November 29, 2018 — Back to the Operating Room

It’s been more than a year since I’ve posted to this blog — which is a good thing. I haven’t had a lot of medical news to report. But now, that situation has changed.

Looking back at my past entries, I see that, on August 9, 2017, my endocrinologist Dr. Stephanie Fish was talking with me about the slowly-growing lymph nodes in my neck. She said at that time that they were big enough to remove surgically, but that I could also wait on the surgery if I preferred.

I chose to wait. She told me I’d probably need surgery within 2-5 years, depending on what happened to the thyroglobulin numbers.

Well, it’s not even two years yet, and the thyroglobulin numbers have climbed at a faster-than-expected rate. In subsequent visits with Dr. Fish and my surgeon, Dr. Jay Boyle, I got the unmistakable impression that — based on those rising numbers, as well as measurements of my lymph nodes taken by ultrasound scan — my doctors were ratcheting up their pro-surgery lobbying efforts.

Part of my hesitation has had to do with non-cancer-related realities of my life. After 27 years serving one congregation, I’m now in the first year of a new pastorate, and loving it (I started on February 1, 2018 as Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey). I’ve been feeling hesitant to break the momentum of this critical first year, and as long as my doctors were at all open to a watchful-waiting approach, I’ve been content to coast along.

Besides, there’s a bit of a risk to this surgery. Although they reassure me that my cancer is slow-moving and my prognosis is good — and that there’s a strong likelihood the surgical solution will be effective — there are structures in the neck that could sustain collateral damage from the surgeon’s scalpel. The principal concern is nerves: especially one that controls the ability to lift the arm higher than the shoulder and another that controls my left vocal cord.

I figure I can live with some decreased mobility of my left arm, should that be the result. The vocal cords are a different matter: I speak for a living. Dr. Boyle tells me some permanent hoarseness of voice is a side-effect in about 25% of cases. (I’m assuming he’s talking about the general average; as a surgeon who narrowly specializes in this type of surgery, his personal average is surely better than that.)

Until about a month ago, I was hoping I could postpone the surgery until early in 2019. Considering the rhythms of parish life, there’s just not a good time for a pastor to take medical leave in the late fall — what with the annual stewardship campaign, and with Advent and Christmas following soon after.

Drs. Fish and Boyle were clearly not pleased with my foot-dragging, so several weeks ago I  reluctantly agreed to have the surgery done tomorrow, November 30, at Memorial Hospital of Memorial Sloan-Kettering Cancer Center in Manhattan — the same place where I had my thyroid removed.

What pushed me over the edge was a consultation with a third MSKCC physician, Dr. Eric Sherman, a chemotherapy specialist, that took place on October 26. (Yes, my doctors triple-teamed me; and it worked.) There’s a possibility, I learned from him, that it may be wise to follow the surgery with either some mild radiation treatments — possibly a repeat of the radioactive-iodine pill I took following my thyroidectomy — or some chemotherapy, or both. Dr. Sherman was reassuring in predicting that the chemo I may receive will be nowhere near as potent as the R-CHOP regimen I underwent in 2006 for my non-Hodgkin lymphoma. He didn’t seem to think that either of those treatments will slow me down much. So, I’ll wait and see what recommendation emerges, after the pathologist has a look-see at my tissue samples, post-surgery.

Dr. Sherman also explained a detail to me that I somehow hadn’t picked up from what my other doctors had told me. There’s a sweet spot for lymph-node removal surgery: the nodes have to be big enough to remove easily, but not so large that they become enmeshed with other structures in the neck: that would make collateral damage harder to avoid. I’m in that sweet spot now. Were I to wait much longer, the possibility of limited arm motion or vocal-cord damage would be greater.

So, here I am, on the eve of surgery: fearful of post-operative pain, and anxious about waking up with a hoarse voice that may be more than the typical result of having been intubated in the operating room. They tell me I’ll be in the hospital for at least three nights following surgery, because I’ll have a drain implanted near the incision for that period of time. I’ve never had one of those before, so I don’t know what to expect.

The problem is, I’ve had a long time to think about this, to weigh the relative risks of watchful waiting vs. surgery. Had it been an emergency, I simply wouldn’t have had time to engage in second-guessing as I have.

In 48 hours or so, I suppose I’ll know a lot more.

August 9, 2017 — On the Back Burner

I’m overdue posting my latest news, but I’ve been away on vacation, then was occupied with re-entry tasks after returning.

On July 31st Claire and I drove two and a half hours down to Albany from our Adirondacks camp in Jay, boarded a train in Albany and headed into Manhattan. Our destination was Memorial Sloan-Kettering, where I had a long-standing appointment with my endocrinologist, Dr. Stephanie Fish.

Once our vacation plans had fallen into place, I’d tried to postpone the appointment so we wouldn’t have to travel so far. But when I learned that Dr. Fish’s next open appointment slot was in February — you heard it right, FEBRUARY — I cooked up our elaborate travel plan.

I’d had ultrasound testing at the time of my appointment with Dr. Boyle in June, and had gone to the new MSKCC satellite facility in Middletown, NJ for a blood draw just before we left for the North Country. So, this appointment was to hear Dr. Fish’s recommendation on whether or not surgery is called for, to remove the suspicious nodules in my thyroid bed and the lymph nodes on the left side of my neck that have yielded a positive biopsy for thyroid cancer.

Turns out, the answer is neither yes nor no, but “not yet.”

Dr. Fish observed that my thyroglobulin had gone from 1.0 ng/mL in June of 2016 to 5.7 in January, 2017. My latest July 21 blood work had it at 5.2, slightly lower. My June 5 ultrasounds showed no significant growth of the lymph nodes in my neck. The suspicious nodules in my thyroid bed are unchanged in size (these are the ones that could not be successfully biopsied with a needle because they’re too deep). Both my surgeon, Dr. Jay Boyle, and Dr. Fish concur that it's acceptable to continue the watch-and-wait.

Dr. Fish said they’d be willing to proceed with the lymph-node and nodule-removal surgery now if that’s something I want, but I told her I’m content to wait on that. She said she had been expecting — based on the January results — a steady climb in the thyroglobulin level, indicating rapidly advancing disease, but it does seem to have stalled for now.

I asked her what I could expect as far as how long the watch-and-wait strategy will continue, and she predicted I’ll probably need surgery within 2-5 years, depending on what happens to the thyroglobulin numbers. She said her greatest concern is the nodules, because - if they are indeed cancerous - they’re located in a place where, if they did start to grow, they could invade other structures in my neck, such as the larynx and esophagus. The lymph nodes on my neck, on the other hand, are close to the surface and would be less likely to impact other structures.

This whole experience is sort of like being stalked by a vicious sloth. We can see him coming, but there’s no particular hurry to get out of the way.

Bottom line: watch-and-wait continues. Surgery is on the back burner. Follow-up blood work and ultrasounds are scheduled for 6 months from now.

If I wasn’t such a veteran at receiving this sort of news,  I’d probably be consumed by anxiety. But I’ve been living with cancer for so long now, it’s not a new thought. Just more of the same.

After a dinner out with my sister-in-law Ramona in Manhattan, Claire and I bade each other farewell for the next week. I boarded an Amtrak train back to Albany, and she a NJ Transit train to our home on the Jersey Shore (she’d run out of vacation days and had to get back to work). I spent the next week getting our house ready for putting it out for rental on AirBnB: a new experiment for us.

June 5, 2017 — Keep Waiting, Keep Watching

I've just returned from Memorial Sloan-Kettering's satellite facility in Basking Ridge, New Jersey. I had a routine ultrasound followed by a consultation with my surgeon, Dr. Jay Boyle. Routine, yes, but - since I'd had a biopsy of a lymph node on the left side of my neck several months ago that revealed recurrent papillary thyroid cancer - I knew this would be a discussion about treatment options. They're also pretty certain that several small nodules that have been detected in my thyroid bed (where the thyroid used to be) are also cancerous, but those are too inaccessible for a needle biopsy.

I also knew that, because Dr. Boyle saw no need to move my appointment up after news of the biopsy results came in, this is a relatively slow-moving situation.

Bottom line is, we decided to continue watchful waiting for now. I'd told the nurse that was my preference, based on what I knew, and she told Dr. Boyle of my wishes before he came into the room. He's agreeable with that. He said that, as far as he's concerned, we could go either way. He did say that, if we decided on surgery, he'd recommend removing a whole lot of lymph nodes as well as the nodules in the thyroid bed, because it's not easy to keep going back in there and remove a lymph node here, a lymph node there. With each new surgery, there's more potential for damage to the tissues of the neck area. He said that, based on the location of the nodules, surgery would present about a 10% chance of permanent damage to the nerve that controls the vocal cords. I speak for a living, so permanent hoarseness and weakness of voice is not something I'd consider lightly.

I asked him where in the body thyroid cancer usually metastasizes to, and he said the lungs and the bones are the most common. In either of those cases, though, he said it's usually treatable with either further radioactive iodine treatments or beam radiation.

The ultrasound showed no change in the size of the thyroid-bed nodules, nor of the couple of abnormal lymph nodes they've been watching, but it did show a new, very small lymph node in the same area that also looks abnormal. The doctor said he could only barely feel any of those lymph nodes as he palpated my neck.

The other doctor who's involved with this decision is my MSKCC endocrinologist, Dr. Stephanie Fish. Dr. Boyle tried unsuccessfully to get Dr. Fish on the phone to find out why, exactly, she'd ordered the biopsy - because he said that, in his experience, when a doctor orders a lymph node biopsy, it's generally because surgery is a likely outcome (if it turns out there's a malignancy, of course). When I reminded him of my non-Hodgkin lymphoma history, he said that could explain it - there would be a need to determine which of my two kinds of cancer was causing the swelling in the lymph nodes. Different cancer, different treatment protocol. (We now know, of course, it’s the thyroid cancer that’s recurred, not the lymphoma.)

I see Dr. Fish on July 31st. They drew blood today that will provide her with thyroglobulin numbers and other crucial information she needs, prior to that appointment.

It's kind of nerve-wracking to wait all that time, and a little frustrating that the two doctors weren't on the same page prior to my arrival today. Dr. Boyle said he will talk to her, though, and I'm sure he'll call if there's any change.

I'm OK with this outcome. I'd rather not face another surgery at this time, if if can be avoided. With years of watchful waiting for my NHL behind me, I'm comfortable with the "don't shoot till you see the whites of their eyes" approach. Sure, I'll continue to live with uncertainty, but what else is new?

Today's appointment confirms for me how important it is to be go into such meetings well-informed, and to speak up about my own preferences as a patient. Some treatment decisions are less than clear-cut, clinically speaking, which leaves significant room for patient preference to be taken into consideration.

Next appointment with Dr. Boyle is in 6 months. As I've said, I see Dr. Fish in just under 2 months.

July 10, 2016 — Living Beyond

Last December, I wrote a blog entry acknowledging the tenth anniversary of my first cancer diagnosis. I dared to hope it could be a sort of capstone for this meandering project. Maybe I was finally out of the woods. Maybe ten years meant I was “cancer-free.”                                    
Recent events have proven otherwise. My December annual visit to Dr. Stephanie Fish, my endocrinologist at Memorial Sloan-Kettering, turned up some abnormalities in an ultrasound of my neck. Several tiny nodules had appeared in my thyroid bed — the area where the thyroid gland had once been — that looked worrisome.  Dr. Fish reassured me that it was too early to tell if this was significant, but arranged for me to come back for another ultrasound in six months.

I’ve now had that follow-up test. Dr. Fish informed me there are unmistakable “signs of disease” in the thyroid bed, as well as some swelling of nearby lymph nodes. The usual treatment for recurrent thyroid cancer, she explained, is further surgery. Because I already had a routine follow-up scheduled with Dr. Jay Boyle — my thyroid surgeon — she told me I should ask him what treatment options he recommends.

Last week, Claire and I drove up to the Memorial Sloan-Kettering satellite clinic in Basking Ridge, New Jersey to see Dr. Boyle. He confirmed everything Dr. Fish had told me. The thyroid cancer is back. The truth is, it probably never left me. He’d warned me back then that it’s difficult to surgically remove every microscopic bit of thyroid tissue. That’s the reason for the radioactive iodine treatment I’d had at the time: it’s a precautionary cleanup of the whole area. But it’s not always 100% effective.

As for the lymph-node involvement, he told me that was visible even at the time of my surgery, but is of no greater concern than the newly-appeared nodules.

Well, what’s ahead? A biopsy?

The nodules are too small to biopsy.

A further radioactive iodine treatment?

Not likely. That’s a one-time approach, much less effective on the second go-round.

What about further surgery?

The nodules, he explained, are still very tiny and are therefore hard to remove surgically. They’re also located in an inconvenient place, close to the nerve that controls my vocal cords. If I opt for surgery, there’s a 10% chance of permanent hoarseness as a side-effect. Dr. Boyle knows as well as I do that I make my living with my voice.           

As for the lymph nodes on the left side of my neck, they’re closer to the skin and therefore easier to remove, but that would require a large incision that would do damage to delicate neck tissue. Such an incision would make further surgery in that area — should it ever be required, down the road — problematic.

Better to postpone surgery, he advised. Thyroid cancer is typically slow-moving. At 59 years of age, I just may outlive it. If I do reach the point where surgery is indicated, it would be just as effective then as it would be now.

The treatment Dr. Boyle recommends is one that’s become familiar to me as a non-Hodgkin lymphoma survivor: watchful waiting. Dr. Fish has already ordered a follow-up ultrasound for six months from now. Dr. Boyle thinks that’s an appropriate precautionary step, but he doesn’t expect to see a big change.

A short while after our visit to Dr. Boyle, I had a conversation with a friend who’s a breast cancer survivor. She’s had a long series of surgeries and treatments. She, too, is not in any immediate danger, but her scans have revealed some recurrent disease.

My friend told me she’s stopped updating friends and family about every detail of her situation, because it’s hard for others to grasp what watchful waiting really means. “We’ll always have cancer,” she told me, frankly. “People who haven’t lived through it have a hard time understanding that. They don’t understand that the most aggressive treatment isn’t always the best choice.”

My situation exactly.

Recently I read a little article in Cure magazine by Mike Verano, a psychotherapist and cancer survivor. It’s called "Moving On After Cancer." Mike’s point is that few people are ever able to move on after cancer, to attain the much-heralded “closure.” Most cancers are simply not that sort of disease.

Mike has this to say:

“Thirty-plus years into the practice of psychotherapy, I’ve learned that telling someone that their recovery depends on ‘moving on’ is akin to telling a depressed person to just ‘be happy.’ My approach these days is to talk about living with rather than living without, allowing over forcing and, most importantly, realizing that life moves on in wellness and illness, joy and suffering, pleasure and pain. I firmly believe that illness does not halt this process; it does not put the brakes on existence. Feeling stuck comes from a trick of the mind that sees suffering, of any kind, as an unnecessary detour and waste of time.

Once we allow our lives to unfold with cancer as part of our experience, we awaken to the literal meaning of the word survive which is ‘to live beyond.’ This is the wisdom of being told that we become survivors on the day we receive our diagnosis. Thus, the need to discover the way ahead, to put psychological, emotional and spiritual distance between ourselves and the illness is already being met. Therefore, the work is often a matter of staying out of our own way as we move through this process.”

Survival as “living beyond”: I like that insight. It sounds positively theological. Jesus Christ says he has come that we “may have life, and have it abundantly.” It’s so very easy for us to ascribe to cancer the power to make this God-given life less abundant than it already is. Cancer has no such power.

We watch. We wait. We live. We love. We have cancer.

We live beyond.

April 30, 2014 — Bye, Bye Port

Personal lymphoma stories I can tell on this blog have been few and far between lately — which is a good thing — but today I passed a milestone of sorts: I had minor surgery to have my chemo port removed.

This was supposed to happen at the end of last summer, but I’d put it off for various reasons. Then, when I landed in the hospital last October with my pulmonary embolisms (and subsequent internal bleeding and kidney failure), there was no question of doing it then. Now that I’ve put that mess behind me and am off disability and back at work, it seemed the right time to do this.

The surgeon was Dr. Aron Gornish, the same doctor who’d put the port in seven years ago. He’d expressed some concern that the port had shifted recently and was in the wrong position (which, he thinks, probably happened when I was getting the temporary dialysis port put in). Fears of a complicated port-removal fortunately proved to be unfounded.  The port came out easily.

I'd been feeling a great deal of anxiety ahead of this procedure, and I’m not sure why. My worries focused around pain. I’m a veteran of four local-anesthetic surgical procedures — two bone-marrow biopsies and the installation and removal of the dialysis port — and felt pain with none of them. So, you’d think I would be cool, calm and collected about this one.

Not so. If anything, I was more nervous about this surgery, not less. I spoke to Claire about it this morning, through my bleary-eyed, insomniac haze. She thinks it’s because I know more (rather than less) now about what those procedures are like — how, when you’re conscious on the operating table, you just lie there, feeling like you’re right on the cusp of feeling or not feeling pain. You realize how close you are to a perfectly horrendous experience, and how it’s all in the surgeon’s hands whether or not you’ll soon be moaning and clenching your teeth.

Is knowledge truly power? Not in this instance, it seems.

I’d asked Dr. Gornish, several weeks ago, about whether I could expect to feel any pain. “That would depend on your pain threshold,” was his only reply. (Note to surgeons everywhere: this is not a wise thing to say to a patient asking that question, even though it may technically be true. You should talk instead about all the steps you methodically take, in the operating room, to avoid causing pain.)

I didn’t get much sleep last night, because I kept recalling the experience of the dialysis port insertion back when I was in the CCU, and how weird it felt to be lying there with a surgical drape over my face, feeling the tugging and pulling of the surgeon as he completed his mission. I couldn’t help thinking of what it would be like this time if I could feel the cut of the scalpel after all, and if I would jump when the hard little port with its tail of flexible tubing was pulled out through the incision. I imagined how helpless I would feel in that situation, but how the surgeon would have no choice but to forge on, since the procedure couldn’t be halted midstream.

Those fears were groundless. Except for the pinch of the first Lidocaine injections, I felt no pain. I could feel plenty of pressure, along with the predicable tugging and pulling. A number of times I could hear the hiss of the aerosol can of topically-applied Lidocaine, which Dr. Gornish picked up and used frequently. The operating-room nurse couldn’t be more solicitous, engaging me in small talk about our kids and my job, at what I assume were the most critical moments.

I was wearing a blood-pressure cuff and pulse oximeter throughout the procedure. The nurse remarked how, as soon as I’d heard Dr. Gornish say the port was out, my pulse and blood pressure dropped to a normal level. For sure, the body doesn't lie.

I’m home now, with a waterproof bandage covering the incision, under which (they tell me) are steri-strips and dissolving stitches. I’m supposed to keep icing it today, to avoid additional bleeding. I’m also told I have to be careful, when showering, not to get too much water on it, and am not supposed to do any upper-body exercising. Apart from those things, though, there are no special precautions.

I’ve been dreading the port-removal experience for the past six years or so, ever since I heard a fellow cancer support-group member tell of the agony she felt when her doctor just “yanked it out.” Was that a bit of hyperbole on her part, or was her surgeon not so thoughtful about the anesthetic? It doesn’t really matter. I’m just glad to have this experience behind me.

February 4, 2012 – More Surgery, Non-Cancer-Related

On Monday, I’ll be going into Ocean Medical Center for a long-postponed operation.  I could have had this done as long ago as last summer, but the surgery to remove my thyroid was more urgent, so this went onto the back burner.

For quite some time, I’ve been dealing with BPH, or benign prostatic hyperplasia – “benign enlargement of the prostate,” in everyday terms.  The word “benign” in that description needs to be emphasized: my PSA tests have all been normal, and there’s no reason to suspect any sort of malignancy.

The surgery I’ll be having is known as TURP, which stands for “transurethral resection of the prostate.”  According to my urologist, Dr. Daniel Burzon, it’s “the gold standard” in treating this condition: a long track record of success and a low likelihood of enduring side effects, even if the recovery from the surgery is a bit longer that some of the other alternatives.   I’ll spare you the somewhat grisly details of this procedure, Gentle Reader, but if you know how to access this blog, you’re probably very capable of doing a Wikipedia or Google search if you’re so inclined – and if you don’t mind some of the cringeworthy descriptions you’re likely to come across.

I’m supposed to show up at the hospital at 6:00 am on Monday for the surgery, and will stay there at least one night. I’m expected to be out of commission for the next week or so, and the doctor has told me I shouldn’t plan to lead worship on the following Sunday, because he doesn’t want me on my feet that long.

Since this is a cancer blog, I don’t expect to have much more to write about this experience in this space, beyond what I’m saying now.  Besides, given the nature of the surgery, I’m less inclined to comment about it publicly in any setting.  Because of my cancer history, though – and because of the fact that, to some minds, the words “prostate” and “cancer” seem to go together like peanut butter and jelly – I feel the need to get the information out there that I’m having this done, and that it’s in no way related to any malignancy.

July 1, 2011 - Biopsy Results and Follow-Up Plans

I’m writing this in Indianapolis. I’m here for a few days for the Presbyterian Church’s “Big Tent Conference,” a national training event.

In the rush to get packed and to the airport, I didn’t have time to report on my Wednesday afternoon follow-up consultation with Dr. Boyle, so I’m doing that now.

The news continues to be quite good. The doctor examined my surgery scar and says it’s healing well. The hardness of the tissue around the scar is normal, says he, and will diminish in time. He says I’ll probably always feel a certain tightness as I move my head up and down, or side-to-side, as do most patients who’ve had this surgery.

Dr. Boyle gave me a copy of the post-surgery biopsy report. It confirms the presence of cancer cells in both lobes of the thyroid, so total surgical removal was definitely the way to go. The report also identifies some cancer cells that were found in the fatty tissue that surrounds the thyroid, which isn’t all that unusual.

As for the pathology itself, my needle-biopsy diagnosis of papillary thyroid cancer was reaffirmed, with the further refinement that I have the “tall cell” variety of papillary cells. This is a somewhat more aggressive form of the papillary cancer.

Because of (1) the tall-cell diagnosis, (2) the concern about the cancer cells just outside the thyroid, (3) my age and (4) my male gender, Dr. Boyle is definitely recommending that I receive a single radioactive iodine treatment within the next 6 months. That treatment used to be nearly universally used as a follow-up for thyroidectomies, but now it’s thought that this procedure was over-prescribed in the past. Only certain patients now receive it, and those factors mentioned above make it essential in my case. Dr. Boyle says there’s no doubt about the advisability of going ahead with that, and who am I to disagree?

So, how concerned should I be about the tall-cell diagnosis? One paper I found online cites a study that found that the 5-year survival rate for tall-cell papillary thyroid cancer patients was 81.9%, as compared to 91.3% for ordinary papillary thyroid cancer patients. Those are still mighty good odds.

On Dr. Boyle’s recommendation, before leaving the Basking Ridge, New Jersey facility of MSKCC, I made an appointment to see Dr. Stephanie Fish, an MSKCC endocrinologist, on Friday, August 5. She’ll be the one who will oversee my radioactive iodine treatment.

As I understand it, that treatment involves some dietary restrictions before and after. As for the treatment itself, I’ll simply have to swallow a pill, which includes the radioactive substance that will make a beeline for any residual thyroid cells that may remain in my body, and zap ‘em. There are no side effects to speak of, although I’ll have to stay away from other people for a few days following the treatment, because of the radioactivity that will persist in my body.

Bottom line? There’s every reason to be confident that the combination of my total thyroidectomy with the radioactive iodine treatment that’s ahead of me will lead to a complete cure. The tall-cell variant is a concern, because it leads to a measurably higher risk, but the overall picture is still quite encouraging.

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.

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.

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.