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.