June 27, 2011 – Hope Will Find You

Saw a real gem of an entry on Dr. Wendy Harpham’s On Healthy Survivorship blog (June 2). Exploring the subject of hope, Wendy quotes Rabbi Naomi Levy, whose book, Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living, chronicles her journey towards a deeper spirituality after her 5-year-old daughter, Noa, was diagnosed with a rare, fatal and degenerative neurological disease.

In a magazine interview, Rabbi Levy shares an anecdote from the time when Noa was preparing for her bat mitzvah, that rite of passage for girls crossing into the teenage years. With Noa’s learning disabilities, her mother didn’t quite know what she was capable of absorbing, when it came to studying the scriptures.

The Rabbi asked her young daughter what a particular Bible passage meant to her, and she replied, “‘Mom, I think what it means to me is, if you don’t like your life and things are not going well, if you try very hard you can find hope.’ Then she stopped and corrected herself. She said, ‘No…hope will find you.’”

Her mother reflects: “Noa was saying…that hope would find me, that hope was searching for us and that goodness and mercy and all these lessons are actually seeking us, tracking us down, and too often we are running away from them. We’re thinking it’s a struggle, but in reality what we can do is relax a bit and let all these blessings in, because they are all around us.”

Relax a bit.

Relax? Are you serious? When the bad news is coming so fast and furious?

Yes. No one said it would be easy, but there’s simply no other way.

In the medieval spiritual classic, The Imitation of Christ, Thomas à Kempis teaches: “To sum up, dear friend of Mine, unclench your fists, and let everything fly out of your hands. Clean yourself up nicely and stay faithful to your Creator.”

So much of spirituality is about letting go. And the first and greatest thing our desperate fingers are clasping is the illusion that we are in control. For a few seasons of life, most of us can carry off that charade to some degree, but eventually reality catches up. With a bang. Some hard piece of news may first turn our minds in that direction. Perhaps it’s a cancer diagnosis – or, in Rabbi Levy’s case, the unspeakably sad realizaton that she will one day bury her daughter. Even the most fortunate of strivers can’t keep the illusion going indefinitely. Eventually, even those titans who sprint relentlessly into the final lap must one day lean into retirement. Then, soon enough, come the gasping infirmities of age, and finally the awareness that Death will soon come calling.

The drunken Welsh poet Dylan Thomas counseled,

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”

Noble words, these, and not without a certain desperate bravery. Yet, in the end, the brash author of those lines succumbed to pneumonia, after imbibing huge amounts of whiskey on a bender lasting several days. It was by no means his first. Thomas was a tortured soul, who wore himself out in his frenzied pursuit of hope. Rage, however poetic, is hardly conducive to the discovery of inner peace.

We simply don’t have it in us to manufacture the variety or the quantity of hope we need. It can only be gathered in, and then only by those who have ceased to pursue it.

Young Noa Levy was wise beyond her years. Would that we all could be so perceptive.

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

I haven’t been as on the ball as I could have been, posting updates on my recovery. After returning home late Sunday afternoon, I needed another couple days to rest up, then on Tuesday evening I jumped back in with both feet, for our monthly Session meeting at the church (“Session” is Presbyterian jargon for “local governing board”). It’s been a whirlwind ever since.

Generally speaking, Memorial Sloan-Kettering was just great. Tremendous professionalism there, from every staff member I came in contact with. The one mix-up that could have been avoided was that I got a phone call from Dr. Boyle’s office on the day before my surgery, advising me that I needed to got to Manhattan immediately, for a pre-surgery testing appointment they’d only just made for me. It seems that, with the cancellation of my surgery 3 weeks before, no one had noticed that my pre-surgical testing (which had taken place 2 weeks before that) was now 5 weeks prior to my new surgery date. Since hospital policy declares that pre-surgical testing is to take place within a month of surgery, that meant I had to re-take some of the tests.

All they did was some blood work and an EKG, as well as have me undergo a physical exam by a nurse practitioner. I sure didn’t appreciate having to drop everything and jump on a NJ Transit train and then the subway, but I did make it there in the nick of time – then rushed back just in time to attend our niece, Elizabeth’s, high-school graduation that evening.

I even arrived in the city a little early – and so had 20 minutes to spare, to sit and listen to a lunchtime outdoor jazz concert at St. Peter’s Church, which just happened to be going on just as I walked out of the subway station. One of those quintessential New York experiences.

I suppose the error about the pre-surgical testing is understandable. It’s not every day that an operation is cancelled at the last minute, with the patient already on the gurney. I don’t imagine it happens all that often, either, that the rescheduling of said surgery exceeds the shelf life of the previous testing. It all worked out OK in the end.

A few random recollections on the surgery experience...

For over 5 years I’ve been going in monthly to have my port flushed, preparing for the eventuality when it may actually prove useful. So, when the pre-op prep nurse asked me if I’d prefer that she use my port rather than sticking me in the arm, I said, "Sure." Come to find out, she couldn’t get the needle into my port – and neither could another nurse she called in to try to do it. Both kept shaking their heads and saying my port is the tiniest little old thing they’ve ever seen: a pretty small target to hit with that needle. I guess the nurses in Dr. Lerner’s office, where I go for my port flushes, are more used to that kind of port, because I can only recall one or two times in all the years I’ve been going for port flushes that they haven’t hit it on the first try.

Then, I learned they probably couldn’t have used the port, anyway, because no one’s been able to get a blood return out of it for the past year or so – something that happens to these devices, as the years go by, which partly limits their usefulness. It still works with stuff going in, but there’s evidently some kind of one-way blockage that prevents them from pulling blood out the other way – something they surely need to do in the hospital, for certain blood samples and the like. Makes me wonder why I still go through the trouble of those monthly port flushes – although every time I ask Dr. Lerner about it, he says we may as well leave it in, because if I ever have to receive chemo again, it'll be useful.

I was surprised to learn from the pre-op prep nurse that MSKCC has recently enacted a policy of asking patients if they’d prefer to walk into the operating room, rather than being pushed in on a gurney. Evidently, there’s been some kind of study that’s revealed that certain patients find the surgery experience less stressful if they walk in under their own steam and hop up on the table.

No thanks, said I. My mental preparation for surgery involves going into sort of a zone where I just lie back and let it happen, and I find it easier for that to begin on the gurney, rather than in the operating room. So, I let ‘em push me. Different strokes for different folks.

They actually ended up inserting my IV needle in the operating room, because of all the time lost fussing around with the port. Not the usual plan, and I could tell this was causing a delay in the tight-as-a-drum operating-room schedule. The anesthesiologist herself did it, and she had a little trouble finding a good vein – evidently she’s not as good at it as some of the nurses are. She ended up sticking me in the back of my hand (never my favorite place, because it hurts like blazes) for an initial dose of anesthetic, then her plan was to put in a second needle in the middle of my arm, a place she told me it would really hurt, after I was zonked out. So, I woke up with two needles sticking out of my arm, with the one in my hand in an awkward place where I kept bumping it on things later.

I never did see Dr. Boyle after the surgery. He did come out and talk with Claire, of course, and told her that everything was successful. There was indeed a tumor visible on my thyroid, and he could see no sign of lymph node involvement – a good thing, though not something he’d expected to see, because the CT scan had indicated the lymph nodes looked clean.

The doctor I saw every day in the hospital was Dr Boyle’s fellow, Dr. Arash Mohebati. He’s the one who had initially marked my neck with a Sharpie, pre-surgery. That seemed to me an odd little low-tech safety check, in light of all the pre-operative scans that had been done – I suppose it’s ostensibly to make sure they don’t wheel me into the wrong operating room and take out my appendix instead. Still, the Sharpie routine seems a little ridiculous, since a specialized thyroid surgeon ought to have no trouble figuring out where the thyroid is located – and doesn’t need to rely on his own fellow to show him with an x-marks-the-spot, in any event.

I was really pleased with Dr. Mohebati. Compassionate, knowledgeable, a good communicator, unhurried when I had questions for him – in short, everything a good doctor should be. Even though Dr. Boyle is my official physician, Dr. Mohebati was there before, during and after surgery, and was really the person I dealt with, since Dr. Boyle’s involvement was limited to a time when I was unconscious.

My stay in the post-op holding area was way longer than anyone expected. After the nurse told me I had a place on the 17th floor, in the head-and-neck surgery unit (“our part of the hospital,” as Dr. Mohebati had put it), she came back and said “they took the room away from you.” Never did learn who the mysterious “they” was, nor why the last-minute change. I ended up going, just before 8:00 pm, to another room elsewhere in the hospital. When it became clear I’d need to stay in for the extra day to deal with the calcium problem, Dr. Mohebati came in and told me he’d arranged to have me moved to the 17th floor – which subsequently happened.

The rest of the stay was pretty uneventful. My Sunday-morning blood work showed a normal-enough calcium level, so I was released just after noon. In keeping with MSKCC’s new walk-on-your-own-two-feet policy, I was told I didn’t need to wait for a wheelchair, but could just hoof it out of the hospital on my own. So, that’s what Claire and I did. Felt more like checking out of a hotel room than leaving a hospital.

The ride home was a little uncom- fortable. I hadn’t thought beforehand about the distinctive experience of bumping along Man- hattan’s notoriously potholed-and-patched streets with a stiff neck. Behind the wheel, Claire did the very best she could, but she couldn’t improve on the condition of the streets. It wasn’t until we inched our way through the bumper-to-bumper traffic into the Lincoln Tunnel that things smoothed out.

On Monday, I was mildly alarmed about a tingling in my hands and feet, which I knew to be a symptom of low calcium. I spoke with someone in Dr. Boyle’s office, who relayed an instruction from Dr. Mohebati. He very helpfully suggested I double up on my calcium supplements (which are nothing more than Extra-Strength Tums) as well as my Calicitriol (a vitamin-D supplement that’s supposed to help build up the calcium level). By the next day, the tingling went away, so I guess that was just what I needed.

I’m taking daily Levothyroxine (Synthroid) pills, of course. The 200 mcg dosage is a standard figure, based on my weight. There will be blood work sometime in the next few weeks, in order to more carefully calibrate the dose.

I do feel a little different. A bit tired, with noticeably less appetite than usual (not a bad thing, I say, because getting to a more healthy weight has long been one of my goals). The neck’s been swelling a good bit, and there’s some stiffness under the skin around the incision – both of which, based on my reading, anyway, are normal side-effects. I’m supposed to leave the bandage on until it falls off, or until I see Dr. Boyle for the follow-up consultation this Wednesday, whichever comes first.

So far, so good...

June 19, 2011 - Thyroid Surgery Update

This is a simple, no frills posting to announce that my total thyroidectomy was successfully completed on Friday, as planned. I'm writing this from Memorial Sloan-Kettering Cancer Center in New York City. The original plan was for me to be home by now, but they've kept me on here because my blood tests have shown my calcium levels to be a little low.

This is surely related to my parathyroids, a series of tiny glands that regulate the body's calcium supply. During a thyroidectomy, the parathyroids are removed from their usual position at the back of the thyroid and reattached elsewhere in the immediate vicinity. Sometimes it takes a little while for them to wake up after being moved, which is evidently what's happened in my case.

I'm very much in recovery mode: still a bit weak, but able to make my way for several laps around the hospital hallway without support. I'm also trying to remember to pick up the little plastic breathing toy they gave me, and inhale through it, in order to restore my full respiratory function, post-anesthesia.

The incision area looks neat and clean, a narrow, 4-inch strip of gauze under a semi-transparent bandage. The whole neck area feels stiff, and I can turn my head only with difficulty.

Claire will be by later today. We left the car in the hospital parking garage, and she's been taking the bus and subway to her sister, Ramona's, apartment in Washington Heights, where she's been staying at night.

The calcium level's been looking better with each blood test, so hopefully I'll get my marching orders today.

June 13, 2011 – To Say or Not To Say

In an article in the June 10 New York Times, cancer survivor Bruce Feiler shares a list of 6 things never to say to sick people, and 4 remarks that are always welcome. With one glaring exception, I agree with him.

Here’s his list of “Nevers”:

1. WHAT CAN I DO TO HELP?
Nobody likes to answer this question, says Bruce. Rather than relieving sick people, this question puts the burden back on them to come up with something. Just do something, he says, and don’t worry about whether it’s exactly the right thing.

2. MY THOUGHTS AND PRAYERS ARE WITH YOU.
This is the one I disagree with him on, big time. On the contrary, I always find this incredibly comforting and empowering. He calls this a “mindless cliché,” a “hackneyed expression,” a “platitude.” I dunno, maybe I hear this often enough from people who are actually praying that it doesn’t strike me as false.

3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED?
I had a few experiences, too, of people recommending their wacky cures to me. (Can you say, “Quack, quack”?) Worst of all was the guy who stopped by to offer me a “free” $40 bottle of açai juice, then made sure to tell me he and his wife were in this pyramid marketing scheme, and I could use my role of influence as a pastor to help a lot of other people by getting this healthy product to them, and... need I say more?

4. EVERYTHING WILL BE O.K.
I’m glad you feel that way, but only hearing this from my doctor is going to make me feel any better.

5. HOW ARE WE TODAY?
Thankfully, this is one I never did hear from anyone – though I wouldn’t be too happy about it if I did. When you walk around with "Rev." in front of your name, I suppose people are less likely to talk down to you.

6. YOU LOOK GREAT.
Yeah, heard this a few times. Didn’t believe it for a minute, under the circumstances. Actually, I do say this from time to time when I’m visiting people in the hospital – but only when it’s really true. I figure if it’s true, it’s worth saying. If it looks to me like someone’s making a robust recovery from surgery or whatever, I figure it’s encouraging to pass the observation along. Maybe I’m wrong about that. And yes, I realize my CPE (Clinical Pastoral Education) supervisor, back in seminary days, would never go along with it. (“Don’t try so hard to be comforting. It’s not your job to make the patient feel better. Focus on the person’s feelings and reflect them back.”) Yeah, right. I do that a lot. I did learn something in CPE. Yet, if there’s one thing I’ve learned from the actual practice of ministry, it’s that there’s no formula that works 100% of the time. Sometimes you gotta go with your gut. And truth-telling is always a good thing, when it can be done in a way that’s empowering.

So much for the Don’ts. Now, here’s Bruce’s list of Dos:

1. DON’T WRITE ME BACK.
This is a good one. It says to the person, “I want to let you know I’m thinking about you, but I don’t want you to feel under any social obligation to respond. Save your energy for getting better!"

2. I SHOULD BE GOING NOW.
Don’t overstay your welcome. Always good advice. Being there’s the most important thing, but being there doesn’t mean hanging around indefinitely.

3. WOULD YOU LIKE SOME GOSSIP?
By this, he means “Change the subject. Talk about something else besides blood tests and IVs and prescriptions for a change." Yes!

4. I LOVE YOU.
“It doesn’t need to be ornamented. It just needs to be real.” This is the best one of all, for sure.

June 5, 2011 – An AIDS Survivor’s Testimony

There’s a thought-provoking op-ed essay in today’s New York Times, written by a man who’s been living with AIDS since the early days of that epidemic (Mark Trautwein, “The Death Sentence That Defined My Life”). While there are many dissimilarities between HIV-AIDS survivors and cancer survivors – most notably the horrible stigma and irrational fears that still lurk around HIV-AIDS, and which were especially intense in the early days – there are also some notable similarities.

At one point, Mark Trautwein and his partner, both infected with AIDS, actually packed up and moved to a new home closer to Mark’s family, because they were convinced both were not long for this world and they would need someone to care for them in their last days. Then, the protease inhibitor class of AIDS drugs came out, and everything changed. Suddenly, their looming deaths were pushed back from “soon” to “sometime.”

With the medications that are now available, AIDS – while still a dread disease – has become transformed from a sentence of certain death to something more akin to the “incurable but treatable” NHL that I have.

I’d be very cautious, myself, in drawing any parallels between my story and that of someone struggling to stay healthy with AIDS – especially someone like Mark, who lived through those dark years when no one even knew what this new “plague” was, nor what could be done about it, short of quarantining everyone who had it – but I did have to nod with recognition at what he says he’s learned from looking death in the eye:

“For 15 years, death had been ever present. I'd thought about it daily, got familiar with it and planned around it. It had amazed me that people could walk around every day as if they were immune to it. Now I had to adjust to a life I'd been schooled to believe I'd never have. It was one of the hardest and most welcome things I've ever had to do.”

Even though, at the time of my diagnosis, my objective chances of survival with NHL were far, far better than those of the early AIDS patients, I still went through a major phase of asking all sorts of “what if” questions about my own death – some of them weighty and philosophical, others trivial and even silly. What if this is my last year on earth? What does it mean to “get your affairs in order”? How does one know when it’s time to do that? Is it worthwhile springing for that new crown the dentist says I need?

At mid-life, I’d scarcely begun to absorb the fact that I’m going to die someday – not so much an intellectual realization as an existentially, gut-level one. Suddenly, the thought was with me constantly. I felt like I’d been sleepwalking for years – and, like Mark, I looked around at all the healthy people and wondered how they could be so oblivious to it all. “Why waste your time watching reality shows, people?” I wanted to shout. “Don’t you know your own reality is precious, and of limited duration?” (Thankfully, I kept my mouth shut. I could have been a real downer at dinner parties.)

Aware of my own “incurable but treatable” NHL diagnosis, I was curious to read of Mark’s perspective after 30 years of living with his own:

“My relationship with AIDS is one of my most enduring ones, and has both enriched and beggared my life. It robbed me of friends and loved ones, and with them memories we would have had and repositories of my own history. It ended a career I loved. It cost me a marriage. My intimacy with health care in America has been costly and exhausting. I know these are small prices to pay for life.

What I've gained is precious. Above all, the constant companionship of plague has taught me that life is about living, not cheating death. Fighting disease is required and struggling with life inevitable. But I accept the outcomes now, whatever they are. My disease does not make me special, nor does my survival make me courageous.

On that day I walked from the hospital knowing I had "it," I was given a great gift: the realization that we all dangle from that most delicate of threads and that the only way to live a life is to love it.

I haven't died on schedule, and I've been learning not to live life on one either.”

I don’t swallow 25 pills a day for my immune-system disorder, as Mark does for his. Nor do I have to worry about lingering social stigma. My daily road is still far easier than his. After more than 5 years of watch-and-wait monitoring – and even a recent PET scan that showed no potential lymphoma “hot spots” at all, though it’s surely still there – I’m even beginning to wonder if I’m losing the keenly introspective, philosophical edge I had back in my chemo days. Back then I felt lousy, physically, but in terms of spiritual discernment I felt like I was near the top of my game.

I hope I still love this God-given life as much as I did then. Yet, I’m also realizing how easy it could be to fall back into the poppyfields and go back to my blissful, pre-cancer slumber.

Cancer’s lessons are hard-earned. I hope I don’t lose them.

June 3, 2011– A Virus with No Name

I still don’t know what malady I came down with, that led to the postponement of my thyroid surgery. One thing I did discover, though: if you’re going to get sick, don’t do it on a holiday weekend.

I started feeling headachey Wednesday, the surgery was postponed on Friday, but it wasn’t until Tuesday that I was finally able to see Dr. Cheli, our family doctor, to begin trying to figure out what ailment I had. He ordered blood work, so it wasn’t until Thursday (yesterday) that enough test results had come back to allow the good doctor to conclude.... Wait for it now.... “We have no idea.”

He called me again today, and left a voicemail. Some more detailed test results had come back. The verdict.... “We still have no idea.”

He’d warned me it could be that way. Seems there are a lot of viruses that slink in and out before medical science can figure out what they are. Guess I had one of those shy ones.

That doesn’t mean it didn’t pack a punch. It was only this morning that I finally began feeling like myself again.

The thyroidectomy is rescheduled for Friday, June 17. Now I’m playing catch-up, because for most of the past week I didn’t have energy for doing very much (and even if I had, I wouldn’t have wanted to put anyone else at risk of getting that pesky bug).

Somebody said the best way to make God laugh is to tell God your plans. I think I can still hear the Almighty snickering.

May 29, 2011– Back to the Unknown

Best video I’ve seen on general cancer survivorship issues. Link courtesy of Dr. Wendy Harpham, who provided it on her survivorship blog a few weeks ago. It’s a little long – 17 minutes - but worth it:

From Cancer Patient to Cancer Survivor: Lost in Transition from The National Academies on Vimeo.

One of the survivors interviewed describes her experience as going "back to the unknown.” During treatment, in a certain sense you know what you’re up against. Afterwards, you try to reclaim the life you had before, but you find it’s no longer yours. For better or for worse, cancer has transformed it. The life you take up again has been permanently altered by the cancer experience, and there’s a certain amount of grief for what had been hoped for, but will never be. There’s also fear of what could happen, down the road, by way of recurrence.

It’s not all negative, of course. As the video points out, lots of people who go through the cancer treatment ordeal find themselves stronger as a result. That’s certainly been true for me.

I’d love to hear from some survivors, in the comments area, about what you think of the video.

May 28, 2011 – Another 11th-Hour Cancellation

After a rickety wooden footbridge toppled Catherine of Siena into a muddy stream, she is said to have offered up this exasperated prayer, in the hearing of her sisters: “Lord, I know you promise never to give us more than we can handle, but sometimes I wish you didn’t trust me so much.”

I'm beginning to wonder if the Almighty trusts me especially well when it comes to handling last-minute surgical cancellations. It's happened to me twice so far.

The first time was when Dr. Aron Gornish was getting ready to do an excisional biopsy of a swollen lymph node at the base of my neck. I got all the way to the Operating Room that time, when he discovered he could no longer palpate the lymph node (feel it with his fingers), so he decided the better part of valor was to send me home and schedule an ultrasound-guided needle biopsy with an interventional radiology specialist.

I didn’t make it quite that far at Memorial Sloan-Kettering. Just as far as the pre-operative suite. One of Dr. Boyle’s associates had already marked my neck with a felt-tip pen. The nurse was getting ready to insert my IV line, when she noticed a blotchy red rash on my arm.

“Do you have this elsewhere?” she asked.

“Yes,” it’s all over my body. “Claire noticed it this morning.”

“Does it itch?”

“No, I wouldn’t have known it was there till she told me.”

They already knew about the low-grade fever and the general feeling of malaise I’d been having since Wednesday afternoon. After some back-and-forth on the telephone Thursday afternoon, they’d advised me that the fever wasn’t high enough to be of concern. I was supposed to call them immediately, though, if my fever got higher.

It didn’t. But, in 20/20 hindsight, I wish I’d called them back before we’d left for New York, to tell them about the newly-emerged rash. Maybe it would have saved us the better part of a day in the car.

It was interesting to watch how rapidly this safety concern shot up to the top of the pre-surgical pecking order at MSKCC. Within the space of 15 or 20 minutes, two or three nurses had stopped by to examine my rash, then the anesthesiologist, then Dr. Boyle’s associate, then finally the big man himself. I don’t think it’s usual for the principal surgeon to see patients on the day of surgery until they actually enter the Operating Room. When the associate said he was going to get Dr. Boyle, I figured this was serious.

His lighthearted greeting to me was, “Hello, Red Man.” I had to agree it was an accurate description. As soon as I heard that, I figured the decision to cancel had already been made – although Dr. Boyle took me very kindly and gently through the decision-tree he typically worked through to make such a call. After he’d explained all the pros and cons, he’d actually gotten me to ask him to postpone!

This guy’s bedside manner is awesome.

So, after a restorative stop by the basement cafeteria (I hadn’t eaten or drunk anything since midnight, although a side-effect of my mysterious ailment is not having much appetite), Claire nosed the hood of her car into the mean streets, and we began heading home to the Jersey Shore – close to Rush Hour on Memorial Day Weekend.

It took us over 3 hours – even after judicious use of some back roads that, if New Yorkers ever heard any of us locals breathe a hint of their existence, we’d have to kill them.

While sitting in the traffic gridlock, I called both Dr. Cheli's (family practice) and Dr. Lerner’s offices (oncology/hematology), to tell them what was going on and see if they suggested any urgent action. Dr. Cheli’s office was already closed for the long weekend, and the outgoing voicemail greeting spoke of someone calling me back “tomorrrow,” if I left a message. I was quite sure that meant Tuesday. It also gave me an “emergency” number I could call for more immediate attention. I left a non-emergency message, asking for a callback about an appointment as soon as the office is open.

After that, I called Dr. Lerner’s office – which I knew would still be open on a Friday afternoon, even on a holiday weekend. They put me through to the nurses’ voicemail, and I got a call back from Janet, who’s done a lot of my monthly port flushes. She explained that Dr. Lerner had asked her to call me back and tell me it sounded to him like a classic allergic reaction to something, that it was probably unrelated to my lymphoma, and that I should just wait it out.

After thinking about it and discussing it with Claire, I decided not to call Dr. Cheli’s emergency number, and also not to go to the local emergency room. Diagnosing this mysterious ailment – if, indeed, we’ll ever know what it is – is probably going to require a lot of blood work and similar sleuthing. Not something that’s likely to happen on a holiday weekend. Until the problem is identified (viral, bacterial or allergy), nobody who isn’t already thoroughly familiar with my medical history would likely prescribe me any medicine anyway.

So, it’s watch and wait and feel lousy, here at the homefront. I already told Linda, our associate, that I don’t intend to change my former plan to sit the worship services out tomorrow. I’d be not much good to anyone, and besides, I could be contagious.

We’ll reassess on Tuesday, Lord willing and the creek don’t rise.

May 26, 2011 – The Last Drink

Here I am, staying up till midnight, guzzling water. It’s the last liquid I’m allowed to have until after my thyroid surgery tomorrow, which is scheduled for 2:45 pm.

I wish they’d give me a later time for that last drink, when surgery is scheduled for later in the day, as mine is. I’d be willing to set the alarm and get up in the wee hours, if that would mean I’d spend less time tomorrow feeling like I’m crossing the Sahara.

Today some uncertainty arose about whether or not I’ll even have the surgery tomorrow. The reason is that I’m running a low-grade fever. I don’t know what bug I’ve got or where I got it, but I’ve been having intermittent headaches, joint stiffness and feeling general malaise for a couple days now.

After taking Tylenol, I’m only a degree over normal, so the resident from Memorial Sloan-Kettering I spoke with today said we should proceed. He said to keep taking the Tylenol if I still have a slight fever, and call them if it gets any higher.

I sure don’t want to postpone this. Too much mental preparation has gone into it – not to mention clearing my calendar. If the fever proves to be an obstacle, though, so be it. It's up to the docs to make that call.

Not that I’m looking forward to a surgeon cutting my throat, of course. But I know it has to be done. I also know the odds of a successful surgical cure are about as high as they get - close to 100% - so that makes it a lot easier to contemplate.

The later time also means Claire and I will have the distinct pleasure (I’m being sarcastic, of course) of driving across Manhattan in the late morning. The original estimate was for a very early operation, which would have meant – with us having to be there two hours early – that we would have been crossing Midtown around 3 or 4 a.m. New York may be “the city that never sleeps,” but at that hour it would mostly be the Yellow Cabs and the occasional delivery truck we'd have to contend with. Oh, well.

The surgery should last about an hour. Then, it’s an overnight stay in Memorial Hospital, with a return home by car sometime on Saturday. After that, the prediction is for a day or two of recovery, then a return to normal activities.

More details about the surgery may be found here, in my March 28 blog post.

May 10, 2011– Parenting With Cancer

Here’s a new blog that’s worth checking in on from time to time. Parenting With Cancer is the brainchild of a New Jersey NHL survivor, Jen Singer. Her two sons are now in junior high. At the time she was undergoing chemotherapy and losing her hair, they were in elementary school.

A cancer diagnosis is devastating at any age, but for parents of young kids it’s especially hard. What do you tell them? How much will they understand? How to cut back on day-to-day responsibilities and concentrate on healing, when there are young lives depending on you 24/7 for care and nurture?

Our son Ben was in college and our daughter Ania was in high school when I was diagnosed. It was tough enough figuring out how to break the news to them, at that comparatively older age. I can only imagine what it must have been like for Jen, and others in similar circumstances, to tell their much-younger children they’d soon be seeing their mother without any hair.

Kids may not comprehend all the medical details, but at every age they do tend to pick up on the general emotional tenor of the household. I wouldn’t advise parents in Jen’s situation to try to hide the news from their young children. Better to tell them a little, in as non-anxious a way as you can, then wait for them to tell you if they want to know more. Now, here’s the tricky part. Young kids may not be equipped to ask you, in so many words, to tell them more, but even if they aren’t, kids will generally send non-verbal messages that they’re either satisfied or unsatisfied with the briefing you’ve just given them.

I also think it’s OK to get emotional in front of them, if that’s what it takes to be honest and real. You can’t use a young child as your therapist, of course, but for them to see mommy or daddy cry or express anger – and thereby learn that the sky doesn’t fall when that happens – is not a bad thing. Just remember, strength comes in many different packages. Clint Eastwood’s patented squinty-eyed, stone-faced, curled-lip impassivity is only one way of showing it (and probably not the best, in such circumstances). Just think of what a learning it could be for kids to watch their parents wrestle with how to adapt to a really tough piece of news, and come out at the other end of the struggle with an accommodation to the new normal.

Jen talks of listening to a priest’s homily about how wonderful heaven is, a message that she, as a parent and cancer survivor, was not ready to hear. In light of the glories of heaven, the priest was saying, how do we account for human fears of death, except as a stubborn fear of the unknown? Jen’s response:

“Not me. I have a fear of the known. And here’s what I know: If I die and go to Heaven today, I will not be here to raise my children — something I came awfully close to four years ago when doctors found a tumor the size of a softball in my chest.

I wanted to interrupt the priest’s homily, to tell him and the entire congregation that while Heaven sure sounds lovely, I have responsibilities here on earth — two of them — and they aren’t done being raised.”

She also admits to feeling a bit of survivor’s guilt, as she attends the funeral of a neighbor (another young mother), who died of ovarian cancer:

“As I snaked my way through the crowd, hugging person after person that I recognized from town, I realized, This could have been my funeral. And suddenly, I stopped walking. I stopped hugging people. I stopped looking at photos of my neighbor on vacation, on Christmas, at the school where our sons were in kindergarten together.

I stopped and thought about my own kids four years ago, when I was just two months from what could have been my own funeral.

And yet my neighbor is gone and I'm here.”

A cookie-cutter approach to coping with cancer is impossible. We’re all of us different, in one way or another, so we’ve got to chart our own path.

Still, Jen Singer describes herself as a “cancer sherpa.” Like those legendary Himalayan guides, she’s offering her mountain-climbing savvy to others setting out on the journey for a first time. For cancer survivors with young kids, her blog is well worth bookmarking.

May 4, 2011 - Tests, Tests, Tests

On Monday I hopped a New Jersey Transit train for New York City. The destination was Memorial Sloan-Kettering Cancer Center’s midtown outpatient facility, the Rockefeller Outpatient Pavilion. The purpose? Pre-surgical testing, in advance of my thyroidectomy coming up on Friday, May 27, at MSKCC’s Memorial Hospital on the main campus.

My appointment was for 11:15 with Dr. Anna Rita Marcelli, an internal medicine specialist who does pre-surgical screenings. Dr. Jay Boyle will be doing my surgery, but evidently the protocol at MSKCC is for the big surgeons to farm out the prep work to other physicians. These doctors are specialists their own right. Their task is to ferret out any pre-existing conditions that could potentially cause trouble in the operating room. It’s one of the benefits of going to a comprehensive cancer center.

I suppose that means that, if Dr. Boyle is the executive chef, then Dr. Marcelli is the sous-chef. This is not to detract in any way from Dr. Marcelli's abilities; in the world of haute cuisine, a sous-chef is a well-respected role. In fact, in her spare time Dr. Marcelli is a Professor at New York's Weill Cornell Medical College.

I quickly discovered she’s really, really good at what she does – mainly because she uncovered a potential problem in my case that led to a whole lot of additional tests. It also extended my stay in the city from what I’d guessed would be a couple of hours till about 6:30 p.m.

The first thing they did was send me for an electrocardiogram (EKG). Then, I went into a little examining room where a nurse checked my vitals prior to Dr. Marcelli’s examination. As she was taking my blood pressure (which was a little high, but on a subsequent test turned out fine), the nurse inserted my finger into the pulse oximeter, the little clamp with a glowing red LED that always makes me feel like E.T. The pulse oximeter measures the percentage of hemoglobin in the blood that’s saturated with oxygen.

In my case it read 90%, which is borderline for the condition known as hypoxia (abnormally low oxygen level). A normal reading is considered to be 97% or 98%.

I do have obstructive sleep apnea, and use a bipap machine to augment my breathing every night. The negative airflow of the bipap keeps my soft palate from sinking down and blocking my airway, which means I sleep much better with it than without it. One of the side effects of sleep apnea can be hypoxia, so I do want to be sure to talk about it with Dr. Gustavo De La Luz, my pulmonologist, when I get a chance.

As Dr. Marcelli came in, she gave me a thorough physical, but kept coming back to that less-than-stellar oximeter reading. After repeating the test a couple of times, she told me she wanted me to undergo some further tests, right then and there.

Earlier I had told her I’d had a problem last fall with a blood clot in my lower leg, for which I’d had a few visits with Dr. Franklin Frasco, a local vascular specialist. He’d determined that the clot was in a minor artery, and was therefore not in a position to break off and cause an embolism (arterial blockage) in one of the lungs. He told me to lose weight and get more exercise, and also to start wearing compression stockings (all of which I’ve been doing, although more sporadically than I should have). He released me from his care, saying I didn’t need to see him anymore.

Dr. Marcelli told me that, with the combination of my blood-clot history and the borderline oximeter reading, she wanted to rule out an embolism prior to my undergoing anesthesia on the 27th. Now, here’s where the power of a major cancer center like MSKCC comes to bear. Even though the Rockefeller Pavilion is an outpatient facility and not the main hospital, it’s state-of-the-art. They have the capacity, even at that location, to deliver just about any standard diagnostic test you could imagine, on very short notice. Between noon or thereabouts, and the time I finally walked out of the building about 6:30, I’d had an echocardiogram, a CT scan of the chest, an arterial blood test and a series of pulmonary function tests.

All of them I’d had before, except the echocardiogram and the arterial blood test. Still, most all my local experiences of such tests have involved several days of waiting. At MSKCC, once the doctor ordered it, the tests were stacked up one after the other in no time, and I swiftly went from each one to the next.

Dr. Marcelli had told me that, if there were any sign of an embolism, she would recommend that I confer immediately with another doctor, to determine “what to do next.” I took that to mean immediate hospitalization, and probably treatment with blood-thinners. At the end of the day (literally), no one suggested anything so drastic. Several subsequent pulse oximeter readings were at 96%, a considerable improvement from earlier in the day, and evidently no one saw anything worrisome in the CT scan or echocardiogram results, so I was cleared to go home.

I closed the place, being the last patient to leave the busy pre-surgical testing area.

I’d kind of expected to hear back from Dr. Marcelli in a day or two, summarizing her findings, but I haven’t as yet. So, tomorrow I think I’ll give her office a call and see if she turned up anything I need to know about.

My assumption, though, is “no news is good news,” so I’m not worried.

April 30, 2011 – Living Hope

Came across this little gem of an article today, in the online edition of Coping With Cancer magazine. It’s by Anne Lawton, an oncology nurse, and it’s about hope.

Hope, she's come to realize, is “the only word that matters” in her business.

Anne’s learned that, from the patients’ standpoint, the nature of hope changes over time. At first:

“People hope their doctor is good. They hope they make it through surgery, and they hope their cancer is treatable. They hope they can tolerate the chemotherapy.”

Later on in the cancer journey, many find themselves hoping for different things:

“They hope for a cure. They hope for a nice, full head of hair, eyelashes, and eyebrows. They hope the neuropathy and the other side effects go away. It's no longer just survival they hope for; they want their life back. They have a lot to do, and they hope the cancer never comes back.”

And if it should happen that the cancer does come back? Hope changes yet again:

“They hope for a life worth living, with few cancer-related side effects. They hope to live long enough for graduations, grandchildren, weddings, or that trip of a lifetime. They hope to complete their "bucket list.”

Finally, in some cases – though Anne doesn’t go there – when patients opt for hospice care, the hope is for freedom from pain, a clear mind, the opportunity to say farewell to loved ones and to know they’ll be provided for. A good death, in other words. When the time is right, no apologies are necessary for hoping for that.

Viewing hope as a continuum, can we really say it’s the same hope at the end of such a journey as at the beginning? I’d say yes, it is – although the hope has changed and matured. It’s grown, just as the patient has grown all through this troubling, painful, emotionally-taxing – and, yes, sometimes even spiritually-uplifting – journey.

1 Peter 1:3 celebrates how God “has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead.” Living hope. I think that ol’ apostle was onto something.

By God’s generous grace, hope is alive. It grows and changes as we grow and change. Hallelujah!

April 27, 2011 – This Is the Life

This Easter, I preached on the topic, “This Is the Life.” While, for many, it’s a phrase that conjures visions of shady cabanas on tropical beaches, shrimp cocktail and umbrella drinks close at hand, I was thinking about something different.

And no, I wasn’t thinking about what this guy means by the phrase, either:



“This is the life” is Jesus’ promise to his disciples in John 10:10, as he proclaims, “I came that they may have life, and have it abundantly.” It’s a promise they wouldn’t begin to understand until after the resurrection.

This whole matter of abundant life takes on a different cast when that life includes cancer. What does it mean to “have life abundantly” when that life, for a cancer survivor, includes a low-level sense of foreboding that’s always lurking somewhere?

I think Matthew’s account of the resurrection supplies an answer. It employs a curious turn of phrase, describing Mary Magdalene and “the other Mary” (probably Jesus’ mother), as they rush from the tomb, having heard the angel tell them Jesus has been raised from the dead. Matthew says, “they left the tomb quickly with fear and great joy...”

Whuzzat? With fear? And great joy? Sounds like an oxymoron.

No, it’s no oxymoron. Our emotions are seldom simple and elemental. They’re often mixed.

Actually, there are times in life when fear and joy do coexist. Try to imagine the first time you fell in love, and realized that person you loved felt the same way about you. Did you ever feel more alive than in that moment?

And wasn’t it also true that, having asked that special person (or having been asked) to go out on a date, and having heard that person say yes (or having said yes yourself), the thought suddenly occurred to you that you would have to actually participate in said date, and you would somehow have to avoid making an idiot of yourself? Fear and great joy!

Or, think about the most significant graduation ceremony of your life, that highest level of education you’ve completed. If you were able to attend such a ceremony, recall the joy of accomplishment you felt that day, in cap and gown, looking around at the grinning faces of all your classmates. Remember, too, the other thought that came to you at that moment: “What am I going to do tomorrow?” Fear and great joy!

Brides and grooms on their wedding day, first-time parents driving that baby home from the hospital – on these and many other occasions in life, fear and joy coexist. Not without some tension between them, perhaps, but there it is. This is the life.

The two Marys were likely feeling something similar, because the first thing the risen Jesus says to them is “Do not be afraid.”

This has nothing to do with whether or not they may happen to disbelieve what they’re seeing, or whether or not they suspect it may be some sort of ghostly apparition, some wraith vomited up from dark places to bedevil them. No, I think they realize who it is, and can at least grasp the bare outlines of the paradigm-busting wonder that’s taken place. I think the two Marys are afraid because they realize what the resurrection is going to mean for their lives.

Surely these wise women realize that, if they continue on as Jesus’ followers, and go tell the other disciples the good news they’ve just heard and seen, they’re going to unleash into the world a powerful force that there will be no stopping. From this day onward, they’re going to be riding a mighty wave that will propel them onward with terrific force – and at times that position on the crest of the wave will be a dangerous place to be.

Yes, of course they’re going to do it, of course they’re going to bring the good news to their companions. But their fear and their joy are intermingled.

This is the life. This is the new life God has given them. Yes, perhaps they recalled hearing Jesus say he’d come that they might have life, and have it abundantly, but until this moment those had been nothing more than inspiring words, a rhetorical flourish. How could they possibly have known that new life would come to them through the nail-pierced hands that now rest on each of their heads, and through the nail-scarred feet they are even now washing with their tears?

The Danish theologian Søren Kierkegaard once described this aspect of the Christian life using a very vivid image. He said that sharing the Christian faith with others is like handing them an extremely sharp knife.

A sharp knife is a useful tool. The greatest chefs, in fact, take meticulous care of their knives, sometimes even packing them into special carrying cases and bringing them home at night, so no damage will come to them. No one, Kierkegaard goes on, would think of handing a sharp knife to another person as one would hand over a bouquet of flowers. It’s just not done.

One of the first things we teach kids, in our church’s Cub Scout Pack and Boy Scout Troop, is how to safely hand a knife to another person. The boys don’t earn their “Totin’ Chip” – the special wallet card that allows them to carry a pocketknife – until they learn how to hand an open knife to a fellow Scout handle-first, and not let go of it until the other person says, “Thank you” – indicating he’s got it safely in hand. That’s because a knife is a useful implement, but it’s also dangerous. You’ve got to have a healthy fear of knives before you can use them safely.

Faith is just that sort of tool for living life as a cancer survivor. Most of us aren’t going to be cured, physically, by our faith. For whatever reason, God doles out complete spiritual healing only rarely, and according to no logic we can understand. Yet, if we’ve learned how to take this elegant tool in hand and use it safely - preventing it from slipping and causing further injury - we’ll find ourselves much better-equipped for living through days and years of remission and relapse, of tests and treatments.

Christian faith doesn’t put an end to fear. It does, however, take the natural, human fears we all have and puts them in perspective. Without the inner peace that comes of faith – which we Christians describe as knowing the risen Christ – the ordinary fears of human life can rage out of control, wreaking havoc in our lives, and in the lives of those we love.

The crucial difference comes from the other part of the equation: the “great joy” that counterbalances our very human fears. We can still seek it, even in the midst of cancer. Even a cancer-burdened life is still life, and Christ has promised that, in him, we can live abundantly.

I’m No Healthcare Consumer

Yesterday's New York Times contained a very sensible column by Paul Krugman. He asks a question that’s really rather obvious – so obvious, in light of our national healthcare-funding woes, it’s escaped the attention of a great many who ought to be asking it:

“Here's my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as "consumers"? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car - and their only complaint is that it isn't commercial enough.

What has gone wrong with us?”
– Paul Krugman, “Patients are not Consumers,” New York Times, April 21, 2011.

This is more than a mere quality-of-life question. It’s got big implications for economics, as we continue to struggle through our national healthcare-funding debate:

“Consumer-based" medicine has been a bust everywhere it has been tried. To take the most directly relevant example, Medicare Advantage, which was originally called Medicare + Choice, was supposed to save money; it ended up costing substantially more than traditional Medicare. America has the most ‘consumer-driven’ health care system in the advanced world. It also has by far the highest costs yet provides a quality of care no better than far cheaper systems in other countries.”

The problem is that there are an awful lot of people out there who profess an unquestioning, fundamentalist faith in what economist Adam Smith called, way back in 1759, “the invisible hand” of the market. For him, it was probably just a metaphor, but for his latter-day followers, it’s become a virtual deification of free enterprise. Attached to that invisible hand, in their fantastic imaginings, is a new Olympian god, who effortless regulates human affairs through astute transfers of capital.

That would be of little significance, were not living, breathing human beings mightily affected by such transfers.

That makes it, as Krugman correctly points out, a moral issue.

April 21, 2011 – Radiation Pill?

It seems lymphoma treatment isn’t the only cancer-treatment field that’s rapidly changing. Today I come across an article on my other cancer – thyroid cancer – indicating that one treatment that’s been talked about for me is currently being reconsidered by the experts.

I’ve been hearing all along that, once my thyroid is removed surgically, I’ll probably need to follow up with a single radioactive-iodine treatment. This is a dollop of radioactive material encased in a small pill, that I would swallow several weeks after surgery. Because thyroid tissue thirstily slurps up iodine, if it should happen that there’s any thyroid tissue remaining in my body after the surgery, the radioactive iodine would zap it.

Now, it turns out the radioactive iodine is risky in itself, and is possibly the cause of some secondary cancers. Recent studies indicate that a more nuanced treatment decision now needs to be made, weighing the likelihood that there is indeed any remaining malignant thyroid tissue against the slight – but real – risk of the radioactive iodine running amok and causing another cancer elsewhere.

The American Thyroid Association is now saying that radioactive iodine “should be used selectively and [only] in patients with intermediate and high-risk thyroid tumors.”

So, with a nodule presently at 1.5 centimeters, how’s my tumor classified? I didn’t ask Dr. Boyle about precise staging, so I can’t be sure.

That’s one thing I’ll need to remember to ask the doctor about, as the time of surgery draws near.

In the meantime, it’s Holy Week, and I’ve got a whole lot of other things on my mind. Sermons to write!

March 28, 2011 - Surgery Is Scheduled

Time to bring you all up to date on my decision-making about the thyroid surgery.

Last Wednesday I drove up to Memorial Sloan-Kettering Cancer Center’s satellite outpatient facility in Basking Ridge, New Jersey for a consultation with otolaryngologist Dr. Jay Boyle, who had been recommended to me by my lymphoma second-opinion physician, Dr. Carol Portlock.

Everything went smoothly at the Basking Ridge facility, which is in an impressive new building located a convenient one-hour drive from our home. After the usual filling-out of forms and a quick interview with an intake nurse, Dr. Boyle came right in and gave me all the time I needed to ask my questions.

I asked about whether I’d need to have the whole thyroid removed or whether a lobectomy (removing one lobe, or half the gland) would be a possibility. He said the scan results confirm there’s malignancy in both halves of the thyroid, so it all has to come out.

A follow-up radioactive iodine treatment is a possibility, but he wouldn't be able to say for sure about that until after the surgery.

Because it's a slow-moving cancer, we'd have a little time to think about it and choose a convenient date.

It’s highly unlikely that my thyroid cancer is in any way related to my lymphoma. Seems I’ve had a bad roll of the dice, two times running.

Dr. Boyle was very upbeat about the prognosis, as well he should be. Thyroid cancer is one of those rare malignancies that’s nearly 100% treatable with surgery. The surgery itself – while somewhat delicate, due to the thyroid’s location in the neck – is not very invasive, since the gland is very close to the surface. He explained there would be some stitches, but they’d all be internal and would dissolve on their own. A bright red scar, which he endeavors to hide as much as possible within naturally-occurring fold lines in the skin of the neck, would be visible for about a year or so, but would eventually fade so it’s only visible upon close examination.

An overnight stay in the hospital is a given, but nearly everyone goes home right after that and is able to resume normal activities in a few days. (I learned later, from one of the nurses, that MSKCC is starting to do some thyroid-removal operations as same-day surgeries.)

I do have a slight concern about a possible side-effect from the surgery, which is damage to the voice. This sometimes happens as a result of damage to one of the nerves that controls the functioning of the vocal cords, which are nearby. I explained that I may be more concerned about this than most patients, because I use my voice for a living. Dr. Boyle assured me that the national rate for this sort of complication is about 1%. “With me,” he said, “it’s a great deal lower than that.”

He dropped that statistic into the conversation in a matter-of-fact way that sounded in no way boastful (although I suppose it may appear that way, upon reading those words).

Afterwards, I spoke with one of the nurses about long-term issues, and she confirmed what I already knew, that I’ll need to take synthetic thyroid-hormone medication for the rest of my life. “If you miss a day or two, it’s no big deal,” she explained. “If you go on vacation for a couple weeks and forget to bring your pills with you, you need to find a pharmacy and get your prescription filled. Go six months without taking it, and you’re dead.”

Well, that doesn’t leave much ambiguity, does it?

I liked Dr. Boyle. There’s no doubt he’s one of the foremost thyroid surgeons around. While it’s a relatively simple operation, with a very high chance of success, why shouldn’t I go to one of the top-ranked surgeons, as long as he’s relatively close by and can fit me into his schedule?

It doesn’t hurt that he’s a Presbyterian, either. When he learned what I do for a living, he mentioned that he’s a member of the Westfield, New Jersey church.

A little while ago, I called Dr. Boyle’s office and confirmed a surgery date of Friday, May 27, at MSKCC in Manhattan (they don’t do surgery at the Basking Ridge facility). I’ll go into the city on May 2 for pre-admission testing.

I feel good about this, like I’m making good progress in dealing with it. As I said to someone else recently, when it comes to dealing with a new cancer diagnosis, it’s a real advantage to be a veteran.

March 26, 2011 – New Follicular Lymphoma Treatment Guidelines

Here are a couple of big changes in standard treatment guidelines for follicular NHL. According to the National Comprehensive Cancer Network, Rituxan plus Bendamustine (a single chemotherapy agent) is evidently replacing R-CHOP, the cocktail of Rituxan plus four chemotherapy agents I received, as the standard, first-line treatment. Bendamustine is more easily tolerated and doesn’t typically lead to alopecia (hair loss).

There’s also a change in the NCCN-recommended treatment for relapsed follicular lymphoma: Rituxan maintenance and chemotherapy followed by radioimmunotherapy.

If I were presenting as a newly-diagnosed NHL patient today, I don’t know if this new first protocol would apply to me; nor do I know, were my NHL to come back with a vengeance, if the second option would be what Dr. Lerner would order up. That’s because my initial diagnosis was not follicular, but diffuse-mixed-large-and-small-cell. The small-cell type I now have has many similarities to follicular lymphoma, but it isn’t exactly the same.

Still, it leads me to wonder if this news story is significant for any treatment I may one day need.

It’s interesting for me to hear that both Rituxan maintenance (that’s Rituxan administered not only along with chemotherapy, but also on its own, as a monthly maintenance infusion over a couple of years) and radioimmunotherapy (Bexxar or Zevalin) are moving up in the medical world. I've written about both of these in the past, as I've become aware of discussions about their possible usefulness. Now these treatments seem to have moved to the head of the pack - at least for follicular lymphoma.

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.