February 27, 2009 - Something There, All Right

There’s something there, all right.

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

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

Which side is it on?

That, I don’t know.

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

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

“How big do you figure it is?

“A little less than a centimeter.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

February 19, 2009 - Wisdom to Survive

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

February 11, 2009 - Time: On My Side?

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

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

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

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

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

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

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

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

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

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

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

February 7, 2009 - Dumbth

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

February 1, 2009 - Authority

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

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

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

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

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

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

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

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

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

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

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

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

(Sorry, I couldn’t resist.)

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

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

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