Friday, December 30, 2011

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.

Friday, December 23, 2011

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.

Monday, December 12, 2011

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.

Wednesday, November 09, 2011

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!

Monday, November 07, 2011

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.

Thursday, November 03, 2011

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.

Wednesday, November 02, 2011

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.

Tuesday, November 01, 2011

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.

Thursday, October 06, 2011

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!

Monday, October 03, 2011

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!

Saturday, October 01, 2011

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.

Wednesday, September 28, 2011

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.

Tuesday, September 27, 2011

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.

Tuesday, September 20, 2011

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.

Thursday, August 11, 2011

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!

Sunday, August 07, 2011

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.

Monday, July 11, 2011

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.

Thursday, July 07, 2011

July 7, 2011 – Unbending Our Thoughts

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.

Friday, July 01, 2011

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

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.

Monday, June 27, 2011

June 27, 2011 – Hope Will Find You

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.

Saturday, June 25, 2011

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

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...