January 8, 2012 – Lessons from the Cancer Wilderness

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

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

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

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

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

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

"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

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

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

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

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

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

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

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

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

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

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

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.