seems to be behaving in the indolent fashion typical of follicular lymphoma, anyway. After making its first appearance 8 months after my final round of R-CHOP chemotherapy, it's been snoozing.

We've still not been able to get an excisional biopsy of the relapsed cancer. The affected lymph nodes that keep showing up on my scans are not in an easy place to access surgically. There was one attempt to do so, with a swollen lymph node at the base of my neck. That brought me all the way to the operating table, but was called off at the last minute when the surgeon could no longer feel the affected lymph node.

Based on what I've learned about the disease, I'd say the fact sheet is a good one. It reflects some of the latest developments in research. It doesn't mention idiopathic vaccine treatments, though, that are still being researched.

The fact sheet communicates some wonderful news: that, thanks to the energetic researchers working in this field, there is now a range of possible treatments to choose from.

Here's another write-up, from the National Cancer Institute website. One line from that summary of recent research that catches my eye is this one: "For patients randomly assigned to watchful waiting, the median time to require therapy was 2 to 3 years and one-third of patients never required treatment with watchful waiting (half died of other causes and half remained progression-free after 10 years)."

I'm already past the 2 or 3 year median, and have a pretty good chance of landing in the one-third of patients that never require further treatment.

At such time as further treatment may be called for, I think I'd lean in the direction of radioimmu- notherapy (a single dose of Bexxar or Zevalin). Either of those medications seems to me to strike a good balance between effectiveness and quality-of-life issues. I'd rely heavily on Dr. Lerner's recommendation, of course, and would also go for a second opinion with Dr. Portlock, as I did before.

Stem-cell transplant is potentially the most effective treatment of all - but that's riskier, involves multiple side-effects and presupposes that a compatible donor could be found (we've already discovered that neither of my two brothers are a good match, so I'd have to depend on the national donor registry).

So, those are the facts (at this point in time).

December 27, 2010 - Putting the "Death Panel" Myth to Rest

2010-12-27T01:10:00.025-05:00

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

December 23, 2010 - A Champion Gift-Giver

2010-12-23T13:43:00.009-05:00

There's lots of talk, this time of year, about gifts and gift-giving, but here's a gift-giving story that will warm your heart. It comes from the sports pages, of all places.

Matt Hoffman is a defensive end for the Rowan University football team, here in New Jersey. Recently he was one of three runners-up for the Gagliardi Trophy, which is given to the most outstanding football player in Division III of the NCAA. It's that Division's equivalent of the Heisman Trophy.

Matt had put himself on the National Bone Marrow Registry's list of potential stem-cell donors some time back. Last November, his number came up. Matt's blood chemistry, it seemed, was a good match for a non-Hodgkin lymphoma patient, a stranger to him, who urgently needed to undergo the transplant procedure.

The only problem was, for Matt to say yes to the request to donate meant he would have to take some powerful medicines, whose side effects would prevent him from playing in the final football game of his Junior-Year season.

The voting for prestigious sports awards like the Gagliardi Trophy is heavily dependent upon statistics. For an outstanding player like Matt Hoffman to miss even a single game is a really big deal. It can mean the difference between being the trophy recipient and being the runner-up (as Matt turned out to be).

Matt didn't hesitate. He told his coach he couldn't play that day, because he had to go into the hospital to donate stem cells. For a stranger.

A few weeks ago - in the moments before the Gagliardi Trophy awards ceremony - Matt had the opportunity to meet the man who received his stem cells. The National Bone Marrow Registry puts a one-year moratorium on sharing the names of recipients, but after that year had elapsed - and with the consent of both parties - they brought the two men together. Matt had the opportunity to meet Warren Sallach, a 59-year-old road maintenance worker from Texas, who continues to be in full remission more than a year after receiving his stem cells.

It was an emotional occasion for both of them. Matt called it "one of the best moments of my life."

I'd be hard-pressed to think of a better gift-giving story than that. Matt Hoffman may be a runner-up for the Gagliardi Trophy, but he comes in first for an even more prestigious trophy, in my book.

Merry Christmas, one and all!

Why I Do It

2010-12-21T17:20:00.005-05:00

Sometimes I wonder why I write this blog - why I started it in the first place; why I kept it up during some very difficult days, when I hardly felt up to it; why I keep doing it, more than 5 years after my diagnosis and more than 4 years into watch-and-wait so-called "treatment."

An answer has turned up in Britain's Guardian newspaper, as a psychologist speculates on why people write illness blogs. Here, a fellow cancer blogger, Sue Eckstein, quotes Dr. Tom Farsides:

"I'm just one of many hundreds of people who blog about their illness or trauma, and, according to Dr Tom Farsides of Sussex University, this is not surprising: 'Writing is an effective way of processing and coming to terms with challenging and potentially traumatic events,' he says. 'But blogging is more than the mere act of writing. It also fosters senses of both control and social connection, each of which is crucial for psychological wellbeing.'"

Oh, yeah. That's why.

December 7, 2010 – Remembering Elizabeth

2010-12-07T22:22:00.010-05:00

Sad news, this evening, of the death of Elizabeth Edwards. Evidently, in the end it happened very quickly for her, which is a mercy.

The “late unpleasantness” of her husband’s irresponsible behavior has dominated the headlines in the past year or so, and many of us were very sorry to see that burden added to those Elizabeth was already carrying. It speaks to the strength of her character that, through faith and sheer determination, she somehow found the inner strength to be there for her family, to face the television cameras with her head held high and to continue to use her celebrity status to exercise compassion for others.

Her books, in which she candidly shared her life story, have been an inspiration.

Newsweek’s Jonathan Alter, himself a lymphoma survivor, shared a frank exchange he had with Elizabeth about her Christian faith, and the doubts she sometimes experienced, about both her cancer and the tragic, accidental death of her son, Wade:

“When I arrived, Elizabeth told me that cancer had essentially freed her to say whatever the hell she wanted. Then she proved it, by questioning the one thing all presidential candidates and their spouses must embrace - religious faith: ‘I’m not praying for God to save me from cancer. God will enlighten me when the time comes. And if I’ve done the right thing, I will be enlightened. And if I believe, I’ll be saved. And that’s all he promises me.’ But did she believe? Here she went further than any public figure this side of Christopher Hitchens.

‘I had to think about a God who would not save my son. Wade was – and I have lots of evidence; it's not just his mother saying it – a gentle and good boy. He reached out to people who were misfits and outcasts all the time. He could not stand for people to say nasty things about other people; he just didn’t want it. For a 16-year-old boy, he was really extraordinary in this regard. I wish I could take credit for it, but I can’t. You’d think that if God was going to protect somebody, he’d protect that boy. But not only did he not protect him, the wind blew him from the road. The hand of God blew him from the road. So I had to think, ‘What kind of God do I have that doesn’t intervene - in fact, may even participate - in the death of this good boy?”

That’s so like Elizabeth Edwards. She always told it like it is. Unlike so many people in public life who live elegantly fabricated lives, she was real.

Elizabeth will be well-remembered by those of us in the cancer community as a determined survivor, an encourager of others, an activist for change - and yes, a woman of faith. Let us offer prayers of thanksgiving for her life and witness.

December 2, 2010 – 5-Year Cancerversary

2010-12-02T08:19:00.007-05:00

Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.

So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.

Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.

My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.

Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.

In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.

So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.

Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.

There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.

November 18, 2010 – Help! I’m a Market Segment

2010-11-18T02:23:00.002-05:00

I ran across this link recently, describing a subscription newsletter issued by a financial-information firm, communicating the latest news and statistics on “the global NHL market.”

Yes, that’s right. The “NHL” in “NHL market” refers to non-Hodgkin lymphoma. There are actually financial analysts out there who make it their business to study the strength of companies developing drugs and other therapies to treat NHL.

We all know that health care in this country is profit-driven, but this displays the seamy underside of that reality. Some of these technological developments tracked by this service represent life and death for people like me. We follow this information in order to stay as healthy as we possibly can. Subscribers to this newsletter follow the same information in order to make a buck. Lots of bucks, actually.

I read this stuff and I end up feeling vaguely dirty, for no particular reason. How does it strike the rest of you, especially folks who are dealing with cancer?

November 7, 2010 – Gratitude on the Radiation Table

2010-11-07T19:37:00.003-05:00

Paul Bresnahan is an Episcopal priest who served with me on the writing team for the internet sermon resource, The Immediate Word, back when I was working as the team’s convener. Recently I came across a blog post of his, reflecting on his own cancer experience. Here's an excerpt:

“Prostate cancer struck me well over a year ago, and I have been living with Jesus as I always have and then journeyed through surgery and now radiation. God has given me the privilege of sharing my journey with others who gather with me in the waiting room at Massachusetts General Hospital in Boston. We share our joys and sorrows, our hopes and our fears, our aches and our pains.

We cheer one another along. Last week when I was called for a radiation treatment, I quipped: ‘My turn to shine.’ My companion for the day told me that the entire waiting room erupted in laughter as I left the room. ‘Who is that man?’ several asked. ‘He is my parish priest,’ was the proud answer. And thus the witness to Jesus' love and healing touch tickled those within the Cox Center for Cancer Treatment at one of the world's great hospitals.

Inside the treatment facility, as I lay on the table with a giant metal fork rotating around me and beaming its rays within my body, I saw the hand of God and sensed a healing touch within me. I saw no vision other than the hand of science and medicine ministering to me out of the gifts God so generously bestows upon the care giving community in my home city. The beaming rays of radiation give me the gift of healing and of life, and I am brim full of gratitude.”

It’s so true that the eye of faith can sometimes glimpse the hand of God in all kinds of things. Even a piece of radiation therapy equipment.

October 29, 2010 – On Meeting Oneself

2010-10-29T22:09:00.005-04:00

Yesterday, my 54th birthday, I caught a National Public Radio interview on the car radio with singer/ songwriter Sheryl Crow. Amidst the usual light chat about music, songwriting and the like, the interviewer asked Sheryl about her experience as a breast cancer survivor. She had this to say:

“Once I was diagnosed, once I was handed that diagnosis, it was very apparent to me that my life was never going to look or feel the same to me again. And... my lesson... in my diagnosis and laying on the radiation table every single morning for seven weeks was, nobody can take care of me but me. And I wasn't doing that. I was putting everybody's needs before me and, so it was really, you know, I met myself on that radiation table every day and I had to reflect and had to remember who it was I came in as, and had to really sort of redefine my life.”

The line that jumped out at me at the time was: “I met myself on that radiation table every day.”

That sort of thing is part of the cancer experience, especially during treatment. The diagnosis crashes in, like a bolt out of the blue. The normal, everyday activities of life come to a screeching halt. Suddenly, it’s just you, your medical team and your treatment.

Mostly you, though. And a whole lot of time.

You have time to think. To reflect. To reconsider. You may not feel real great, and that may keep you from doing some of the activities most of us usually fall back on, to keep busy and avoid introspection – reading, media, computer. The thoughts flow wild and free. No scenario’s left unturned, when it comes to imagining the worst possible outcomes.

Somehow, out of that chaotic mix there arises a new synthesis. The new normal. We haven’t chosen it, but there it is. At the end of the day, it’s our normal, so we’ll take it. It beats the alternative.

I hear you, Sheryl. What you say is so true.

October 10, 2010 - A Doctor Who Gets It

2010-10-10T00:43:00.011-04:00

Betsy de Parry, a lymphoma survivor and blogger whom I frequently cite in these pages, has published a truly remarkable letter from an oncologist and specialist in rare adrenal cancers, Dr. Gary Hammer. It’s an open letter he wrote to cancer survivors everywhere, in response to an open letter to doctors Betsy had written a few days before.

Dr. Hammer notes in his letter that virtually all his patients die under his care. That’s because the prognosis for adrenal cancers is generally poor. The best he can promise his patients is to buy them a little time, and to enlist them as allies as he and his colleagues chip away at the frustrating search for a cure.

It takes a very special doctor to persevere in medical practice under such circumstances. At the very least, a “thick skin” would seem to be an emotional necessity – surely, not easy to maintain alongside a pleasing bedside manner. (I have a feeling, though, after reading his letter, that Dr. Hammer is one of those rare individuals who can integrate both.) The type of medicine he practices also affords him a rather remarkable vantage-point from which to view the experience of patients living through their last days.

Both letters are worth reading in their entirety, but I’d like to share with you, here, a selection from Dr. Hammer’s. It shows he’s truly been listening to his patients, in the deepest sense:

“Perhaps the most frightening words a person might hear in his or her lifetime are ‘You have cancer.’ This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.

However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.

As a physician engaged in the care of people with a particular rare cancer – where those under my care almost always die – I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.

In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word ‘presence:’ conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.

Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.

Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.”

Based on my experience, I’d say that having a deadly cancer is something like getting off the local train that is the normal pace of life and boarding another. The new conveyance is a bullet train that bears us on rapidly, roaring through many of the normal stages of adult development without stopping, to a windswept, elevated platform overlooking a barren plain – the place where we may contemplate our own death. It’s the terminus, the end of that particular line, a station most people will never glimpse until they are far advanced in years, if at all (those who die suddenly may never see it). We who have wrestled with the cancer angel are familiar with that stark vista, and also know how bewildering this headlong, high-speed journey can be.

Even more bewildering is the return trip. It happens in the flash of an eye. If we’re fortunate enough to see our disease go into remission – or to enter into the extended watch-and-wait “treatment” that’s really a non-treatment – we may suddenly find ourselves seated again on the lurching local milk-run. Around us are our fellow-passengers, snoozing away to the soft, rocking motion of the train. We look around the cabin and at first see only others who are sleeping.

But wait, over there, across the aisle: was that a movement? It was. Another person awake. She and I make fleeting eye contact. Yes. It’s someone else who was on the express, someone who knows.

And what’s that, several rows ahead? Someone else is stirring. A passenger yawns and stretches before he turns around, idly scanning the passenger compartment. He gives me a brief nod of recognition before laying his head back down on the shoulder of his sleeping wife, trying (perhaps in vain) to join her in slumber. Another fellow-traveler. When he closes his eyes, does the stark vision of that empty, elevated platform, surrounded by barren, moonlit prairie, rise up in his imagination?

It’s a wonderful thing to encounter a physician who’s taken the time to know his patients in such an existential way, to try to vicariously experience something of what we’ve been through.

Blessings to you, Dr. Hammer. May your tribe increase. And “thank you” to Betsy for initiating this fruitful exchange.

October 9, 2010 - Comic Relief from The Onion

2010-10-09T14:00:00.008-04:00

OK, this one's a bit out of the ordinary for my blog, but I can't resist posting a link to this "news" story from The Onion, the internet satirical newspaper. It's called "Teen With Cancer Vows It Won't Keep Her From Being Mean, Moody Little S**t."

(Sorry for the profanity, both in the headline and in the article, but you'll see how it makes literary sense in this case.)

The article gave me a good chuckle, but it also points out how we who have cancer are who we are. The disease strikes randomly, without regard to personal virtue (or lack thereof).

It's also a sly send-up of all the adulatory talk that goes on about people with cancer. When you get the disease, you find that people are a little more inclined than usual to say complimentary things about you.

Was anyone ever lauded for approaching their so-called "battle" with cancer like a total weenie? I'm sure many have taken precisely that approach. But they never say anything about that when they're hanging the medal around your neck at the Relay For Life.

Don't get me wrong. Cancer can be transformative. I believe it has been in my case, and mostly for the better (although - true confessions time - four and a half years later, I could stand to ditch the procrastinating, devil-may-care approach to personal financial management that I fell into during my chemo-treatment days).

For all the times we survivors may joke about "playing the cancer card," the diagnosis doesn't give us a free pass for treating others with disrespect.

I suppose the experience of dealing with cancer does lead some of us to rethink, maybe even reform, our lives. Others, maybe less so.

Are we somehow obliged to approach our disease like the opportunity for transformation it just may turn out to be? I don't think so. It's an individual thing.

We all do well to try to avoid judging others in that regard. Those who want to take the weenie approach have every right to do so. And they probably still deserve a medal around their neck.

Deep down, I'm enough of a Calvinist to believe that we're all sinners, and that chemo and radiation have little effect on that particular malady.

That cure lies elsewhere.

October 5, 2010 - This Is the Day

2010-10-05T12:17:00.004-04:00

This excerpt from a Presbyterian News Service release tells the story of the death several days ago of singer/songwriter David M. Bailey:

"David M. Bailey, a singer/songwriter who moved audiences as much with his story of personal courage in the face of terminal cancer as with his music, succumbed to Glioblastoma on Oct. 2 in hospice care near his home in Charlottesville, Va. He was 44.

The son of Presbyterian missionaries, Kenneth E. and Ethel Bailey, Bailey was raised in Beirut, Lebanon. He spent some of his youth in Germany — where he learned to play the guitar and began writing songs — before returning to the United States....

In July 1996, he was diagnosed with Glioblastoma, a particularly virulent form of brain cancer. He then quit his corporate job and turned to songwriting and performing full-time.

'They told me I had six months. They were wrong,' Bailey said. 'Despite what you might hear, hope is a very real thing, and with every passing day, there are more and more reasons to hope.'

For 14 years he defied that diagnosis, writing and performing virtually non-stop, covering 45 states and 21 countries. His concerts were deeply personal, brutally honest accounts — rendered in a musical style that has been compared to James Taylor and Cat Stevens — of his struggles with his illness and his determination to make the most of whatever time God gave him.

His signature tune was 'One More Day.' The chorus goes:

'One more day when you can hold your children
One more day you can hold your wife
One more day when you can watch the grass grow
One more day when you can live your life.'"

It calls to mind the familiar scripture verse: "This is the day that the Lord has made; let us rejoice and be glad in it." (Psalm 118:24)

It's a lesson David taught us: how to live in the now, praising God for all good gifts. His music - and that lesson - will live on, through his recordings.

Prayers and good wishes go out to his family.

September 29, 2010 - Watch Those Cancer Cells Get Zapped

2010-09-29T22:24:00.003-04:00

Thanks to Betsy de Parry for posting a link on Facebook to an animated slide show about how targeted therapies (like Rituxan, the drug I received) first locate, then take out, cancer cells.

It's on the website of the National Cancer Institute. The presentation is in a lot of different segments. You need to click on the links in the menu to the right to move on to the next one.

It's nice to see those cancer cells getting zapped, even if it's only an animation!

September 15, 2010 - WLAD

2010-09-15T16:30:00.010-04:00

Just what I need - another acronym in my life!

(Just kidding.) Actually, I'm glad to talk about this particular one. WLAD stands for World Lymphoma Awareness Day, which happens to be today.

And to think I almost missed it!

Not that it's any great celebration. It's just one of those education-and-p.r. vehicles, beloved of medical educators and professional fund-raisers.

There's clearly a need for it, though, because of statistics like these:

* Less than 50 per cent of people know anything about lymphoma, despite the fact that it's the 5th most common cancer, worldwide.

* Almost three quarters (74 per cent) of people don't even know that lymphoma is a form of cancer.

Check out the "Know Your Nodes" online mini-quiz, if you haven't already.

It's hard, sometimes, for survivors like me to explain lymphoma to others. It's a cancer, yes, but as a systemic (rather than localized) cancer, it can be hard for people to understand why the doctors can't just go in there with a scalpel and cut the bad stuff out.

It's also not influenced by any causal factors, like smoking or poor diet or exposure to environmental toxins (at least, not any cause that researchers have been able to puzzle out).

Apart from the occasional swollen lymph node protruding from the base of the neck or maybe in the armpit, if there are symptoms, they're invisible to most casual observers. Lots of people with lymphoma don't LOOK sick - except when they're getting chemo treatments, which can make them look a lot sicker than their disease ever did.

There are a lot of us around the world who have it, though, and it IS life-threatening (although, thankfully, we've got a whole lot of effective treatments that can keep it at bay for a very long time, even if some forms of it can't be cured).

So, Happy WLAD, everyone.

Be aware. Be VERY aware.

And do enjoy what's left of this beautiful fall day!

September 11, 2010 - 9/11 Every 2 Days

2010-09-11T18:10:00.009-04:00

That's the title of an article by Betsy DeParry, whom I've come to know a bit through the online lymphoma community, and through reading her cancer memoir, The Roller Coaster Chronicles. What she's referring to is a well-publicized statistic that 1,500 people die every day from cancer in this country. Approximately 3,000 people were killed in the 9/11 attacks, which means cancer brings about another 9/11 every couple of days.

Cancer doesn't garner the same level of response - and understandably so, from a psychological standpoint. The 9/11 attacks were sudden, brutal, inhuman - and completely unexpected for most Americans. They turned life in our country on its head, and we're still living through a lot of the aftermath.

We're wrapping up one war and still deeply embroiled in another. After conducting those wars in a way our nation has never prosecuted a war before - essentially putting the costs on a credit card, neither raising taxes nor asking for financial sacrifice from the general public - our economy is in a shambles.

More than that, a lot of us are living with a level of fear and anxiety we've never known before. The contentious, fear-driven debate over the construction of the Park 51 Muslim community center in lower Manhattan - not to mention the media's hysterical response to the bigoted wing-nut minister who wanted to hold a Qu'ran-burning party - is ample evidence of that.

I understand the Federal budget is so loaded down, now, with expenses for national security - and those programs are being administered by such a vast, disconnected profusion of agencies, funded in some cases by money from secret budgets - that no one really knows exactly how much we're spending, nor for what.

Betsy doesn't make any observations like these in her article - they're my own, and I'll claim them - but she does recall how, ironically, it was on the anniversary of 9/11 several years back that she received the single radioimmunotherapy (RIT) treatment that has kept her cancer-free ever since. For her, personally, 9/11 is a day of celebration.

That, of course, is an ambiguous legacy, as she herself reflects:

"Yet eight years after winning FDA approval, the two RIT drugs are still caught in the health system's for profit stranglehold that has limited access to between 5 and 10 percent of the patients who might benefit from them. That's like sending the finest emergency crews and state-of-the-art equipment to rescue 5 to 10 percent of the victims of any tragedy and sending the bucket brigade to help the rest. Wouldn't we all be outraged? Just as maddening, targeted therapies like RIT have been hailed as the future of cancer care, but interest in developing RIT drugs for other types of cancer has waned because the RIT drugs for lymphoma have not been commercially successful.

Cancer claims 1,500 Americans every day. That's 9/11 every two days. And it's simply unacceptable, especially when lifesaving treatments like RIT are available for some.

Yes, I'm grateful that eight years ago today, RIT restored my health and kept my family whole, but my celebration is tempered with respect for the families who lost loved ones on that tragic morning a year before RIT rescued me. And my individual triumph over cancer is overshadowed by sorrow for the families who will suffer so long as profit takes precedence over people."

Are we really saving lives with all the wild spending on domestic-security programs and research into arcane military technologies, many of which may never see the light of day on a battlefield? No one can say. Yet, it's far more certain that the money we're NOT spending, as a nation, on delivering health-care technologies we've already developed and tested to sick people who truly need them is causing more deaths than any terrorist attack ever did.

On 9/11, let us honor the memory of those who have died, and the pain of those who miss their loved ones still. Yet, let us also redouble our efforts at bringing life and health to those who can still be saved.

September 9, 2010 - Defensive Medicine

2010-09-09T10:37:00.016-04:00

The headline reads, "Cost of Medical Malpractice Tops $55 Billion a Year in U.S." But it's misleading.

It's not the cost of malpractice that's the problem. It's the cost of the medical world's hyper-defensiveness in trying to stave off lawsuits.

The troubling figure, according to a recent, comprehensive study described in the article, is: 2.4.

That's 2.4 per cent of annual healthcare spending that's related to malpractice, including medical practitioners defending themselves against potential lawsuits.

Think of it - you write a check to your doctor for a $35 copay. No matter how expert your doctor is, no matter how meticulous he or she may be about leaving no medical stone unturned in diagnosis or treatment, 84 cents of what you're paying that day goes to cover the cost of other doctors who aren't so good at what they do.

Multiply that by every check written to every doctor and hospital around the country, and we're talking some really big money.

It's not so much the bad doctors out there who are the problem. Their numbers are very small. It's our fear of them that's the problem. It's a fear that leads even the best doctors to shell out big bucks for malpractice insurance, and that causes us to pay big bucks for marginally necessary tests.

They call it "defensive medicine," and it's costly indeed.

I hope the medical reform now working its way through our government includes some measures to reduce the adverse impact of this largely unreasoned fear.

It's a lot of money. It's not the whole answer to runaway medical costs in this country, by any means, but it's significant.

September 6, 2010 - His Music Lives On

2010-09-06T19:55:00.006-04:00

In some earlier posts, I've written about a musician, David M. Bailey, who's been an inspiration to me. David's a brain cancer survivor who, after undergoing treatment the first time, reinvented his life as a singer-songwriter. Except for the times when he's been undergoing further treatment, he's been traveling the country, sharing his musical message of faith, hope and love in the midst of adversity.

Today, I received this e-mail, sent out to those on David's mailing list, presumably by a friend or relative:

"David was moved to hospice on Friday, September 3, following nearly a week in the hospital. He has been surrounded by family, friends and loving caregivers and has been pretty comfortable.

There’s a day to be filled with music
and a day for all melody to cease
there’s a day to arm yourself for battle
and a day to calm your heart for peace"

dmb 1996

Back in the 1990s, they told David his glioblastoma brain tumor was supposed to have killed him in 6 months. He beat the odds, obviously, by a considerable amount of time. Now that it appears his final days are upon him, let's remember him in prayer, asking God for comfort and expressing gratitude for his remarkable witness of faith.

I regret that I never got to hear David perform live. I do cherish those of his CDs I own, though, and I know many others do, too.

There may be a day for "all melody to cease," but it will only be for the briefest time. David's music will live on.

"Well done, good and faithful servant."

August 31, 2010 - Creativity and Cancer Survivorship

2010-08-31T18:15:00.011-04:00

Today I run across this little gem, an edited-down version of a talk by Monty Python member John Cleese on the subject of creativity:

Cleese may sound like an odd choice, at first, to give this sort of talk, but in fact - alongside the brilliant loopiness of his television and film projects - he’s long had interests in being a serious academic. For a while he was Rector of the University of St. Andrews, where I did my Ph.D. (alas, just before my time there, so I never met him). He transformed the Rectorship - until then, a largely honorific, student-chosen position - into one that engaged with the University administration on a number of issues of importance to students.

The advice Cleese gives here is down-to-earth and practical: especially what he says about the importance of “sleeping on” a problem, and also of constructing boundaries of space and time for regular, serious reflection.

Running his remarks through my theological filters, I’m struck by how many times he dances right up to the line of saying something spiritual, but never quite steps over it. (No surprise there, because he doesn't believe in God.) For example, when he attributes creative breakthroughs to the work of “the unconscious,” he could have said “the Holy Spirit” - but doesn’t. When he’s talking about the need to carve out time for focused pondering, he could have said “quiet time for prayer and contemplation” - but doesn’t. Certain parts of the Christian spiritual tradition, such as monasticism, insist on a daily schedule (the liturgical hours) that’s meant to nurture precisely the sort of creative engagement Cleese is calling for, and have produced some wonderfully creative people (ranging from Thomas Merton to Dan Berrigan to Sister Wendy of the art-appreciation videos). We Protestants may be a bit behind the curve on that one, but even we have traditions of spiritual practices that foster creativity and holy insight.

So, what does all this have to do with cancer survivorship? Cleese doesn't mention any connection, but I was led to reflect on something many of us survivors have experienced: how the enforced down-time of a chemotherapy regimen crashed into our otherwise busy, over-committed lives and forced us to spend time reflecting on things we’d otherwise never have thought about (or perhaps not until some long-postponed retirement - and maybe not even then, judging from what I’ve heard from some retired people who report being busier now than when they were working).

It was during the enforced down-time of my chemotherapy, for example, that this blog was born. Since having that experience, I haven’t even needed to try to schedule time for creative reflection. I’ve simply done it (at times to the detriment of some of my more routine obligations, but what’s a credit-card late fee or two, if you’re staying more spiritually grounded as a result of obsessing less over the small stuff?).

Whatever stage of the survivorship journey we’re in - whether in treatment, in remission, in relapse, or in that blessed land some are bold to call “cancer-free” - it helps to let go of the urgent worries from time to time and put them to rest for a while, even if only for the few hours of a good night’s sleep (if that’s possible, health-wise). It also helps to set up those boundaries Cleese is talking about, so we can grab a little time for ourselves, away from the frenetic rounds travel to one medical establishment to another, and trying to respond to some of the demands of our normal lives when we’re not doing that.

Stephen Covey, in a memorable illustration I’ve referred to earlier in this blog, called it “sharpening the saw.” If you don’t stop your ceaseless sawing - back and forth, back and forth - from time to time, and pause to sharpen the saw-blade, you’re doomed to steadily decreasing effectiveness.

So, let’s hear it for self-care, on the cancer-survivorship journey! A major part of self-care is refreshing ourselves at those creative wells, where our spirit is free to engage with the Spirit of the Lord.

August 27, 2010: Cancer-Fighting's New Cocktail Party

2010-08-27T13:23:00.004-04:00

An article in Business Week, "Cocktails Are Next For Cancer-Drug Makers," highlights what its author calls a new development in cancer treatment. Comparing newly-developed cancer drug combinations to the drug cocktails that have been successful in treating HIV/AIDS, the author says:

"For more than a decade, cancer researchers have been crafting drugs to disrupt the precise cellular processes that fuel cancer, creating a $51 billion market in 2009. So far, the survival benefits have been measured in months, not years. That's because cancer, like the virus that causes AIDS, evolves rapidly to evade a single treatment. Rather than mixing and matching approved drugs, researchers are developing new, targeted combinations that work in tandem to block cancer.

'We're looking to see a radical change in terms of stopping the disease in its tracks,' says Tal Zaks, head of global oncology drug development at Sanofi in Paris. 'The return on investment here is not going to be just evolutionary; it has the potential to be revolutionary.'"

I don't get it. What's so new about chemo cocktails? I got R-CHOP (Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisone) five years ago. Isn't that a targeted drug cocktail?

R-CHOP is concocted of three chemo agents and a steroid, linked up with Rituximab, a monoclonal antibody that does the targeting.

How is this different from what the Business Week article is talking about? Can anyone enlighten me?

August 23, 2010 – What the Biograph Knows

2010-08-23T23:05:00.022-04:00

Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.

A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.

The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.

Here’s what I recall of the experience...

I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.

That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.

Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”

The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.

Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.

It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.

That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?

I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)

Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.

I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.

The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”

“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”

Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)

“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”

“Then how do I know it’s you?”

Typical Marx Brothers lunacy.

Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?

The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.

Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”

Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.

There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:

“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”
[The Merchant of Venice, Act 3, Scene 1]

One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.

We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?

August 16, 2010 - The Big C

2010-08-17T00:53:00.008-04:00

This evening, I take a look at Showtime’s new “dramedy” on cancer – The Big C, starring Laura Linney. We don’t have Showtime on our cable contract, but I happen to notice that the full first episode is available as a preview on Showtime’s website.

I presume the 30-minute video I saw was the whole episode. There was a little disclaimer about it having been edited for online viewing, but I take that to mean that the curse words were muted (which they were).

Laura plays Cathy, a Minneapolis high-school teacher who’s just learned she’s got stage 4 melanoma. She declines treatment, and decides not to tell anyone, not even her family. The first episode is all about her bouncing from one wildly inappropriate, self-destructive behavior to another: impulsively deciding to have a swimming pool dug in her front yard, without getting the necessary permits; treating an obnoxious summer-school student with a savage cruelty the writers likely intend to be funny, but isn’t; telling off the cranky, reclusive old lady who lives across the street; overindulging in goopy desserts, liquor and even a cigarette she confiscated from a student.

Yes, I know diagnosis is a terrifying, world-shaking time – and everyone deserves to be cut a little slack in the midst of it – but no one is that crazy.

Linney does a spectacular role of acting the part, but it’s the script that’s over the top. This is a shame, because we cancer survivors could really use an actor of her caliber telling our story. She gets it right on the gut level, in a way that makes viewers identify with her, but she’s shackled by that unrealistic script.

The scene showing her interaction with her doctor is particularly problematic. She tells someone she’s going off to the dermatologist, but this guy is doing more with cancer treatment than any dermatologist I’ve ever heard of. I suppose, in retrospect, he’s really meant to be her oncologist, and the dermatologist story is a little cover-up on her part, but the script never reveals that.

Even as an oncologist, though, he’s unrealistic. There’s a flashback showing Cathy in his office, viewing her tumor on an x-ray film. It’s clearly an x-ray, not a CT or PET Scan.

He also admits to Cathy that she's his "first." First what? Cancer patient? (Not likely, given his years of specialist training.) His first terminal patient? (Again, not likely he missed that experience, if he's been an oncology resident). His first patient to decline all treatment from the get-go? (Maybe a little less unlikely, but not much.) His first melanoma patient? (If that's true, Cathy would be well advised to run as fast as she can, putting as much distance between herself and this rookie as possible.)

So, the writer and director would have us believe that a sensitive and intelligent professional in her late 40s or early 50s, with everything to live for, is going to chuck it all, declining treatment and keeping her diagnosis secret from everyone in her life, based on something she saw on an x-ray film in her doctor’s office? No follow-up tests. No second opinion. Not even a careful weighing of the treatment options, before coming to that momentous decision.

“I’ve always loved my hair,” Cathy tells her doctor, explaining why she’s ignoring his medical advice and declining treatment. “I cry every time I get it cut.”

Now, maybe that’s a feeble attempt at a joke on her part, but if that’s not the case (and there’s no clear indication it is), then the Minneapolis Board of Education is saddled with an astoundingly airheaded high-school history teacher.

The scene is both medically and psychologically inaccurate, and that’s a real missed opportunity – especially since what happens in her doctor’s office is the premise on which the whole series is based.

What, Showtime was too stingy to spring for a decent medical advisor?

Washington Post reviewer Hank Stuever makes a similar point:

“I’ve known people whose loved ones avoided treatment and kept cancer a secret until it was too late. Cathy’s decision is ‘The Big C’s’ most difficult hurdle – a wildly selfish and passive-aggressive act that is difficult to find funny. It also doesn’t seem believable in Cathy’s case – she just seems too smart and articulate to deliberately withhold something like this, unless she’s just being mean. Whatever her reasons, Cathy’s secret cancer does provide ‘The Big C’ a doorway to a fascinating story arc, in which the people in her life come across as unfailingly more selfish than she’s attempting to be.”

While this first episode does a not-so-good job of portraying the personal and medical aspects of a newly-diagnosed cancer patient’s life, it does depict one thing accurately: our society’s fear of cancer. The series, of course, is really about death, and what it means to go on living in its shadow with strength and dignity. It’s significant that the disease chosen as the vehicle for this philosophical and psychological exploration is cancer. The problem is that not all cancers are alike, and not even a metastasized, stage 4 melanoma is a reason to decide to forgo all treatment, especially for a newly-diagnosed patient.

Those quibbles aside, I do recommend the series, based on what I saw. I’d watch it myself if I had Showtime. Guess I’ll have to rent the subsequent episodes on DVD, once they’re available.

What To Say When a Friend Has Cancer

2010-08-10T11:52:00.008-04:00

Here's an insightful article, shared by Betsy de Parry on the Patients Against Lymphoma group on Facebook. "Vital Tips to Keep Hope Alive Through Cancer" is a blog post by Lori Hope, a lung cancer survivor, on the CarePages website.

Lori's main focus is on what not to say to friends who have cancer. It really is helpful to think ahead of time about how to use our words in helpful, healing ways.

Sometimes the thoughts that first come to mind aren't all that therapeutic for friends with cancer. They may even make life more difficult. Such comments say more about ourselves, and our anxieties, than about the other's needs.

Here's a brief, digested form of Lori's pointers. For the full list, click on the link to the full article.)

• Don’t inadvertently blame the victims by hinting that they may not be thinking positively.

• Don’t blame the victims by asking about possible risky behaviors they may previously have engaged in, like smoking. This is an absolute no-no. (You may be wondering about it, but don't ask.)

• Don't share stories about people you've known who've had the same form of cancer, but didn't survive (Lori says she needs to hear at least five success stories to counter one such horror story).

To that one, I'd add a codicil: Don't share stories about people who had a completely different kind of cancer, thinking it will somehow be encouraging. The word "cancer" covers a vast family of diseases, making it very hard to generalize from one type to another.

So much for what not to say. Now, here are a few positive suggestions:

• For friends who may find it hard to be continually confronted by discouraging statistics, offer to help with research - but don't forward articles without first reading them through completely.

• Try not to be gloomy. Humor is therapeutic, so help your cancer-survivor friends find things to laugh about!

• Every once in a while, remind your friends you’ll be there for them, no matter what. Some survivors have the experience of losing longtime friends who simply drift away, because they can't handle the situation emotionally. It's always good to be reminded of friends who are still there for us.

August 3, 2010 - Clinging to the Tail of Possibility

2010-08-03T16:06:00.010-04:00

On vacation in the Adirondacks, I read a remarkable article from the August 2 New Yorker magazine. I was tipped to the article by my brother, Jim – though I later learned from Claire that members of her hospice team have been passing it amongst themselves, causing lively discussion in their weekly staff meeting.

I think “Letting Go: What should medicine do when it can’t save your life,” by Atul Gawande, may set off at least as much debate as his June 1, 2009 article, “The Cost Conundrum: What a Texas town can teach us about health care.” (which I discussed in a July 20, 2009 blog entry, “Where Not to Get Sick.”)

Gawande is a general surgeon who practices at Boston’s Brigham and Women’s Hospital, and who teaches at Harvard Medical School. He’s operated on a lot of cancer patients. Some benefitted mightily from his expertise, and others’ last days would likely have been more tolerable without the invasive procedures. Yet, hindsight is always 20/02, and ahead of time it’s always a tough call.

It’s his physician’s perspective that leads Dr. Gawande to question the lack of agreed-upon procedures for end-of-life decision-making in America. For a country with some of the most advanced medical care in the world, our practices in this area are remarkably haphazard.

Gawande points out that the financial costs of successful cancer treatment can typically be graphed as a bell curve: there’s a steep climb from the time of diagnosis to a sort of plateau, as very expensive scans and treatments are deployed. Then, there’s a drop-off in costs as the patient recovers. In the case of patients whose treatment is unsuccessful, the frequent result is half a bell curve. We throw some very big money at solving problems that are – statistically speaking – unlikely to be solved, sending the line of the graph soaring upwards. Because it’s a human life at stake, doctors typically follow the lead of patients and their families, ordering such last-ditch treatments if that’s what they want. In many such cases, the patient dies anyway, often after many days, or even weeks, of intensive care. If the ICU stay is long, those days can end up costing as much as – sometimes even more than – the cancer treatment itself.

These are agonizingly difficult decisions, some of the toughest in medicine. When to pursue extraordinary, experimental treatment? When to throw in the towel and admit that maintaining a reasonable quality of life for the patient whose health is in a tailspin is more important than the increasingly quixotic search for a cure?

Gawande remarks that nearly all categories of dying patients and their families – with one exception – are ill-prepared to wrestle with such complex, emotionally fraught decisions. When, as too often happens, everyone’s energies are single-mindedly fixed on the search for a cure, doctors fail to raise the what-if question of death at all. It seems to them premature. Yet, when that likelihood suddenly looms large, and quick decisions have to be made about such interventions as feeding tubes and ventilators, patients and families scramble to wrap their minds around the new state of affairs. Unable to achieve unanimity, a great many families fall back to the default position, which is to press on relentlessly in search of a cure – even though the doctors may know, full well, that chances of extending such patients’ lives by more than a few weeks are slim.

Granted – as Claire reminds me, based on her hospice ministry experience – there are some cultural and ethnic traditions that inform this process. Orthodox Jews, for example, typically make decisions within a moral framework that nearly always opts for treatment, no matter what the chances of success. African-Americans and Hispanics, bearing cultural memories of parents and grandparents to whom the system too often denied advanced care, are more likely than others to press for it, even against medical advice.

Referring to science writer Stephen Jay Gould’s oft-quoted 1985 essay, “The Median Isn’t the Message” – in which Gould tells the story of how, upon learning he had mesothelioma, he decided to take his place among the tiny percentage of patients who survive, and did – Gawande speaks of the “tail” of the statistical curve. That’s the narrow portion that stretches a good distance into the future, and includes the fortunate few patients who manage to beat the odds and survive a deadly cancer. It’s good to remember, when faced with such stories, that the statistical median is just that – a median. Always, there are some who do better than clinical expectations, others worse. An awful lot of people, though, are trying to ride the tail of statistical probability – far more than will end up actually being on it. Gawande writes:

“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The problem is that we’ve built our medical system and our culture around the long tail. We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

I mentioned above that Gawande identifies one category of patients and their families who are better prepared for end-of-life decision-making. He’s talking about those who have received hospice services. Alone among the specialties of modern medicine, the hospice movement is not afraid to face death head-on and talk about it with patients – well before the anxious moment in the little family waiting room just off the ICU, when a doctor (or, just as likely, a critical-care nurse) sits down on the vinyl-covered furniture with the family and informs them a decision needs to be made about discontinuing life-support.

Patients who have signed on for hospice care have already decided they’re not going to cling to the slim tail of possibility any longer. They’re going to strive for the best quality of life they can construct in the here-and-now, placing their hope somewhere other than joining the tiny percentage who defy medical expectations.

I can’t begin to recall the number of grieving family members I’ve spoken with who told me they wished their loved one had gone on hospice earlier. Claire confirms for me, from her experience working with bereaved family members, that this is a nearly-universal comment. Curiously, the vast majority of hospice patients live no longer than a few days. That’s not because hospice care is somehow bad for them – quite the opposite. It’s because, by the time most patients make this decision, they’re already so far gone that hospice functions as little more than a transfer-station between the hospital and the funeral home.

It’s not meant to be that way. The hospice ideal is for weeks or even months of active, but mostly palliative, treatment. The hope is that the hospice experience will provide a gracious space for patients and their families to work through the full range of issues – medical, emotional, spiritual – they need to deal with at the end of life. Surprising as it may seem, there are even some patients who go on hospice for a time, then go off it – their improvement has been such that the “six months or less to live” criterion of hospice admission no longer applies to them.

So, signing up for hospice care is not giving up, as some fear. Far from it.

The key to a higher quality of life for the dying, Gawande points out, is communication. One of the things hospice team members do exceptionally well is to encourage patients and their families to share their thoughts and feelings about dying, then to listen attentively and respectfully to what they say. Next, they help them think through what goals they have for the rest of their lives, and do whatever they can to help them attain them. “You don’t ask, ‘What do you want when you are dying?’” explains one expert. “You ask, ‘If time becomes short, what is most important to you?’” Gawande observes:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and to say what they have seen, who will help people to prepare for what is to come – and to escape a warehoused oblivion that few really want.”

The asking of such questions was meant to be a central part of the new health-care legislation recently passed by Congress, but politics blocked it. The Tea Party mob ignorantly slapped the label “death panels”on the funding for these vital conversations, then pressured Congressional leaders to excise it from the bill – which they did, so as not to lose the bigger battle. This is a terrible miscarriage of justice for the dying: the sacrifice of a proven care approach that offered real promise for enhanced quality of life.

When the only goal worth talking about is to beat the disease, Gawande concludes – no matter what that may mean in terms of unproven, experimental treatments – the statistical outcome in nearly every case is going to be disastrous. Which general would you rather have leading the troops into battle? George Armstrong Custer or Robert E. Lee?

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when you couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

This article is a good read, for anyone whose life has been touched by cancer – either their own or that of a loved one.

July 13, 2010 – Bendamustine Rising

2010-07-13T15:22:00.008-04:00

Thanks to Betsy DeParry of the Patients- Against-Lymphoma group on Facebook, for posting excerpts from an article about Bendamustine in the treatment of indolent NHL.

Bendamustine (trade names Treanda, Ribomustin) is a chemotherapy agent that’s been around for decades. It was developed in East Germany during the Cold War, which is perhaps why it was slow to catch on in the U.S. and Western Europe. It’s receiving a lot of attention these days as a treatment option for NHL, either in conjunction with Rituxan or on its own.

The full article is found in the issue of the American Journal of Health-System Pharmacy (2010; 67: 713-723). Authors are Anjana Elefante, Pharm.D., B.Sc.Phm., Clinical Pharmacist, Department of Pharmacy; and Myron S. Czuczman, M.D., Chief, Lymphoma/Myeloma Service, Department of Medicine, Roswell Park Cancer Institute, Buffalo, NY.

Here are some excerpts from Betsy’s excerpts:

“Bendamustine is an alkylating agent that has a unique, multifaceted mechanism of action. Compared with other alkylators, bendamustine produces more-extensive and long-lasting DNA damage. Bendamustine also inhibits cell-cycle checkpoints, leading to mitotic catastrophe and apoptosis.”

Sounds pretty dire, eh? Well, the “DNA damage... mitotic catastrophe and apoptosis” is actually referring to cancer cells, so that’s not such a bad thing.

“Bendamustine is approved for the treatment of CLL and for indolent B-cell NHL that has progressed during or within 6 months of treatment with rituximab or a rituximab-based regimen. In Phase II and III trials in patients with indolent NHL and CLL, bendamustine has demonstrated response rates of 67–84% as a single agent and median durations of response of 7–21 months. Additional clinical trials are examining bendamustine as a single agent and in combination therapy for the treatment of hematologic malignancies and solid tumors. Adverse events associated with bendamustine are typically mild to moderate and can usually be managed with supportive care.”

Sounds pretty encouraging.

“NHL is the most common hematologic cancer and the sixth most common cancer in the United States, with an estimated 65,980 new cases and 19,500 deaths occurring in 2009. The histological subtypes of NHL fall into two major classes: indolent (slow growing) and aggressive (fast growing). Lymphomas with indolent histologies include B-cell follicular lymphoma, marginal zone lymphoma, small lymphocytic lymphoma, and cutaneous T-cell lymphoma. Lymphomas with aggressive histologies include diffuse large B-cell lymphoma, lymphoblastic lymphoma, and Burkitt lymphoma. Mantle cell lymphoma is classified as an aggressive lymphoma but possesses characteristics of both indolent and aggressive disease.

Treatment of indolent NHL depends on the histology and stage of the disease. Because indolent NHL is often asymptomatic in early stages, it is generally advanced (stage III or IV) at the time of detection. Treatment for indolent NHL typically involves a combination of chemotherapy and immunotherapy, such as cyclophosphamide, doxorubicin, vincristine, and prednisone (CHOP) plus rituximab. Alternatively, other chemotherapy regimens may be used in combination with rituximab, including cyclophosphamide, vincristine, and prednisone and fludarabine-based regimens. Radiation and bone marrow or stem cell transplantation are treatment options in selected patients.

Indolent NHL is generally incurable. Patients typically follow a course of remission and relapse requiring multiple rounds of therapy with rituximab, chemotherapy, or both. Eventually, most patients become refractory to chemotherapeutic agents, rituximab, or both.[20] Therefore, new treatments are needed to prolong the duration of remission and overall survival for patients with relapsed and refractory indolent NHL.

Bendamustine is useful in that it shows little cross-reactivity with common first-line indolent NHL therapies. It is effective in patients refractory to rituximab, chemotherapy, or both...”

What about side effects?

“Bendamustine is generally well tolerated. The most common serious (grade 3 or 4) adverse events are hematologic in nature. Gastrointestinal events are also commonly observed but are usually mild to moderate in severity. Adverse events can often be managed with supportive therapies or dosage modifications.”

Translation: like other chemotherapy agents, it can throw your blood counts out of whack and it can make you vomit. Yet, they say these side effects can be pretty much kept under control with other drugs.

In the oncologist’s lexicon, “well tolerated” doesn’t mean you feel good. It means the doctors don’t usually have to cancel the chemotherapy because it’s making you so sick you can’t stand it.

In any event, this is another bit of encouraging news for me, for whenever it should happen that “watch and wait” ends and “go and do something” begins.

It’s good to have more than one arrow in the quiver, to be sure.

Necrology

2010-07-05T08:13:00.004-04:00

This week I'm attending the Presbyterian Church's General Assembly in Minneapolis. I'm blogging about it on my Monnmouth Presbytery Clerks' Corner blog.

Yesterday was the opening worship service, with several thousand people in attendance at the Minneapolis Convention Center. At one point in the service, it was announced that the Necrology Report would be presented, in the form of a list of names projected on the large screens over our heads.

"Necrology" is an odd word, but to those who frequent Presbyterian official meetings above the local level, it means a report of recent deaths. The General Assembly's Necrology Report is a list of ministers who have died during the previous two years, since the Assembly last met.

Flashing the names up on the screen was a creative way of presenting this information, without having to go through the tedious exercise of reading the list aloud. As we listened to some wonderful music, I scanned the names as each page was put up there, to see if there were any I recognized - any honored members of the older generation.

Bam! There was a name I recognized, but not from the older generation. It was Karen, a seminary classmate with whom I had worked side-by-side for a couple of years after we graduated, when we were both associate pastors. She died in a freakish accident: a burst blood clot in her lung, while she was on a high-altitude hiking trip. By the time the mountain-rescue team got her back down the mountain, it was too late.

Then there was Carter's name. I had never met her in person, but she and I were on the writing team for The Immediate Word, an internet sermon resource for preachers. Every week, we would speak via conference call, as the team planned the next installment. She had died suddenly of a massive heart attack.

In my mid-50s, I'm at the stage of life when I can expect to hear about this sort of thing more frequently - members of my generation who are dying.

I was very much aware of the fact that, with my cancer experience, I could very well have been numbered in that company. What would others have thought as they saw my name flashed on the screen, I wondered?

We cancer survivors have to deal with ever-present reminders of our mortality. To us, they take on a meaning that I suspect is very different than those who have always enjoyed good health.

June 7, 2010 - Is Google Making Us Ignore God?

2010-06-07T22:57:00.005-04:00

Came across a thought-provoking article today by Ernesto Tinajero on Sojourners Magazine’s “God’s Politics” blog. It's called "Is Google Making Us Ignore God?"

Here’s an excerpt:

“God calls on us to meditate on God and God’s word. However, does the fast intake of information from TV, film, and especially the Internet make us less likely to experience God? According to new research, electronic gadgets actually change how we think and focus. Nicholas Carr famously asked ‘Is Google Making Us Stupid?’ Will it also make us ignore God?...

The theological perspective is that this busyness of the business of modern life draws us into the world of Martha and away from sitting at the feet of Jesus. We are being called to distraction, and the quiet, still voice of God goes unnoticed – unnoticed in the flood of ever new links to follow, unnoticed in the hectic pace of modern life, unnoticed in the flood of events, information, and distractions. Through it all, God continues to call us to sweet voice of prayer. Yes, the call I am heeding –returning to simplicity and healthier life – may seem too simple to make a difference. Yet, does it make it any less true?”

I wonder what the implications of this 24/7 deluge of distractions are for our immune system, and for the cancers like lymphoma that sometimes beset it?

Judaeo-Christian religion has a time-honored solution: it’s known as sabbath. Periodically creating for ourselves islands of spiritual peace – places and times for encountering the divine – ought to be central to any long-term program of recovery.