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 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.

June 6, 2010 - Our Most Elusive Possession

Great column a couple days ago, from New York Times columnist Nicholas Kristof. Instead of gallivanting around Africa or someplace crusading against injustice, as he often is, his June 4th column is very personal.

That’s because he’s had a cancer scare: diagnosis of a kidney tumor 90% likely to be malignant, then surgery – and then, against the odds, a biopsy revealing he’s in the lucky 10%. The tumor was benign.

Still – and understandably – Nicholas had a scare, that led him (as cancer has led so many of us) to examine his life a little more closely. Here’s the result:

“This is trite but also so, so true: A brush with mortality turns out to be the best way to appreciate how blue the sky is, how sensuous grass feels underfoot, how melodious kids' voices are. Even teenagers' voices. A friend and colleague, David E. Sanger, who conquered cancer a decade ago, says, "No matter how bad a day you're having, you say to yourself: `I've had worse....’

I don't mean to wax lyrical about the joys of tumors. But maybe the most elusive possession is contentment with what we have. There's no better way to attain that than a glimpse of our mortality.”

Preach it, brother!

A few verses from the First Letter to Timothy come to mind:

"Of course, there is great gain in godliness combined with contentment; for we brought nothing into the world, so that we can take nothing out of it; but if we have food and clothing, we will be content with these."

- 1 Timothy 6:6-8

March 28, 2008 - Incarcerated

Incarcerated. That’s the word I heard a couple of days ago from Dr. David Cheli, our family physician, after he took one look at my bulging navel. I have an incarcerated umbilical hernia, it seems. (Or had, anyway.)

I’ve known about the hernia for several years. It’s given me no trouble, and Dr. Cheli’s advice was simply to let it be, avoiding any strenuous abdominal exercises that might make it worse. These things sometimes do require surgery, he told me, but as long as the hernia wasn’t bothering me, there was no reason to go under the knife.

What’s happened this week is that the hernia did start bothering me. On Tuesday, I noticed it bulging out further than before, and I started feeling some pain. It looked and felt like someone had come along during the night and inserted a golf ball under my skin, just to the side of the navel.

I went to bed on Tuesday hoping the situation would resolve itself on its own, but when I awoke on Wednesday and noticed that not only was it still the same size, but that it had become inflamed, I figured it was time to pay a little visit to the doctor.

Dr. Cheli took one look at it, told me I’d probably need to have surgery that very day, and immediately flipped open his cell phone and began making arrangements. He called Dr. Gornish’s group (the surgeon I’ve seen twice before in the operating room, first to implant my port and second for the abortive attempt to do an excisional biopsy of a lymph node in my neck). Another member of the surgical group was available that day; it turned out to be Dr. Mark Schwartz, who had removed Claire’s gall bladder several years ago. Dr Cheli also phoned Dr. Lerner, to make sure there was no reason, from the oncology standpoint, that I couldn’t undergo surgery. Dr. L gave it a green light.

I appreciated the fact that he also phoned Dr. Gustavo De La Luz, the pulmonologist who treats me for obstructive sleep apnea, to make sure he was on board this time around. I’ve had trouble with anesthesia in the past – waking up on the operating table during my port-implantation surgery, as I went into an apneic episode and the anesthesiologist scaled back the juice. Dr. Cheli wanted to be sure those issues were addressed, this time. He told me Dr. De La Luz or one of his associates would stop by and see me in the hospital, and presumably intercede on my behalf.

Did I have time to stop on the way to Ocean Medical Center and get a little something for breakfast, I asked? Not a good idea, said the doc. Better to have an empty stomach before surgery. Well, I thought to myself once I’d heard that, I guess this is really happening. (How swiftly life can change.)

I did make one stop on the way to the hospital – at home, to pick up my prescription meds, and a couple of personal items like my iPod and a book to read. They were expecting me, in the Emergency Room (Dr. Cheli had phoned ahead). Soon after getting me into a hospital gown and tagging me with an i.d. bracelet, they told me I’d be admitted for sure. Claire met me in the E.R., and stuck with me throughout the day.

The afternoon passed pretty quickly, with a trip over to X-ray and news of an on-again, off-again CT scan (it was called off at the last minute, for some reason I never did discover – although not before I’d already imbibed the contrast fluid). Around 5 p.m., I found myself flat on my back in the operating room, arms stretched out cruciform-fashion.

I’d previously learned I’d be having general anesthesia, rather than light sedation. This includes intubation to keep the airway open, so apnea wouldn’t be an issue. (General anesthesia is standard for this operation, anyway, it turns out.) “I’m going to start you with a little sedation now, said Dr. Chen, the anesthesiologist – and, the next thing I knew, I was waking up in the recovery room.

I stayed in the hospital overnight, coming home yesterday. I have another week or so ahead of me of recuperating at home. So, here I am, in much the same state I was in during my chemo treatments (minus the hair loss and the nausea, of course). The pain pills make me feel a bit wooly between the ears. The difference is that, this time, I’ll be over it in a few days.

Incarcerated. Yes, it’s the right word to use, for now.

July 10, 2007 - Have BiPAP, Will Travel

Today, Claire and I drive over to Ocean Medical Center, for the needle biopsy of my superclavicular lymph node (medical jargon for "above the collarbone"). I've been through this procedure once before, for the January, 2006 needle biopsy of the bulky tumor in my abdomen, that confirmed the lymphoma diagnosis and helped chart my whole course of treatment. Once again, Dr. David Feng will conduct the procedure.

Dr. Feng is an "interventional radiologist." That, as I understand it, is a relatively new medical specialty. Basically, an interventional radiologist is a doctor who sticks something into your body, while gazing at images on a screen that are provided by some form of radiological scanner (like an ultrasound or CT scanner). Sometimes the procedure is done for diagnostic purposes (as with me, today). Other times, its purpose is to deliver some form of treatment (such as placing a stent, or performing the "radio frequency ablation" treatment that zaps lung or liver cancer, through a needle inserted directly into the tumor).

As we drive over there, I try not to think about the fact that I'm voluntarily walking into a place where somebody is waiting to stick a needle into my neck.

Ocean Medical Center's Interventional Radiology Suite opened a couple of years ago, to great fanfare. It's a specialized operating room, that contains not only an operating table, but also an array of radiological scanning equipment.

Anesthesia is mostly by sedation, rather than general anesthesia. When the nurse in the same-day surgery staging area asks me about prior difficulties with anesthesia, and I relate my tale of waking up on the operating table twice (during my previous needle biopsy, and during the surgery to implant my port), she explains that I won't be dealing with an anesthesiologist today. Dr. Feng, she says, is his own anesthesiologist – and, I won't see him until I actually go into the operating room.

O.K, I think to myself. I'll go with the flow on this one. Today, I've brought not only my BiPAP mask with me, but the whole BiPAP machine. (It's a lesson learned from experience.) When it comes time for them to roll my gurney down to the surgical suite, the shoulder bag with the BiPAP in it is sitting on top of my legs. I have to be vigilant in hanging onto it. At least one nurse mistakes it for my personal belongings, and tries to whisk it away into a storage locker.

When I get to the operating room, two nurses there introduce themselves, and immediately ask about the black shoulder bag sitting on top of my legs. I explain that it contains my BiPAP machine, that I use it every night for obstructive sleep apnea, and that I'd like to use it during the needle biopsy, if that's O.K. with Dr. Feng. Fortunately, they don't seem fazed by this, at all – although they do grumble a bit that no one from same-day surgery warned them I'd be bringing such a machine with me.

It turns out I'm going to undergo this procedure without even shifting onto the operating table. I'll stay right on the gurney. (Sort of like drive-thru surgery, I think to myself.) There's no convenient place to put the BiPAP machine, so I just shift my legs to one side of the gurney, and the nurse places it on the other side. I put the mask on, myself (I'm a lot more familiar with it than she is), and she hooks up the tubing and plugs the electrical cord into an extension cord she pulls down from the ceiling. I explain that, once the mask is on, I won't be able to talk without first taking it off (the positive airflow of the BiPAP into my nose creates a sort of vacuum effect that keeps my mouth closed: which is precisely why the thing is so effective in preventing apnea – the dropping-down of the soft palate and its side-effect, snoring).

So far, all my dealings have been with the two nurses. I haven't seen Dr. Feng at all, and – with me looking straight up at the ceiling with the BiPAP mask on – I realize the chances of my having any meaningful conversation with him, pre-surgery, are not good.

The nurses shave the area at the base of my neck (I've got body hair there), then apply antiseptic solution. They explain that I'll first get some novocaine injections around the target area, and that I'll feel some pain and burning from that. I do, but it's not severe. Around now, I become aware that Dr. Feng is in the room. Because of my flat-on-my-back perspective (and because the nurses have directed me to turn my head to the left, away from the right side where they'll be working), I never do see him. I hear his voice, though – as he squeezes some ultrasound goo on the base of my neck, explaining that he's first going to take a look at the enlarged lymph node.

The next thing I hear is the nurse, explaining that she's going to start the sedation. Patients generally respond one of three ways, she tells me: they sleep, they get "very mellow," or they get very chatty. She doesn't think I'm the sort that would fit into the third category, she says. (Brilliant deduction, Sherlock; I couldn't say anything with the BiPAP mask on, even if I wanted to.)

As it turns out, my response is somewhere between sleeping and "very mellow." I feel no pain throughout the procedure, although I am aware of a repeated clicking sound – which, I realize, at the time, is probably Dr. Feng, doing whatever snipping-out of tissue he does, using the hollow biopsy needle. It seems like no time at all before I hear Dr. Feng's voice saying, "We're all done." One of the nurses explains that a pathologist has been on hand, and has confirmed that the biopsy produced a large-enough sample for analysis.

I have no recollection of the trip back to the same-day surgery staging area – other than deciding to use the BiPAP there for a while as well, to take a little snooze. I awake a while later, with Claire sitting by my side, and it's not long before the someone feeds me some lunch, and the nurse tells me I can get dressed and head home.

I see Dr. Lerner on Friday, and should learn of the results then.

June 25, 2007 - The Operation That Wasn't

Today I go to Ocean Medical Center for my long-awaited surgical biopsy (removal of a swollen lymph node near my right collarbone). I get all the way to the operating table, but then the operation is abruptly called off. Here’s the story.

I arrive at 2:30 p.m. (My original time was 1:30, but the hospital same-day surgery department phoned me to push my appointment back an hour, due to operating-room delays). I’m ushered back into the pre-op area, then prepped for surgery (don a hospital gown, get an IV line inserted, answer lots of medical-history questions). I meet Dr. Jeffrey Winkler, the anesthesiologist du jour, and discover that this doctor – unlike the one who sedated me last week, for my colonoscopy – has no problem with my using a BiPAP machine in the operating room. He does explain that I’ll be under “conscious sedation” – which means I’ll probably be aware of some of what’s going on in the O.R. With this kind of surgery, he explains, most of the pain control is local anesthesia, administered by the surgeon. The sedation is just to keep me comfortable, while all this is going on.

Two and a half hours after we arrived at the hospital, an orderly shows up to wheel me into the surgical area. After 10 or 15 more minutes’ waiting outside the O.R., a nurse wheels me inside, lines up my gurney next to the operating table, and has me slide over. Dr. Winkler is busy behind me, preparing to administer anesthesia. Dr. Gornish, the surgeon, comes in and greets me. “Let’s find this thing,” he says – all business – and he begins feeling around the base of my neck with his fingers. He seems to be taking longer than I’d expect, and soon I learn the reason why. He can’t locate the swollen lymph node he’d distinctly felt nearly a month ago, when I saw him in his office.

Dr. Gornish consults the diagram he drew at the time, then comes back and palpates me some more. Still no sign of the swollen node. It wouldn’t be responsible to proceed with the surgery under these circumstances, he explains. He could end up cutting me in the wrong place, then have to enlarge the incision until he found the suspect node. I could end up with way too much muscle and nerve damage. The best thing to do, he thinks, is for me to go for an ultrasound-guided needle biopsy. It won’t produce as large a tissue sample for the pathologist to look at, but at least the procedure can be accurately targeted. First, though, he’ll write me a prescription for a simple ultrasound, for a quick look-see.

In moments, the O.R. team swiftly undoes all the pre-op preparations they’ve just taken me through. There’s some light-hearted kidding around, among these twentysomething nurses and technicians, about my having missed out on the drugs (not the first thing on my mind, to be sure). I never do receive any anesthesia – although Dr. Winkler does tell me that, just before the cease-and-desist order, he gave me an anti-nausea medication through the IV line. It should cause me no ill effects.

Someone wheels me back to the same-day surgery staging area. In the curtained-off cubicles around me are several other patients, the few stragglers remaining after a long day of surgery. The woman across from me is holding an ice pack to the side of her face. In the cubicle next to her is another woman with a vomit bucket on her lap. Both of them have that ashen, post-surgery pallor. The nurse calls Claire in, removes my IV, and tells me I can get dressed. I don’t know whether or not I should feel fortunate – especially considering the fact that I may have to go through this whole routine soon again. We’re home by 6 p.m.

What does all this mean? It’s anybody’s guess. Because the swollen lymph nodes have been visible on various scans since March, I don’t think they were merely the by-product of some transient infection – though I’m no medical expert. If they were cancerous, then did the cancer suddenly and inexplicably reverse itself? Or are they still hiding out, but too deep, now, to be detected by touch?

It’s too early to say. The only certainty is that more tests are in my immediate future. Tomorrow I’ll leave a message for Dr. Lerner at his office, and find out what he recommends.

One way or another, cancer is forcing me to live one day at a time.

June 22, 2007 - You Takes Your Chances

Dr. De La Luz (my pulmonologist) and I have been playing telephone tag for a couple of days. Late this afternoon, he calls back. I begin by telling him there was “some confusion” in Same-Day Surgery, when I was there the other morning (see yesterday’s blog entry). He corrects me immediately: let’s call it “commotion,” he says, not confusion.

OK, I say. Fair enough. We’ll call it commotion. (He’s sensitive about undermining his colleagues, evidently – which speaks well of him.)

I explain what happened: how the anesthesiologist basically overruled his recommendation that I use a BiPAP machine to keep my airway open during the colonoscopy. Turns out, Dr. De La Luz heard something about it that very morning. He didn’t actually talk to the anesthesiologist, but to one of the respiratory technicians, who evidently called him while the debate (“commotion”?) was going on.

As I talk with him, it becomes clear that there’s an established hierarchy of authority in the hospital, with each specialist having absolute sway over his or her own little area. When it comes to the choice of anesthesia techniques, the anesthesiologist reigns supreme. That means Dr. De La Luz’s suggestion that I use a BiPAP machine during my procedure is just that: a suggestion.

I can understand that. The anesthesiologists do know their narrow, little area of medicine better than anyone else. The only thing is, as a pulmonologist, Dr. De La Luz knows far more about obstructive sleep apnea than most other doctors. It was clear to me, from Dr. B’s unfamiliarity with BiPAP machines, that he’s considerably less well-informed about sleep apnea. Yet, because of the established pecking-order, Dr. De La Luz isn’t about to challenge him.

Anesthesia is a little, self-contained principality within the larger medical world. It’s like walking from Rome into St. Peter’s Square, thereby crossing the border into Vatican City. In that rarefied atmosphere, the ordinary rules no longer apply.

Having learned this, I can’t say it gives me a great deal of confidence. Anesthesiology is one of the few medical fields where patients don’t get to choose their doctors (pathology is another one). You pays your money and you takes your chances, as they say. Whichever doctor you get is the luck of the draw.

That means patients can be put in the position, as I was, of having our longtime physician’s professional judgment overruled by some seeming newcomer we’ve never met before. That unfamiliar doctor’s word is law. To me, that’s scary. What accountability is there, for those who rule over these self-contained medical principalities? With other medical specialties, one can make the case that market forces will eventually cull out the bad apples, as patients avoid doctors with bad reputations. With anesthesiologists, who rarely have any repeat customers, an awful lot of patients could experience unnecessary pain before anyone catches on and starts flagging a doctor as less than competent.

I’m not saying anything like that about Dr. B, the anesthesiologist I had the other day. After all the commotion, he did a fine job of keeping me comfortable during the colonoscopy. I can’t say the same about the nameless anesthesiologists who watched over me my last two times in the operating room – they evidently didn’t pay sufficient attention to my sleep apnea. The problem is, having had bad experiences on the operating table in the past, you want to take proactive steps to prevent that happening again. The “pay your money and take your chances” system of assigning anesthesiologists – which effectively bars those doctors from talking to their patients until moments before their surgeries – stymies any attempt of patients to advocate for themselves.

I think the system needs to be changed. Why can’t patients meet with their anesthesiologists at the same time they come in for their pre-admission testing? That way, they could share their medical histories far enough in advance that the doctor wouldn’t have to make snap judgments about which techniques to use – and, the patients would be looking upon a familiar face the morning of their surgery, rather than some stranger.

Most medical specialties have caught up with the fact that it’s a new world out there: patients are better-informed about health care than ever before, and want to participate in their own care decisions. It’s about time anesthesiologists got with the program.

June 21, 2007 - What the Right Hand Doesn't Know

This morning I go to Ocean Medical Center for a colonoscopy. This is a routine “wellness” test – the obligatory 50th-birthday look-see by a gastroenterologist. Inasmuch as this is a screening test for colorectal cancer, I suppose it falls within the purview of this blog (even though it has nothing to do with lymphoma).

Do not fret, gentle reader. I promise to spare you the grisly details. Suffice it to say that the test itself isn’t bad (I slept through most of it). It’s the fasting-and-purging regimen of the previous day that’s the worst part – as any colonoscopy veteran will tell you. Yet, even that doesn’t live up to the negative hype.

The most significant aspect of this colonoscopy, to me, is its timing. It happens to take place a few days before my excisional biopsy (which is scheduled for this coming Monday, June 25th). With all my anesthesia woes during my last two surgical experiences – the pain I felt during my core-needle biopsy in December of 2005 and during my port-implantation surgery a month later – I'm looking on the colonoscopy is a sort of practice run: a chance to work out any communication difficulties among my doctors.

That’s the theory, anyway. The reality proves to be very different. Here’s what I did, in a vain effort to try to prevent the communication snafu that did, in fact, happen:

1) I informed my gastroenterologist, Dr. Aaron, that when I had my port-implantation surgery a year and a half ago, I woke up on the operating table, feeling pain. I told him I have sleep apnea, and use a BiPAP machine every night. He told me I ought to speak to the anesthesiologist, to make sure that doc’s informed of my history. (And who will the anesthesiologist be, I asked? Search me, says Dr. Aaron. It’s a group. You don’t meet your anesthesiologist until the morning of the surgery. But, he says, if I call his office the day before, maybe one of his staff can scope it out.)

2) Earlier, I'd scheduled an appointment with Dr. De La Luz, my pulmonologist, to consult about anesthesia issues (this, with my biopsy surgery in mind). Because that appointment was already scheduled for a few days prior to the colonoscopy, Dr. Aaron suggested I ask him about that procedure as well. When I saw Dr. De La Luz several days ago, he repeated what he’d said to me some months before: there’s no reason you can’t use a BiPAP machine in the operating room. Dr. De La Luz scribbled a prescription for me to give to the anesthesiologist that morning, listing my BiPAP settings. Should I try to talk to the anesthesiologist ahead of time, I ask him? No need, says he. You don’t know which one you’ll get, anyway. Just give the doc this slip. They have BiPAP machines on hand. All the respiratory technician has to do is calibrate it to your settings, and you’re good to go.

3) I call Dr. Aaron’s office, anyway, the day before, to see if I can get an anesthesiologist’s name. No luck – they have no idea which one it’s going to be. Based on what Dr. De La Luz told me, though, I don’t worry any more about it.

Sounds good in theory, right? Wrong! When the scrubs-clad anesthesiologist (I’ll call him “Dr. B”) comes in to see me in the outpatient-surgery prep area, he picks up Dr. De La Luz’s little missive that's clipped to my chart. What’s this, he asks?

I’ve got obstructive sleep apnea, I explain. This is so you’ll be able to hook me up to a BiPAP, so I won’t slip into an apneic episode, so you won’t scale back the anesthesia, and so I won’t wake up in flagrante surgico, as happened the last two times I had surgery. (Truth to tell, I wasn’t so glib at 7:30 in the morning, after a day subsisting on clear liquids, jello, and a 64-ounce bottle of laxative – but, a story like this one does gain in the retelling.)

Dr. B. furrows his eyebrows. I’ve never seen a machine like that used during a surgical procedure, says he. Then comes the real kicker: “What’s a BiPAP, anyway?”

Uh-oh, I think to myself. I’m in trouble. My anesthesiologist has never heard of a BiPAP machine.

Non-medical types are more likely to have heard of the more-common C-PAP – the BiPAP’s kissing cousin – but I’m surprised to meet an anesthesiologist who isn’t familiar with it. (And Dr. De La Luz had been so confident: all I had to do was hand over his little note, and everything would be fine!)

The thought crosses my mind that maybe I ought to just get up, go home, reschedule the colonoscopy, and start all over again: making a more energetic attempt to breach that impregnable, bureaucratic wall that keeps anesthesiologists from communicating with their patients in advance.

No, I say to myself. Think about this carefully. A colonoscopy is more of a diagnostic procedure than a surgical operation. Sure, it’s invasive, but – except for the possible removal of a polyp or two, deep within my intestines where there aren’t so many pain receptors – I’m not going to be cut. Besides, I’m not crazy about the idea of trudging back to the pharmaceutical barkeep for another of those jumbo laxative cocktails.

Dr. B explains his reservations. If I should have a problem with acid reflux in the operating room, while my gag reflex is suppressed by the anesthesia, the positive airflow from the BiPAP could cause me to aspirate some nasty stuff into my lungs, causing pneumonia.

Well, then – says I to him – I’m confused. Could you help me understand why a pulmonologist – an expert in BiPAP machines – would tell me it’s common to use it as a piece of operating-room equipment, to ward off apnea?

Hold on just a minute, says Dr. B. Let me talk to a respiratory technician.

Sure enough, the respiratory tech shows up a few moments later – wheeling in a BiPAP machine. She leaves it at the foot of my gurney, ready to go. Dr. De La Luz must have been right, after all, I think to myself.

But, not so fast. I’m still not out of the woods. Who should show up next but the head respiratory technician? There’s a problem, she says. They don’t have the same sort of face mask I use at home. The home version covers the nose only. The hospital version covers both nose and mouth, and is actually used more for emergency resuscitation than for keeping the airway open during routine surgery. You’ll have the mask strapped very tightly to your face, she tells me – more tightly than your BiPAP mask at home. As you’re drifting into or out of consciousness, you might feel disoriented and try to rip it off. And that would bring the whole procedure screeching to a halt.

Nasal C-PAP or BiPAP mask

Moments later, Dr. Aaron shows up, looking concerned. He’s evidently been talking to the other two. He tells me he strongly recommends against the BiPAP machine. The risks are just too great. He’s done hundreds of colonoscopies, many of them on people with sleep apnea, and he’s never had that kind of problem. The procedure is brief, the anesthesia is light, and it will all be over before I’m likely to have any breathing difficulties.

With that, I give up. I’ve run up against an all-too-typical problem of hyper-specialized American medicine: dueling doctors, with the patient caught in the middle. The right hand doesn’t know what the left hand is doing. How do I decide?

Well, at this point it’s is two docs against one – and the chances of tracking down Dr. De La Luz for a confab, at this early hour, are probably nil. Yes, I’m scared to repeat my previous, waking-on-the-operating-table experience. But, I sure don’t want to repeat the colonoscopy prep at some later date, either.

Just forget the BiPAP, I tell them. Let’s go ahead without it. With the procedure being so short, I think I can probably get through it.

It all turns out OK. I do open my eyes at one point, and twist around to look at the monitor. There, I catch a glimpse of a cavernous-looking orange tunnel that is my large intestine – but, I feel no discomfort. Moments later, I hear a voice telling me to settle down, and I close my eyes and go back to sleep (I expect Dr. B may have given me another squirt of sleepy juice, through my IV line).

Later, back in the recovery area, Dr. Aaron stops by to tell me things looked pretty good in the ol’ intestines. He did excise a couple of “innocent-looking little polyps” and is sending them off for a precautionary biopsy, but he doesn’t think they’re likely to be cancerous.

I’m relieved by the results, but a little rattled at how the medical bureaucracy foiled my best efforts to try to head off a very real problem, one I’d experienced twice before. I’m really not trying to second-guess the doctors. I just want to be sure the doctors do talk to one another. Is it too much to expect that the right hand will know what the left hand is doing?

May 31, 2007 - Seeing the Surgeon

Today I visit the surgeon, Dr. Gornish, in his office, to consult about my upcoming biopsy. I've brought a huge pile of scan results with me, in their oversize envelopes (checked out from the radiology file room at Ocean Medical Center). I asked them to give me everything. It's sort of a data dump, but I didn't want to risk leaving anything behind that the doctor may need.

It turns out Dr. Gornish looks at none of them – the only thing he's interested in is the radiologist's narrative report that Dr. Lerner's office faxed over, describing the results of my recent CT scans of the neck:

"New enlarged right level IB lymph node anterior to the right submandibular gland measuring 21 x 13 mm.

New enlarged right supraclavicular lymph node measuring 19 x 17 mm.

New enlarged aorticopulmonary window lymph node measuring 16 x 15 mm."

That's radiologist- speak. In ordinary parlance, those are lymph nodes near the jaw, near the collarbone and somewhere deep in the chest.

Which one to remove? Dr. Gornish has a clear preference: "I don't do jaws, if I can avoid it." (Maybe because I'd be left with a highly visible scar?) Since the one in the chest is pretty inaccessible, that leaves the one behind my right collarbone as the most likely target. He says he'll plan to remove most or all of it.

He palpates the area by the collarbone, and locates the swollen lymph node. He moves my finger over to it, and I think I can feel it – though, if he hadn't pointed it out, I don't think I'd ever have known the difference between it and the surrounding tissue. Its size – 19 x 17 mm – is about the diameter of a nickel. It's down pretty deep. Because I'm overweight, the surgeon explains, he'll have to cut down through a large area of fat just below the skin, just to reach it. That will make the surgery more difficult – something I remember him saying about my port-implantation surgery a year and a half ago, which was in roughly the same area.

Then, I raise my biggest concern with him: anesthesia. I have sleep apnea, and use a BiPap breathing machine every night to keep my airway open. During my last two surgical experiences – the core-needle biopsy and the port-implantation surgery – I woke up on the table, feeling pain. I understand why this happens: under the relatively light sedation used in these quick operations, if I go into an apneic episode, the anesthesiologist scales back the anesthetic, until I start breathing again. Unfortunately, that also means I start waking up. It's not fun, believe me.

I explain to him that I've discussed the situation with my pulmonologist, Dr. De La Luz, who's offered to consult with the anesthesiologist about getting a BiPap machine, calibrated to my prescription, into the operating room.

Dr. Gornish explains that this is the anesthesiologist's department, not his. He suggests I get the phone number of the anesthesiology group, and talk with that doctor several days ahead of time – not just on the morning of the surgery, which is the usual practice.

I make a mental note to do so – but, to me, it's a tragic illustration of the fragmentation of modern medicine. There are many advantages to the hyper-specialization of medicine, but sometimes there are things that fall through the cracks. My experience has been that the specialists I don't see, or choose for myself – the anesthesiologists, the pathologists, the radiologists – are the ones most likely to cause problems. Most of them perform their narrow specialty duties extraordinarily well, but they don't know us, the patients. They only know a small piece of us. They have no opportunity to consider us holistically. Last time, I mentioned my sleep apnea to Dr. Gornish, and I also mentioned it to the surgical-masked anesthesiologist, as he came in to introduce himself to me, just before they wheeled me into the operating room. By then, it was surely too late to get a BiPap into the operating room, and have it calibrated according to my prescription. Even if I'd been aware of that possibility – and I wasn't, back then – I couldn't have done much about it, other than ask that my port-implantation surgery be postponed (and, with my first chemo treatment planned for the next day, I wasn't about to do that). The result was some really nasty – but entirely preventable – pain.

After speaking with the surgeon, I go into the surgical group's scheduling office. The date they offer me is Monday, June 25th, nearly a month away. (Mental note: call Dr. Lerner's office, and make sure this biopsy truly isn't so urgent.)

June 25th is just two days before Claire and I are due to fly to Utah, for a national retreat for Presbyterian ministers. I ask if I can travel so soon after the surgery. The booking clerk says she doesn't know, but calls Dr. Gornish in, and asks him. He says there's no reason why I can't fly – though I'll be wearing a bulky bandage, and I'll want to bring a lot of extra gauze with me.

No thanks, I think to myself. The retreat would hardly be the relaxing, restorative experience it's meant to be, if I were worrying about caring for a surgical incision. And, if I were to have a post-operative infection, thousands of miles from home – I don't even want to think about that. Better to sacrifice my enrollment deposit than be a nervous wreck for days. (It's a good thing I haven't bought plane tickets yet.)

That timing also means I'll find it difficult to get any quality time in our Adirondacks place this summer. During the month of July, when I'd planned to be up there, I'll need to be running back and forth between Dr. Lerner's and Dr. Portlock's offices, getting their opinions on what the biopsy results mean, for good or for ill.

Bottom line: whether or not this is actually a relapse, cancer is still causing havoc in my life. I'll do what I have to do. But I won't be very happy about it.