March 22, 2011 – Another Cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March 11, 2011 - Needle to the Neck

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

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

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

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

Well, isn’t that reassuring?

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

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

A remarkably un-cagey response, for a doctor.

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

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

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

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

Results are supposed to be here by Tuesday

More waiting. But, what else is new?

February 19, 2011 – Incidentaloma

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

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

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

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

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

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

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

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

August 23, 2010 – What the Biograph Knows

Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.

A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.

The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.

Here’s what I recall of the experience...

I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.

That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.

Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”

The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.

Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.

It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.

That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?

I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)

Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.

I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.

The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”

“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”

Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)

“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”

“Then how do I know it’s you?”

Typical Marx Brothers lunacy.

Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?

The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.

Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”

Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.

There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:

“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”
[The Merchant of Venice, Act 3, Scene 1]

One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.

We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?

January 6, 2010 - Watching and Waiting, a Little Slower

It’s been a busy holiday season, so I haven’t had much time for keeping up the ol’ blog. Today, though, I saw Dr. Lerner, after having had a CT scan several weeks ago, so there’s a little something to report.

Earlier, I’d received news by phone from the doctor’s office that the scan result was good – no appreciable increase in size. Today, Dr. Lerner confirmed that, and said the remains of the abdominal mass had actually gotten a little smaller – although he was quick to add that this is probably a testing anomaly, the result of the scan segment being “cut through” a narrower part of the tumor.

He did say that, since things have been stable for so long, I could probably wait a little longer between scans next time. So, he’s asked me to come back and see him three months from now. If all is well, and I’m not reporting any problems, he’ll then order a scan to take place just before the next 3-month appointment. In other words, we’ll be shifting to having a scan every other three-month appointment, rather than every one.

I take this as good news, of course. My disease is “stable.” I’m all for that.

I was standing in line afterwards, waiting at the window to schedule my next appointment. Under my arm was my patient folder – or, at least, the most recent one. It was pretty thick: 3 or 4 inches.

Looking around the office, I realized all the other files I saw weren’t nearly as thick. I’m getting to be a real veteran of this stuff. Who would have thought it, four years ago, when I was just beginning my chemotherapy?

A lot has happened in that time. There’s been a lot that hasn’t happened, as well – things I feared might have.

A happy, healthy 2010 to all of you!

December 15, 2009 - Expectancy

This time of year, we Christians find ourselves – if we can stop our frenetic holiday preparations for a moment and be still – in the season of expectant waiting known as Advent.

It’s a tough season for most folks to wrap their minds around. Anyone who pays attention to the liturgical year feels oddly suspended between the now and the not-yet. This isn’t helped by the fact that the recommended biblical texts for Advent are of two distinct kinds. On the one hand, there are apocalyptic passages that warn of the final judgment and the return of Christ to judge the earth. On the other, we’re handed kinder, gentler stories like the Annunciation: the angel Gabriel’s visit to Mary, announcing Jesus’ impending birth.

It can be tough, during Advent, to figure out what, exactly, we’re meant to be waiting for. Are we waiting for Christ to come crashing in and judge this mad, mixed-up world for what it is? Or, are we imaginatively placing ourselves into the Christmas story, waiting for him to be born in Bethlehem again in our hearts and minds?

I have a new appreciation for the ambiguities of waiting, ever since entering my extended, watch-and-wait treatment mode. Of course, unlike the waiting associated with Advent, the thing I’m waiting for is not good. I’d just as soon have my lymphoma remain in couch-potato mode as long as possible. Yet, I do also live my life attuned to subtle signs that could develop.

Every three months or so, I go for another scan: a moistened finger held up to test the wind. Today’s the day: another CT scan at Ocean Medical Center.

Unlike the classic prayer of Christians, “Even so, Lord Jesus, quickly come,” I’m very happy to keep on waiting.

August 25, 2009 - Be Your Own Advocate

Here’s a rather shocking statistic from a recent study: 25% of abnormal medical test results never get reported to the patient.

Part of this is due to the negligence of certain doctors and their staffs – although, in some cases, it has to do with the national shortage of primary-care physicians. Often, it’s the primary-care physician who wrangles the test results and reports them to the patient. If someone’s getting their basic care from a doc-in-the-box or an emergency room, the lab or specialist may not have a clear idea of the chain of command. (In case you don’t know, a “doc-in-the-box” is a nickname for a walk-in clinic, at least here in New Jersey.)

Whatever the reason, this number is way too high.

Actually, something like that happened to me with my colonoscopy several years ago (results were normal in that case). I didn’t hear from the gastroenterologist, and I simply told myself, "I guess no news is good news." On a subsequent visit to Dr. Cheli (my primary-care doc) a few months later, I asked him if he’d heard the results of my 50th-birthday colonoscopy. He hadn’t, and had one of his nurses call back, then and there, to the office of the gastro guy. Then, I overheard him talking on the phone to one of that doctor’s office staff, chewing them out for not sending the results to either of us. Good thing there was no abnormality – although his office evidently didn’t have a fail-safe procedure in place for checking back in the event of results that never came.

All of this just goes to show us patient types: in this crazy, dysfunctional medical system, we’ve got to be our own advocates. If we don’t look out for our own interests, it’s very possible no one else will.

A word to the wise...

So, what about the rest of you? Have any of you had difficulties with test results not getting reported to either you or your primary-care doc? Sound off in a comment, below...

June 26, 2009 - High Anxiety Threshold?

This afternoon I have a routine office visit with Dr. Lerner, my oncologist. He’s received a report from Dr. Sher, the endocrinologist I met with a week or so ago (I didn’t blog about that visit at the time).

Those who’ve been following this blog for a few months may recall that, back on Valentine’s Day, I had a PET/CT scan that revealed a possible nodule on my thyroid gland. A subsequent ultrasound confirmed that, yes, there was something abnormal growing out of the left side of my thyroid.

Dr. Lerner told me he didn’t think it was anything significant – most of these growths are benign, he explained, and this one was pretty small, at that – but he thought it was worth seeing an endocrinologist to get it checked out.

Through a series of scheduling misadventures, it was only a couple of weeks ago that I finally got in to see the endocrinologist. Dr. Lerner had given me the name of a Dr. Asnani, saying he wanted me to see that particular specialist, and none other – although he emphasized it wasn’t urgent, and I could meet with him any time in the next several months. Well, Dr. Asnani’s office staff told me he was in India on an extended visit, and they weren’t even making appointments for him until after his return. I called back over a month later, as they had instructed, and it turned out they had no free appointment for about another month and a half. The long and the short of it was that I finally got into his waiting room on June 16th – just over four months after the nodule first appeared on the CT scan!

Come to find out, Dr. Asnani wasn’t available that day, as he was making hospital rounds. I’d be seen by a resident, Dr. Lee, instead, and then by Dr. Asnani’s partner, Dr. Sher. Dr. Lee was actually the most helpful. She spent a lot of time with me, explained everything, and was very responsive to all my questions. She carefully probed my thyroid with her fingers, taking great pains to see if she could feel the nodule. Then, I saw Dr. Sher for all of about 2 minutes – no examination, just a reiteration of what Dr. Lee had already told me.

When I explain all this to Dr. Lerner today he says, that’s fine, Dr. Sher’s name would have been one he would have recommended – even over Dr. Asnani – but the last several times he’d tried to refer patients to Dr. Sher, they were turned away with the explanation that he wasn’t accepting any new patients! (The ways of medical scheduling are exceeding strange.)

So, what did Drs. Lee and Sher tell me about my thyroid nodule? That it’s very small (0.8 centimeters), too small to biopsy. They recommended I have another thyroid ultrasound in 6 months, and if it’s bigger than a centimeter, it may be wise to have it biopsied. Even so, they reassured me, I shouldn’t worry about it – only a small percentage of such nodules are malignant, so it’s just a precaution.

Well, I went away from the endocrinology office thinking it’s probably a good thing I’m going through this thyroid stuff after having been through a lymphoma diagnosis, chemo and all the rest – I might have been a nervous wreck, otherwise. My anxiety threshold when it comes to things medical has certainly gotten higher!

Dr. Lerner hands me a script for my next PET/CT scan in early September: time to start the whole cycle again.

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 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.

October 1, 2008 - Stable Is Good

“Everything looks pretty stable.” That’s Dr. Lerner’s assessment of my recent PET and CT scan results, as we meet together for an examination this afternoon. He delivers the news in his best physician deadpan style, one I’ve grown used to over the course of our many consultations.

The doctor goes on to explain that the areas that were lighting up near my neck on my earlier PET scan are no longer lighting up on this recent one, and that there’s a small, new area lighting up on my lower back. “The problem with PET scans,” he quickly adds, “is that there are a lot of false positives – these areas are pretty small, so they could be nothing.”

They all look fine on the CT scan, he continues.

I ask about my residual abdominal mass that had measured 17% larger on my last CT scan – a measurement Dr. Lerner figured at the time could still be within the statistical margin of error (it seems the radiologists don’t start getting alarmed until such a mass shows 25% enlargement). It doesn’t look any bigger at all, on this most recent scan.

Round about this time the phone rings. Dr. Lerner apologizes for the interruption, then takes the call. It’s evidently from another doctor who wants to confer about a patient. The receptionist brings in a thick file, and Dr. Lerner spends 3 or 4 minutes sharing details similar to my own case – something about the growth rate of certain tumors, I can’t follow it all. After hanging up, he comments, “It’s nice to be able to tell someone good news for a change.”

“I guess my test results are good news, right?”

“Yes, they are,” he replies, “for your situation.”

It’s not exactly a ringing endorsement – and it’s delivered in that same deadpan style, friendly but not overly cheerful – but I’ll take it. What I think the doctor means by that last qualifier – “for your situation” – is that, with an indolent lymphoma no one looks for cure, only stability.

Stable is good. Guess I’ll watch and wait some more.

September 22, 2008 - Scanner Doubleheader

Today I go for a scanner doubleheader: a PET scan and a CT scan at Jersey Shore University Medical Center.

I’m using Jersey Shore this time (a Meridian Health hospital), rather than the for-profit Atlantic Medical Imaging (where I had my last PET scan, a PET/CT fusion) because my insurance situation has changed. Because Claire’s now working full-time for Meridian (as director of the Bereavement Program of Meridian Hospice), I’ve now got secondary medical insurance through QualCare (Meridian’s employee health-insurance provider). They reimburse at a higher rate for services performed at Meridian facilities, so it makes sense to switch providers.

I checked with Dr. Lerner about this first, of course. The message came back, through one of his office staff: if it would save me money, a PET scan at Jersey Shore, followed by a CT scan, would be fine.

I’m just as glad. I had a good experience at Atlantic Medical Imaging, but I’m aware of how much of a financial threat these physician-owned, freestanding diagnostic and surgical facilities are to hospitals. They skim off many of the most profitable portions of the hospitals’ trade, leaving them to handle less lucrative procedures – not to mention the charity-care patients who cannot pay. I went to Atlantic initially because they were the only facility in the area offering the PET/CT fusion scan, but since Dr. Lerner wants me to have a regular CT scan along with the PET scan anyway, it seemed like the right time to go back to patronizing the hospital.

Things go well, all in all. The PET scan technician tries and fails twice to get my IV line in properly, then has to call a nurse – but that’s a small matter. The PET scanner itself is located on the back of a tractor-trailer truck, that pulls up to a special access bay at the side of the hospital. The truck shuttles this expensive machine between several hospitals on a regular basis. Once you step aboard, though, it feels no different than any other room – a little smaller, that’s all.

It’s not pleasant to lie on my back, absolutely still, with arms extended over my head, for the 30 minutes or so the PET scan takes, but I get through it. Fortunately, the tech guides my hands to a mesh strap that some thoughtful designer included at back of the headrest. By hooking my thumbs through the strap, I’m able to take some of the pressure off my upper-arm muscles. Ah, the little things – they make such a difference. After the protracted PET scan, the CT scan is a piece of cake.

I’m not sure to what extent these scans are routine, for me. Last time I met with Dr. Lerner, he said he wanted me to go for another CT scan before our next 3-month appointment, but he was going to wait to decide about a PET scan until he’d seen the results of my detailed blood work. I guess there must have been something in those results that makes him want to err on the side of caution – though his office staff provided no details when they told me the doctor’s written instructions indicated a PET scan as well as a CT.

Maybe this is cause for concern, or maybe it’s not. I’ve been feeling a little anxious about it. I’ll find out for sure at my next appointment with him on October 1st – or maybe sooner, if I get a phone call reporting on my test results.

In the meantime, I’m in that medical-test limbo that’s so familiar to anyone who’s gone for a radiological scan: nobody can tell me anything until after the radiologist has examined the signs from the oracle.

(In case you're wondering about the picture to the right, it's the Oracle at Delphi - obscure mythological reference.)

August 8, 2008 - Watch and Wait Some More

Late this afternoon, I have an office visit with Dr. Lerner. It’s a follow-up to my July 1 CT scan. I already know the results, as I walk through the office door, because the doctor phoned me while I was on vacation to let me know the results look pretty good.

As it turns out, the hardest part of today’s office visit is the port flush. The nurse has a tough time getting the needle into my implanted port, and has to call in another nurse to give it a try. It seems the port has shifted a little, with its business end no longer facing upward, towards the skin. At least, that’s what the first nurse thinks, as she sticks the needle in a couple of times and feels it hitting something hard – probably the metal casing of the port, she tells me.

Nurse number two does a lot of manipulating of the port with her fingers, before she gives it a try. Something she does must be right, because the needle goes right in. I suppose she managed to turn the thing, somehow. She even manages to get a blood return out of the port for my blood test – something that hasn’t always worked for me in the past. She has to flush it twice with the heparin in order to get the blood to flow backwards through the port and into the plastic tubing, so she can drain a little off into a couple of test tubes.

Both nurses are apologetic about having to stick me multiple times with the needle. They couldn’t be nicer. At least they saved me from getting stuck in the arm for the blood test, they reassure me (which is what’s happened in the past when they couldn’t get the blood return to work).

It’s really no big deal, I tell them – and I mean it. One of the realities of being a blood-cancer patient is that, after a while, needle sticks become routine. Back when I was new at this, I used to cringe a little each time, preparing myself for the worst. Now, I just roll up my sleeve (or, in the case of a port flush, unbutton the top buttons of my shirt) and say bring it on.

I get a favorable report from Dr. Lerner. He explains that the radiologist’s estimate of 17% growth in my abdominal mass (which we’ve been assuming is residual scar tissue) may sound like a lot, but that amount is not statistically significant. It’s within the margin of error. Measuring these things is not an exact science, he tells me. The radiologists use a little measuring widget on their computer screens, and it all depends on where they choose to click the mouse to indicate the outer border of the structure being studied, before they drag the mouse to the opposite edge to make the measurement. The border’s not always that distinct, so there’s a bit of scientifically- informed guesswork involved.


Dr. Lerner says he’d like me to come back in 3 months, and have another CT scan or PET scan a couple of weeks before. Which one it will be this time, he can’t say just yet. He wants to wait for my detailed blood test results to come back from the lab. The instant CBC (complete blood count) report they handed me looks fine, but there are more detailed analyses the alchemists down at the blood lab have to perform, and these take time.

So far, so good. Another three months, another scan. Watch and wait some more.

May 28, 2008 - Slo-Mo Gets Even Slower

Today I see Dr. Lerner for my 3-month appointment. It’s the usual routine: CBC blood test (with instant results, thanks to his spiffy machine), and a physical exam (stethoscope, feeling my neck, armpits and groin for enlarged lymph nodes, then thumping on my abdomen).

The doctor asks me how I’ve been feeling. I tell him I continue to have no symptoms and am feeling fine. Everything looks good, he tells me, so he’s going to recommend I wait a little longer for my next CT scan. I won’t go in for that until the first week of July – just shy of 5 months since my last one.

Previously, my scan interval has been every 3 months – but, the last 2 scans have indicated no change in the size of my enlarged lymph nodes. This lymphoma has been out of remission for more than a year, but the biopsy has shown it to be of the indolent, couch-potato variety – so, Dr. Lerner doesn’t seem overly concerned.

Sometimes, in action movies, the director slows the film down, so a character facing some extreme, physical challenge moves in slow motion. I’ve been describing my current situation as a slow-motion crisis: and, it looks like it just slowed down a little more. It’s odd to think of relaxing our vigilance with respect to an out-of-remission cancer, but that’s the nature of the beast, I suppose.

February 20, 2008 - Still Stable

Not having heard anything about last Thursday’s CT scan results, today I put in a call to Dr. Lerner’s office. About an hour later, Denise from the office calls back with a message from the good doctor, who has examined the radiologist’s report. My cancer, he wants me to know, is “still stable.”

That’s six months, now, of my affected lymph nodes remaining unchanged in size. This indolent lymphoma of mine is lazing around, doing pretty much nothing (or, at least nothing the scanner can detect).

It’s pretty good news, about as good as I could hope for. (It would be nice if the cancer disappeared completely, but I know that’s not likely.)

I’ll see Dr. Lerner again on March 5th. Since there’s no change, I expect there will be no change in his recommended treatment, either: watch and wait some more. But, we’ll see...

February 14, 2008 - Hearts and CT Scans

Today I go to Ocean Medical Center for my 3-month CT scan. As I walk into the room where the scan will take place, I immediately notice that the large, fiberglass-covered donut of the scanner is covered with red paper hearts, stuck up there with pieces of surgical tape.

It’s Valentine’s Day, of course, and the radiology staff of the hospital is trying to make the place look festive. I give them an “A” for effort, even if the decorations look a bit haphazard.

It’s a reminder, to me, of what medicine is all about – or, at least, what it ought to be all about. Here’s a CT scanner, one of the highest of high-tech pieces of diagnostic equipment. Its purpose is to analyze the human body, breaking the complex reality that is a human life into constituent parts that can be expressed numerically. When I lie down on that sliding platform, and the whirring engine slides me slowly through the hole in the donut, the CT scanner will render my physical existence into images, that will tell my doctors what’s going on inside me. It’s a technological wonder.

Yet, as adept as the CT scanner is at depicting what I am, it’s absolutely blind to who I am. What are my thoughts, my hopes, my dreams, my fears? The scanner knows nothing of such things.

That’s where the paper hearts come in. They look incongruous, there, on the side of the scanner. But I’m glad to see them. They tell me the hospital staff cares about more than just numbers.

November 8, 2007 - No Test Anxiety

This morning I arise at 6:30 to slug down a bottle of contrast fluid, then at 9:00 drive over to Ocean Medical Center for a CT scan. The routine’s getting to be familiar indeed: the scan’s over before I know it. I don my clergy ID badge, afterwards, and look in on several patients from our church – making sure to cut off my patient ID bracelet before my first visit.

The roles reverse pretty quickly. I’m not a member of the hospital staff, but visiting pastors like me do get to wear a hospital photo-ID badge. Those two items – the paper wristband and the more substantial, credit-card-like plastic badge – are symbolic of a certain ambiguity of role I feel at times. Maybe I ought to just wear them both, I think to myself – just to make life interesting.

I’ve heard some cancer survivors talk about how anxious they get, around the time of their scans. I can’t say I’m feeling anxiety about the scan itself. I look on it this way: whatever it’s going to reveal is already going on within my body, so worrying about it isn’t going to make a bit of difference. It’s a wonderful thing that the doctors are able to peer into my body, non-invasively, and take measurements of my swollen lymph nodes.

I’m aware these results will determine whether it will be watch-and-wait for another three months, or whether further treatment of some sort will be called for. That’s momentous, to be sure, but I’m fortunate enough to feel at peace about it. I have a chronic, incurable cancer that’s already in the process of coming back. I also have every reason to expect that, when the malignant cells become numerous enough, it will be treatable. The only imponderables are how long it’s going to take, and then, what treatment we try next.

Speaking of treatments, there was a setback to cancer research this week, here in New Jersey. On Election Day, voters decided, 53% to 47%, to answer “no” to a public question that would have allowed the State to borrow millions of dollars to fund stem-cell research. (This question was meant to be New Jersey’s answer to the Federal government’s refusal to fund any research that might involve embryonic stem cells.) There was a well-financed campaign against this measure, that stressed not so much the moral objections from right-wingers (who, unreasonably, equate using a fertilized egg in the laboratory with destruction of a viable human life) as the impact on the State’s overstretched budget. The opponents also suggested that, if the pharmaceutical companies haven’t seen fit to fund this research out of their R&D budgets, then why should the State do so? (This, ignoring the fact that public-private partnerships are quite common in medical research, and have produced some significant breakthroughs in the past.)

It’s a shame more New Jersey voters didn’t realize the rich potential of stem-cell research to make a real, positive impact on human lives. Most people know someone, perhaps even a loved one, who has benefitted, or will one day benefit, from medicines developed through stem-cell research (if you know me, then you already know someone who has). I can’t think of a better use of tax dollars, myself.

For now, it’s back to business as usual – which means watch and wait.

October 1, 2007 - Avast, Ye Swabs!

Somehow I missed observing International Talk Like a Pirate Day on September 19th, but at least I get to use a little pirate lingo here. I have no idea who started this scurvy holiday, but methinks it’s an excellent idea. Arrrr, me hearties, but don’t ye know, ye can’t talk like a pirate without bringin’ a smile to yer face!

So how did I get on that subject, anyway? Swabs! Yes, it was swabs.

About noon today, the Manse doorbell rings. It’s a FedEx driver with a big plastic envelope for me, containing four sterile cotton swabs, along with instructions for using them to take four samples of cells from the inside of my cheek. This is for my HLA testing – the DNA test that will determine the baseline that will be used to find a compatible donor for a possible stem-cell transplant for me.

Following the instructions exactly, I gingerly pick up each swab, making sure it doesn’t touch any surface other than the inside of my cheek. I swallow first (the instructions say it’s not a saliva test), then rub each one vigorously on the inside of my cheek, with the same amount of pressure I use when brushing my teeth (again, just as the instructions say). Then, I wave them in the air for a minute or so to dry them, before placing a name-and-date label on each swab’s handle and positioning it in one of four slots cut into a little foam-rubber block. Into another courier-service envelope they go (DHL Express this time, for the return trip). I drop them in a DHL collection box in the parking lot of a real-estate agency down the street.

It’s got to be one of the easiest medical tests I’ve ever undergone. The implications of this test, though, could be huge.