vivisection [ˌvɪvɪˈsɛkʃən]
n.
the practice of cutting into or dissecting a living body, especially for the purpose of scientific research.
Thursday, November 28, 2013
A nice game for young sadists
vivisection [ˌvɪvɪˈsɛkʃən]
n.
the practice of cutting into or dissecting a living body, especially for the purpose of scientific research.
Tuesday, November 19, 2013
Crackfinger
Friday, November 8, 2013
men 2: The Tumourmaker, or, A Guide for the Fearful
Part 1: Is that a pheochromocytoma or are you just sweating with excitement to see me?
I was the hardiest person I knew. After outgrowing allergies and migraines in my teens, my health had been near optimal. I had no aches or pains and am apparently immune to chicken pox and influenza. My dad’s family is long lived and my genes seemed to be enviable. I’ve never smoked and, discounting university-student dissipation, drank only occasionally. Moreover, my frame has always been on the slim side of average, no matter what and how much I ate. It felt positively good to be alive. So good, in fact, that I hadn’t seen a doctor in decades and hence, my favourite dyslexic 007 villain was "No Doctor".
Then, about five years ago, at the age of forty (or perhaps earlier), I began to perspire—heavily and frequently, and often unaccountably. My shirts were oftentimes wet at the armpits and less commonly at my back and chest. This was accompanied by heat intolerance, the feeling of excessive body heat. Indeed, my wife described me as a furnace. I chalked it up to a combination of subconscious anxiety and physical inactivity.
A few years later, in early 2010, I tried my parents’ blood pressure monitor during a visit, mostly for amusement. Unexpectedly, my blood pressure was at the high end of normal. My parents then lent me the monitor (I later purchased my own electronic digital unit, an Omron® 7 Series™) and my mother, a retired RN, urged me to make an appointment with my family doctor, William Zingel (not his real name—the names of all physicians have been changed). When I saw him in May of that year, he took blood samples, had me provide urine, and arranged an electrocardiogram (ECG or EKG) at the quasi-private and often busy LifeLabs®, which has a location down the hall from his office. When he saw the ECG printout he furrowed his brow (I didn’t ask why) and sent me to the Branson site of NYGH (North York General Hospital) for an echocardiograph, an ultrasound of my heart (June 1). A few days later I underwent a renal (kidney) ultrasound at LifeLabs, possibly because trace amounts of blood in my urine had been discovered. I started measuring and logging my blood pressure and heart rate (which was also elevated). No medication was prescribed, and for more than a year all was quiet on the health front.
Incidentally, in the spring of 2011, I tried to donate blood at a local church. After spending three hours alternately waiting and going through other forms of red tape, I was ultimately—and unapologetically (a moral disease of our times)—turned away because of hypertension ("to protect your own health"). My advice for Canadian Blood Services is this: rather than waste a potential donor’s time, please inform him or her up front of this relatively common disqualifying condition, perhaps by including this information in the literature that is handed out to arriving would-be donors.
The surges started in August 2011. This was my term for unprecedented, brief, spontaneous episodes of what felt like pressure in my chest, lasting no longer than a minute. Despite being hit every day or so, I told no one about them—incredibly, because I knew something had to be wrong.
My stoic silence ended in the early hours of August 31. While climbing into bed I was struck by a surge that rapidly, unexpectedly—and horrifyingly—culminated in a fully-formed, excruciating headache—far worse than the migraines of my youth, which were themselves incapacitating. Never have I suffered agony of such magnitude. It was, without exaggeration, unbearable. I seem to recall that it commenced with a sort of popping sensation, but perhaps this was a palpable metaphor for the suddenness of the assault on my brain. During the onset there was also a curious sensation of sinking into the bed, likely an effect of my confusion and terror. The immediacy of the pain prevented analysis, neutralizing the concern that it was caused by a stroke or aneurysm. After about 30 to 60 minutes, the demon was gone.
A headache of this severity could not be ignored. As soon as Dr. Zingel’s office opened that morning I called for an appointment. He saw me within the hour, taking more blood and urine. He also requisitioned (i.e., ordered via a generic document) a 24-hour urine test. This is the collection of all urine excreted during a single day into a special plastic jug, often containing a preservative acid. The type of analysis to which my urine would be subjected necessitated that I avoid physical exertion, bananas, aspirin (acetylsalicylic acid), acetaminophen, vitamin C, and foods containing caffeine and chocolate during the collection and for the three days preceding it.
On September 2, I chanced to see an episode of The Investigators, a true-crime TV program I didn’t normally watch, about the case of Alan Chmurny, a chemist who used mercury to poison a female colleague. Strangely, the symptoms of mercury toxicity described on the broadcast resembled my own; an Internet search turned up this statement: "[T]he clinical presentation [of mercury poisoning] may resemble pheochromocytoma." This rather unwieldy term from the Greek for dusky chromaffin (colour-related) cell refers to a type of adrenal gland tumour.
Meanwhile, I was to suffer five more extreme headaches, plus five of the milder variety. All were at night and were immediately preceded by a surge. Bodily movement aggravated them (severity seemed to vary somewhat with heart rate), but motionlessness was impossible during the worst headaches: if I sat, I would constantly writhe in torment, and lying down was worse (perhaps related to gravity); thus, I usually chose to stand, braving the consequential heartbeat-induced spike from the exertion. Most such headaches were gone after five or six minutes. The longest-lasting, which was of the severe type, beset me after midnight on September 6; I got out of bed and ambled to the living room, closing doors behind me to avoid waking my wife. On the theory that music might help, I played my stereo at low volume. I took an Advil® (ibuprofin) about an hour after onset, but its efficacy was indeterminate. I remember moaning like an injured beast while babbling a nonsensical monologue in an attempt to distract myself. The ordeal lasted about two and a half hours, but the ache persisted in a milder, throbbing form throughout the rest of the day.
I was now living in terror of the next surge-delivered über-headache. The prospect of another such bout was intolerable, so I visited my doctor the same day (9/6) to see what could be done. When he saw the word pheochromocytoma written at the bottom of my page of blood pressure readings, he acknowledged harbouring the same suspicion. He gave me a small box of Coversyl Plus (perindopril erbumine 4 mg + Indapamide 1.25 mg) for blood pressure and recommended Aleve® (naproxen, an NSAID), one of the more potent non-prescription analgesics, for the headaches. Not convinced that Aleve would protect me from cranial hellfire, I phoned him later the same day and pleaded for something more potent; he prescribed the antidepressant nortriptyline. Though none of these drugs stopped the surges, I never suffered another acute headache. Their cessation was almost certainly due to the blood pressure medication, for I eventually discontinued nortriptyline—on doctor’s orders—and Aleve—on my own initiative after careful consideration—and replaced Coversyl Plus with a different hypertension remedy, Norvasc (amlodipine besylate)—again on doctor’s orders. The milder headaches persisted for another 18 days, until September 24, but the surges continued beyond that date.
At a family gathering for my sister’s birthday the same week, others noticed my sweating. My face was dripping and the room felt hot.
Diagnostic efforts continued apace. On September 13, I had an ultrasound examination of my pelvis and abdomen at LifeLabs. This was to discover the cause of microscopic hematuria (blood in the urine, but invisible to the naked eye), but none was found. Two days later, I had a CT scan of my brain at the Branson site of NYGH. Wearing my street clothes, I simply lay face-up on the padded table, which was then rolled into the centre of the large doughnut-shaped machine, like a Frenchman on a bascule being fed into the lunette of a guillotine.
The CT scan report ruled out "acute hydrocephalus, hemorrhage, shift, [and] definite cortical infarction [a form of stroke]", but mentioned an "extra-axial CSF [cerebrospinal fluid] density lesion", suspected to be an arachnoid cyst.
Consequently, an MRI of my brain was performed on the morning of October 1 at NYGH, eleven days after being requisitioned (its priority was marked "routine"). It was a Saturday, and my wife accompanied me for moral support. The entire procedure, from being called in from where we were waiting, took 50–60 minutes. In a small windowless room, I disrobed to my socks and underwear and put on a rear-opening hospital gown, string-belted trousers, and shapeless, soft, disposable slippers; my clothes were stowed in a locker and secured with a dial padlock (combination known to the attendant). In the same room, the attendant asked me various questions (already covered on the MRI requisition form), noting the answers on a clipboard, and had me sign a release. The room containing the machine (there are two at NYGH) is continuously filled with what sounds like the pleasant chirping of birds. I opted for earplugs, though the imaging process didn’t seem particularly loud. I already knew that the narrow MRI tube into which I would be inserted could be a problem for claustrophobics—though newer models have a larger internal radius—and that patients can arrange for sedation; for this reason, the subject is given a flexible bulb to hold which, when squeezed, signals the staff to stop the procedure and roll the table out of the tube. I found the close confines to be no problem whatsoever, even considering that, in addition, my head was in a sort of cradle, a strap had been passed across my forehead, and a cage-like antenna had been placed over my face. Thinking about this later, I reasoned that claustrophobia is probably dependent on the perception of the impossibility of escape. Lying comfortably, it was not difficult to remain perfectly motionless for the full 40 minutes of scanning. Midway through the procedure, I was rolled partly out of the tube so that a contrast medium could be injected into my arm. Overall, it was a very easy, interesting experience. Apprehension about MRI scanning thus seems unjustified. Later, I was happy to learn that the MRI scan confirmed the negative findings of the CT scan. Arachnoid cysts are usually of no concern.
On September 21, Dr. Zingel drew more blood and showed me the findings of my 24-hour urine analysis:
That all of these substances were significantly elevated pointed to pheochromocytoma (there’s that word again), a tumour of the adrenal medulla (the core of the adrenal gland) that releases excessive quantities of catecholamines, causing diaphoresis (profuse sweating), high blood pressure, tachycardia (rapid heartbeat), and headaches. My doctor and I hoped that these findings were somehow incorrect (e.g., that I hadn’t hewed properly to the dietary prohibitions of the test or that my medication had thrown the numbers off). Moreover, to confirm pheochromocytoma, a differential diagnosis would need to eliminate conditions with at least some of the same symptoms, such as anxiety attacks (which produce sweating and headaches), intracranial lesions, cluster headaches, and obstructive sleep apnea (which cause hypertension and nocturnal hypoxia, of which the latter can lead to excessive catecholamine secretion). The next day I drove my wife to York Central Hospital for minor surgery, and while waiting for her in the corridor I looked around at the staff, the patients, the gurneys, and other details, as if to familiarize and thus mentally prepare myself for a hospital stay in the near future.
In accordance with his suspicions, my doctor referred me to Dr. Ahmad Safa, an endocrinologist, whose main office is in a medical arts building on Leslie Street in North York (with scarce—but free—parking). Dr. Safa would go on to manage my case, a complex and time-consuming affair. A tireless worker, he was able to pull strings on my behalf, possibly saving my life (see below). Both he and Dr. Zingel would call me at home in the evenings, usually to report test findings, and otherwise go out of their way for me. When I first saw Dr. Safa on October 20, he took me off Coversyl Plus, replacing it with another blood pressure medication, Norvasc (amlodipine besylate). He started me at 2.5 mg/day (half a tablet, for which I obtained a pill splitter) and bade me visit Dr. Zingel four days later to verify that the dosage was correct (he then doubled it on November 11, and increased it further, to 7.5 mg, on November 29). Also on my initial visit, he had me undergo an ECG at the LifeLabs downstairs, and instructed me to obtain a 24-hour blood pressure monitor from a nearby cardiologist—though no unit was available until the next week.
The diagnostic testing continued at Dr. Safa’s behest. On October 26, he ordered more blood drawn for analysis (8 am serum cortisol, free T4, and serum calcium). LifeLabs was not equipped to analyze blood for chromogranin A, so that test was skipped. Some of these tests indicate that Dr. Safa was already thinking about my thyroid gland, but more about that later.
I picked up the 24-hour blood pressure monitor from the cardiologist’s office at Sheppard Avenue East, for which I paid $100 CAD, which oddly was not covered by OHIP, the Ontario government’s public (i.e., extortionate) health insurance scheme. After a long wait, which I suspected was because the technician in question, who didn’t seem very qualified, had arrived late, the device’s operation was explained to me before it was fastened to my person. Worn under the shirt, it consisted of a battery-powered recording/inflation pack attached to a waist-encircling belt; from it a narrow rubber tube ran up my back (to which it was taped) and down my left arm, where it noisily inflated an arm cuff every 30 minutes. That night (October 27–28) I slept on my back, with the device beside me on the floor, and was only able to doze off for a few hours due to its sudden and disruptive periodic operation.
I began another 24-hour urine collection on November 2, for analysis of fractionated metanephrines and catecholamines. That evening, Dr. Safa called me with the news that my ECG of October 20 showed "possible WPW" (Wolff-Parkinson-White syndrome), a cardiac condition that in rare cases causes sudden death—egad! Yet another (my third) 24-hour urine collection commenced the very next day, this time to gauge my creatinine (a measure of renal function) and cortisol levels.
Based on my ECG, Dr. Zingel ordered another 2D echocardiograph (cardiac ultrasound) on November 11, which was conducted three days later at NYGH’s Branson site. Dr. Quan Cong Trang, who also performed my earlier echocardiograph (June 1, 2010), told me at the end of the examination that there was no change in my heart function.
On November 17, I learned from Dr. Safa that, according to the urine analysis, my epinephrine, norepinephrine, normetanephrines, and metanephrines levels were again highly elevated, confirming the previous results (vanillylmandelic acid wasn’t assessed this time). Pheochromocytoma was now all but certain. Hence, I was to stop consuming caffeine, peppers, and bananas, and, in the event of a severe headache in conjunction with high blood pressure, was to go to hospital emergency, whereupon Dr. Safa would be paged automatically.
An abdominal MRI, ordered by Dr. Safa on November 1, was performed at NYGH on the 24th. No food or water was permitted four hours prior to the scan. I again donned hospital attire, and in another anteroom I lay upon a gurney while a saline lock (basically, a needle, a valve, and plastic tubing) was inserted into a vein and taped to my arm; this was to permit the introduction of a contrast agent after some initial images were taken. This was my first experience of squeamishness in this whole affair. Needles never really bothered me, but they’d never been left in my body, either. The idea was somewhat disturbing, and I was careful with that part of my arm to prevent the needle from being shoved where it wasn’t supposed to go (a concern which was actually unfounded). But, as I would repeatedly learn, a given medical procedure never turned out to be as harrowing as I had feared ("present fears are less than horrible imaginings")—an attitude which, unfortunately, wasn’t formulated until much later (being paradoxical in its strict form); in the meantime, I resolved to simply steel myself to whatever was coming. Once I was in the MRI machine, the saline lock was no longer an issue, for, being comfortable and motionless, I could scarcely feel it. Instead of earplugs (as with my first MRI), I wore headphones. The worst part of this MRI was having to hold my breath for periods of up to 40 seconds (by my estimate), not knowing when I would be allowed to exhale. On the way out of the radiology area, at a Dutch door in a main corridor, I asked for a copy of the images, including those from the earlier MRI of my brain, and a kindly woman burned a compact disk for me as I waited.
That evening I popped the CD into my laptop computer and viewed my innards. The supplied software allowed the selection of an image in one "pane" and a cross-section in another; on the selected image, the available cross-sections are marked with parallel dotted lines which are each clickable. I easily found the arachnoid cyst in my brain. I also saw what looked like a tumour perched atop my left adrenal gland. Was I looking at my pheochromocytoma, my tormenting demon?
I received a phone call from Dr. Safa the next evening (Friday, November 25). He asked me to come with my wife to his office the next day or Monday. Not wanting to wait any longer than necessary, I agreed to meet him on Saturday morning. My wife and I picked up Tim Hortons coffees en route. At his office, Dr. Safa informed us that the abdominal MRI indeed showed a pheochromocytoma ("heterogeneous large left adrenal mass measuring 6.2 × 4.7 × 4.6 cm", quoting the report), and that surgery was necessary to remove it. In the meantime, there was a risk of hypertensive crisis and perhaps rupture and hemorrhage, so I was to avoid strenuous physical activity. "No fighting", he commanded, to break the ice. I was also to begin taking phenoxybenzamine. A non-selective alpha-adrenergic antagonist (alpha-blocker), this drug suppresses the vasoconstriction effects of catecholamine secretion (i.e., it combats spiking blood pressure), important for the forthcoming surgery, when manipulation of the tumour was unavoidable and a hypertensive episode would otherwise be a danger. The dosage was to be increased gradually over a three-week period, so the date of the forthcoming operation was dependant on when I started taking the drug, and hence, when I could obtain it. Unfortunately, phenoxybenzamine was a "special access" drug, meaning that the government had prohibited its entry into the Canadian market; consequently it lacked a government Drug Information Number (DIN) and was only available by special request from the government, which might deny it to me. Dr. Safa advised me to inquire at various pharmacies in case one of them had a surplus from an earlier prescription. When we stepped out of his office, I expressed my relief to my wife about the diagnosis, for I had feared that the news would be worse, such as that the tumour had metastasized. In fact, pheochromocytomas are usually benign.
Phenoxybenzamine indeed proved elusive. Before we left the building, I inquired at the pharmacy there, but the pharmacist had never heard of the drug, and it didn’t appear in his computer system; he promised to look into it for me, but his efforts were unsuccessful. My calls to other pharmacies yielded only puzzlement, largely thanks to deliberate government obstructionism. On Monday, I dropped in on Dr. Zingel and we discussed my pheochromocytoma diagnosis. About my own research, he would quote Pope: "A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring. . . ." But the reason for the visit was to get his advice about obtaining phenoxybenzamine, the obscure, forbidden chemical. He called Dr. Safa regarding its availability, and then phoned a pharmacy (I believe), asking about this "nonexistent" drug, but with no positive result. While I was there, Dr. Safa called Dr. Zingel with the news that he was able to procure phenoxybenzamine and that I was to have another CT scan, this time of my neck and chest, to rule out tumours there.
The next day, November 29, I went to see Dr. Safa. The phenoxybenzamine would be delivered to NYGH’s inpatient pharmacy, which did not officially serve non-hospitalized patients. Dr. Safa had found a couple of candidate surgeons for me; one was Dr. Peters, who operated at NYGH and whom I was to meet the next day; the other worked out of St. Michael’s hospital in downtown Toronto. I then went downstairs to LifeLabs to yield more blood, this time for random glucose (random = no fasting required), creatinine, potassium, random serum calcium, PTH (parathyroid hormone), and serum calcitonin.
Dr. Todd Peters, a minimally-invasive and oncological surgeon, was a youngish chap. His confident manner quickly put me at ease. The surgery was tentatively scheduled for December 20, twenty days hence, but subject to my timely acquisition of phenoxybenzamine. He explained that the operation, an adrenalectomy (the tumour was located in the medulla of the left adrenal gland, requiring the removal of the gland itself), would be laparoscopic, involving four small incisions or ports. The only real risk was hemorrhage due to the proximity of the large renal vein and artery. Afterwards, I’d be placed in intensive care—rather than a recovery room—for continuous monitoring of my BP, necessary because of the radical drop in catecholamine secretion after extraction of the adrenal gland. I’d probably be out of the hospital in a day or two. Moreover, he assured me that my pheochromocytoma was almost certainly benign (i.e., not cancerous). My worries mostly evaporated at this initial meeting. The tumour’s removal would also cure me of hypertension and profuse sweating, and I would no longer be haunted by the fear of devastating cluster-like headaches. And because the remaining adrenal gland is entirely sufficient for the body’s needs, I wouldn’t even require supplements. I walked to my car with a light step, pleased to be able to alleviate my loved ones’ worries with what I had learned.
My shipment of phenoxybenzamine arrived the following day, December 1. Events could now be set into motion. I wandered through the hospital and found the inpatient pharmacy, located behind an unmarked, intercom-equipped, windowless door that was remotely unlocked from within. Like a Hollywood saloon in the Old West, everyone glanced at the interloper. Actually, the staff was friendly and helpful. The red 10 mg capsules, of which only 28 had been delivered, cost me $7.70 each, plus a $13 fee, for a total of $228.60. (Excluding the fee, the drug’s price per troy ounce was thus $23,947.00 CAD, or 13.5 times more expensive than gold, which was $1,770.50 CAD on the same date.) Because it lacked a DIN, phenoxybenzamine was not covered by my wife’s Manulife Financial drug plan. Armed with the white paper bag, I then walked the 600 m (approximately 2,000 feet) between the hospital and Dr. Peters’ office to personally inform him that I had taken possession of the drug (he didn’t want me to start taking it before this). Drenched in sweat on arrival (despite it being about 5°C), I told him he was witnessing "pheo" in action. He gave me a roll of paper towels and let me use one of his rooms to dry myself off. Inside, the perspiration dripped from my face onto the gleaming dark floor (I wiped it up).
A neck/chest CT scan at NYGH’s Branson site was scheduled for the next day. After being called from the outer waiting area, I was directed to a private cubicle where I exchanged my shirt for a hospital gown. After sitting in an inner waiting area for a few minutes, I was conducted into an office that adjoined the CT room, where I sat in a padded chair and chatted with a nurse (or technician—the distinction is not always clear). She asked me various routine questions, in response to which I mentioned my pheochromocytoma diagnosis; I’m not sure if the staff already knew this from the requisition. She was interested in how my condition came to be identified (as were other medical professionals I would meet: pheochromocytoma is well known in the literature, but rarely encountered; one doctor said I was a med-student’s dream). Being in a good mood, thanks to the meeting with Dr. Peters, I regaled her with the tale, including my self-diagnoses (i.e., pheochromocytoma via symptoms and later its identification in the MRI images). Another nurse/tech entered the room and informed us that the CT scan had just been canceled by a doctor who had been consulted by phone because of a potential reaction of pheochromocytoma to contrast dye, which the facility was ill-equipped to handle. It was suggested that the scan be performed at the hospital’s main location.
At his office later the same day, Dr. Safa told me to discontinue Norvasc, my blood pressure medication. Then he outlined a tentative phenoxybenzamine schedule, by which the dosage would increase every 3–4 days. As for diet, I was to consume large quantities of water and 5,000 mg of salt per day (the latter was easily accomplished with commercially-prepared instant noodle soup; the saltiest Mr. Noodles bowls contained 2,860 mg of sodium per full serving, which exceeds the recommended daily limit). Coffee, alcohol, spicy food, and strong cheese were to be avoided.
I took one phenoxybenzamine capsule (10 mg) per day, starting that night (actually after midnight on the third). The dosage doubled on December 7 (one capsule twice per day). Three days later it increased to one capsule three times per day, and starting on the 14th, I took 40 g per day (two capsules twice per day), a dosage that was maintained until the day of surgery, December 20. I took 47 capsules in all. As intended, the drug gradually reduced my blood pressure, which I measured twice a day (each measurement consisted of two readings, one while lying down and one immediately after standing—this was to make sure my BP was stable and that my dosage wasn’t excessive). I also saw Dr. Safa periodically so he could personally monitor my blood pressure and review my recorded readings. The only side effects I experienced were a stuffy nose and dry ejaculation.
On Dr. Safa’s recommendation I consulted Dr. Yvonne Beausoleil, another endocrinologist, at her downtown Toronto office in St. Michael's Hospital Health Centre, on Monday, December 5. There, I was quizzed, examined, and had my vital signs taken. She concurred with Dr. Safa’s phenoxybenzamine plan, and dispatched me to the busy ground-floor lab to have blood drawn for genetic testing.
On December 8, twelve days before surgery, I checked in at NYGH’s patient registration office (a routine precursor to the pre-op meeting), where I expressed my preference for a semi-private room (i.e., with one other bed), which was covered by my wife’s insurance, but otherwise cost $230/day. I then spent the late morning at the hospital’s Pre-Operative clinic, which is routine for patients scheduled for surgery. There, after a period in the waiting area, a nurse (Sharon) weighed me (about 180 lb. or 81.7 kg, up from the 172 lb. or 78 kg I weighed as late as October 25), took vital signs, asked questions about my completed questionnaire, explained what I was to expect, procured blood, and administered an ECG. Later, after sitting in an inner area that lacks seats for all the waiting patients, I was interviewed by a Dr. Raymond Chung, an anesthesiologist. Finally, I waited a third time before being interviewed by a medical resident brought in because of the rarity of my diagnosis, who then concisely and expertly summarized my entire case to a Dr. Roger Kim, who had later joined us. All three of us discussed the forthcoming operation. There was some concern about my heart ("possible WPW"), but Dr. Kim assured me it wasn’t life-threatening.
I picked up the rest of the phenoxybenzamine prescription (54 capsules, or $428.80, including fee) from the hospital on Friday, December 9.
December 11 marked the last of my adrenaline surges. The previous one had been six days earlier, two days after starting phenoxybenzamine. These final surges were very mild.
On Tuesday December 13, I made another trip to NYGH, this time to its Genetics Program offices. Clinical geneticist Dr. Penelope Rothman discussed the possibility that my pheochromocytoma had been inherited and that it might be symptomatic of the genetic disorders Von Hippel–Lindau disease (VHL) or multiple endocrine neoplasia type 2 (MEN 2).
Soon after arriving at his office towards the end of the same day (December 13), Dr. Safa handed me a one-page blood analysis report. My calcitonin, a hormone produced by C-cells of the thyroid gland, was highly elevated. At 441.5 ng/L, it was 52.6 times greater than the normal maximum of 8.4. The report continued: "Test repeated and results confirmed. . . . Results supporting a diagnosis of MCT [medullary C-cell carcinoma of the thyroid] includes [sic] a greater than 2 to 10 fold rise above the baseline calcitonin concentration. . . ." Dr. Safa asked for my thoughts, but I don’t remember my reply or what was going through my mind. I didn’t know at the time that the combination of medullary thyroid carcinoma and pheochromocytoma strongly suggested the genetic disorder MEN 2, which I hadn’t heard of until only a few hours earlier during my talk with Dr. Rothman. On the other hand, it was possible that the pheochromocytoma alone was responsible for my elevated calcitonin level. Both of us took the elevator down to the basement, to a lab called CML Healthcare, where Dr. Safa personally arranged for an immediate ultrasound of my throat, jumping ahead of some of the other patients.
I met a friend that night but said nothing about my situation. If, or when and how, I should inform my friends were questions I had been wrestling with. These thoughts were prompted by the death, several years earlier, of an acquaintance who had not informed anyone in our circle that he was ill, let alone terminally so. I respected him for his silence, for I imagined that he was afraid of "tainting" his remaining time with us with the grim knowledge, and being treated differently as a result. (On the other hand, he might have become ill suddenly and been unable to communicate with us.) My condition didn’t seem to be as serious, of course. I did elect to tell two close friends who came over on Friday, December 2 for a social visit. A larger group of friends were planning to gather on the 23rd, just before Christmas, and I thought I had a good chance of being able to join them, where the story could be told. I didn’t think telephoning, email, or social media were appropriate or adequate.
I didn’t learn the throat ultrasound results until the next day, December 14, when I motored to NYGH’s Branson site to verify the accuracy of my electronic home blood pressure monitor against Dr. Safa’s manual sphygmomanometer. He showed me the ultrasound report. Just as I had feared, "[t]here are multiple nodules [in] both sides of the thyroid. In the right lobe the two biggest nodules measured 1.4 cm, solid with calcification, and 1.2 cm; in the left lobe measuring 1.7 × 1.1 × 1 cm; it is solid with calcification. . . ." Both of these nodules had vascular blood flow. They would have to be biopsied, but Dr. Safa didn’t want me to worry about it in case it affected my blood pressure. (This advice was questionable, because I now had to worry about being worried.) Nonetheless, he requisitioned an urgent thyroid biopsy at NYGH, and asked me to phone NYGH’s ultrasound department to see if I could negotiate an early date. I called the next day, learning that ultrasound biopsies are performed only on Tuesdays and Thursdays and that I had been booked for 8:30 am on April 26, 2012 over four months in the future—though they said would reconsider the date after reviewing the results of my upcoming CT scan. There was also the possibility of getting in earlier due to a cancellation. Within a week, the hospital contacted me with a new biopsy date, January 5; somehow Dr. Safa, for whom even this date wasn’t soon enough, had intervened on my behalf. For this alone I might owe him my life.
(On the other hand, the biopsy might have been unnecessary or even hazardous, according to Medscape:
At 8:15 am, Friday, December 16, I was at NYGH for a neck/chest CT scan, rescheduled from two weeks earlier. While waiting, I chatted with the volunteer, an older gentleman from Scotland, about his world travels. I donned a hospital gown in a change cubicle before being led to a small office where a saline lock was inserted into my arm by a character of a nurse, who slapped my knees when he was amused (we sat facing each other). I confirmed with him, as Dr. Safa had instructed, that the contrast dye to be used was "pheo-friendly" (i.e., low-osmolar non-ionic); in fact, the CT people already knew about it, courtesy of Dr. Safa. I was then sent back to the CT waiting area. I was a bit self-conscious as I sat, exposed to traffic in the main corridor, clad in a goofy-looking gown with tubing in my arm; perhaps it’s strange, but I was uncomfortable looking like a "real" patient. After the scan, I delivered a copy of my December 13 neck ultrasound report to Dr. Zingel at his office, stopped at the LifeLabs in the same building to see about a blood test for chromogranin A (they too were unable to perform it), drove home, went to Dr. Safa’s Leslie Street office to pick up a prescription for the beta-blocker metoprolol and to have him check my blood pressure, drove to Christmas-crowded Costco (its dispensing fee is a competitive $3.89, even to non-members, vs. $10–$12 elsewhere) in an attempt to fill the metoprolol prescription (out of stock) and then to another pharmacy, returned home, traveled to see Dr. Safa again for a final BP check and to show him my own BP data, learned upon arriving home that Dr. Safa had called to inform me that I had left my laptop there, and drove back to the medical building on Leslie Street, for the third time that day, to retrieve my computer at the pharmacy to which he had entrusted it. My day was over when I arrived home at 6:50 pm.
On the Saturday before surgery, I started on the beta-blocker metoprolol, to further inhibit the effects of pheochromocytoma-induced catecholamine secretion, for adrenaline and noradrenaline operate by binding to α- and β- adrenergic receptors. Metoprolol, a β1-adrenergic antagonist, was much cheaper than its alpha-blocking counterpart phenoxybenzamine and more easily obtained. The 25-mg tablets had to be quartered, for I was to take 6.25 mg twice per day. My pill splitter wasn’t up to the task, but a utility knife sufficed. On Sunday, Dr. Safa phoned me to double the metoprolol dosage to half a tablet twice per day. On each of these last three days (Dec. 17–19), I drank 1.5 L of Gatorade® on Dr. Peters’ advice.
On Monday evening, my wife and I ate at our favorite steak house. It was my last meal, so to speak, for I was not permitted to eat or drink after midnight. I believe I slept well that night.
Part 2: This was supposed to be the winter of Steve
I awoke in a private ICU room on the sixth floor some nine hours later. The operation had been a success (I don’t remember how or when I learned this); my hypertension was cured, my sweating episodes were history, and severe headaches no longer threatened.
My ICU bed, worth tens of thousands of dollars according to a nurse, continually inflated and deflated at various points under me to prevent bed sores; I never had the presence of mind to calculate the inflation pattern. Several tubes now penetrated and emerged from bodily holes, both natural and man-made. A thin transparent oxygen line, which was looped around both ears, passed under my nose, where two short stubs jutted into my nostrils. I probably had an IV in my arm (can’t recall). An arterial catheter pierced my wrist to enable real-time monitoring of blood pressure. A central line had been stitched into my neck, whence it extended to my heart. A Foley catheter, with a bulb at its nether end inside my bladder, drained urine into a bedside plastic bag. Fortunately, it had been inserted during the operation while I was under general anesthesia. Also fortunately, it imparted no particular sensation—as long as it wasn’t tugged (ask me how I know)! None of the tubes were uncomfortable, nor were the four internally-sutured laparoscopic ports in my abdomen, through one of which my left adrenal gland had been bagged and extracted.
I don’t recall waking up, but soon afterwards an ECG was administered with a portable machine. This revealed, as Dr. Safa had suspected, that the recently-excised tumour had been responsible for the suspicion of WPW. A portable X-ray machine was wheeled in and aimed at my neck; this was to verify the placement of the central line vis-à-vis my heart.
My wife and parents came in at the first opportunity. During the surgery they had been waiting in the room with the flat-screen message board where I had left them; Dr. Peters had spoken with them there after the operation.
I was moved to another private ICU room. I must have slept at some point during the night, for I became aware of a black-shrouded gurney in the corridor (the intervening wall was glass) that wasn’t there before.
The next day, December 21, a nurse pulled the central line out of my neck. This was painless, though there was minor stinging when the sutures, which were very tight, were removed. My arterial line was also pulled out, also painless. In the evening I was wheeled out of the ICU to semi-private room 532N on the 5th-floor surgical-recovery ward, where I remained for the rest of my stay. My new bed, nearest the door, was decidedly less comfortable.
But greater misery was in store.
During the operation, my spleen, "which appeared to be quite enlarged" (surgeon’s operative report), had been torn iatrogenically, and there was a hematoma. Additional discomfort was caused by residual distension from the inflation of my abdomen with gas through a Veress needle during the surgery; because of this, the nurses frequently inquired whether I had been passing gas (hospital patients must be prepared to shift their threshold of dignity). En route to my new room on December 21 (the darkest day of the year), the gurney went over a pronounced seam in a doorway at full speed and the resulting jolt momentarily aggravated the pain in the left side of my abdomen. Unnecessary suffering was also caused by an inexplicably lengthy delay in receiving pain medication after my transfer from the ICU. Though pain medication (5 mg morphine bag intravenously) provided some relief, it could only be administered every four hours (the nurses weren’t permitted to alter this schedule regardless of my pleading) and its effects wore off early. That night (December 21–22) and the next was my worst time in hospital. I slept very little—if at all. I was alone, immobilized on my back (unable to turn onto my side or stomach), and usually in severe pain. All I could do was watch the hands of the wall clock crawl imperceptibly towards the next four-hour mark, when I would promptly push the call button for another dose. To make matters worse, the nurses didn’t always respond immediately. Sometimes there was a delay in actually obtaining the pain medication, causing needless suffering (I once waited an hour for Percocets after requesting them). But knowing I’d see my wife in the morning helped me through these dark hours.
On the afternoon of December 22, 2011, my nurse fed a tube into my stomach through my left nostril. This was likely because of postsurgical ileus (disruption of intestinal motility as a side effect of abdominal surgery). Thanks to my pronounced imagination, I am—or was at that time—particularly squeamish about invasive medical procedures. Yet I simply resigned myself to it, an attitude that was easier to attain than I might have predicted. Sometimes nervousness is a luxury of the imagination. The nasogastric (or NG) tube appeared alarmingly thick. I was instructed to swallow as the tube went down. This would help prevent it from slipping into a lung and also distracted me from the thought of gagging. The insertion procedure didn’t hurt but was somewhat unpleasant; the worst was when it reached the downward bend of my nasal passage, where there was a sort of ticklish sensation, the repellent effect of which was chiefly psychological. Once the tip passed this arch, the rest of the insertion was easy. The tube’s outer end was attached to a clear plastic canister mounted on the wall behind the bed. The apparatus used weak suction to gently remove my stomach contents, which were dark red because I hadn’t been eating. I could feel the presence of the tube in my throat when I swallowed, but this wasn’t upsetting. My dread had been largely unfounded. The next day I was given 40 mg of pantoprazole (intravenously), possibly to decrease gastric acid production caused by the NG tube.
I was up and walking on the same day, two days after the operation. For this, my catheter bag was tied to my IV stand (I had had a nurse tape the line to my thigh to help prevent tugging) and the NG tube was disconnected from the wall-mounted collection canister and clipped to my gown. I used my mum and the IV stand for support, though I could stand on my own. I would continue to walk at least once a day, usually to the amply-windowed elevator area at the end of the corridor. Room 532’s washroom was just large enough to accommodate the wide base of an IV stand; I wondered why space was apparently at such a premium considering that the hospital is adjacent to parkland and presumably could have been built or extended over more acreage and/or with more storeys.
Shirley, a physiotherapy nurse, visited me the next day and brought me a spirometer, a plastic device for strengthening lung function. I would seal my lips around the mouthpiece and inhale as hard as I could; airflow was measured by how many and how far each of the three spheres rose in their respective cylinders. I would announce my results as the number of balls I had sucked.
Doctors Safa and Zingel visited me separately throughout my stay. One of my ICU nurses came to see me, too. Dr. Peters, the surgeon, also made bedside visits. On the 23rd, he authorized an increase in morphine dosage from 5 mg to 10, and also put me on Toradol (ketorolac), a NSAID used to treat acute pain, every six hours. After this, everything changed. I was now virtually pain-free. A horrible chapter had ended. My roommate, a middle-aged father surnamed Lowry who’d had more than a foot (30 cm) of his colon removed on the 21st, told me he noticed the change in me; he knew I’d been suffering, and probably heard my groans.
Lowry and I would converse from our respective beds. When we passed each other in the doorway one day, he declared, "so that’s what you look like standing up." As a joke, I challenged him to a race to see who would go home first; by amazing coincidence, we left within minutes of each other.
The NG tube was removed on Christmas Eve. Two Percocet (oxycodone and acetaminophen) tablets every four hours replaced intravenous morphine. Toradol was continued until Christmas morning. Dr. Clark Leiter, the hospital’s Chief of Surgery, said I would be discharged in the next few days, provided that I was able to eat. My urinary catheter was removed just before noon on Christmas; it was replaced with a plastic jug with an angled neck, perfect for urinating in bed (every man should have one).
At lunch on Boxing Day, I ate half an egg-salad sandwich and some garden salad with Italian dressing—my first solid food since the operation, six days earlier. Nonetheless, my appetite was nonexistent—which didn’t mean I was neutral on the subject. Rather, I was positively averse to eating and thus had to force myself; the half-sandwich took an hour to consume. At the same time, I drank my first coffee in a month; beverages were not a problem. My saline lock and IV line were removed and my wife took me to the nearby shower room to wash (the shower head is attached to the hose with no provision for mounting it to the wall, so patients showering alone have only one free hand). For supper I had half an omelet and a bowl of soup. Dr. Zahara Anwar discharged me at noon on the 27th, with a prescription for 20 Percocets and a stool softener, Soflax (docusate sodium). Despite the good people therein, I was happy to see the hospital disappear through the rear window of my wife’s car.
At home, my wife made sure I ate something at every mealtime, to which I didn’t look forward. My repugnance to food was not unlike that of a person who has just consumed a very large meal. Soup and fruit were somewhat palatable, and I drank a bottle of Ensure® or Boost® on most days. Otherwise, all I did was sleep and watch television—and monitor the clock in anticipation of my next Percocet. Apart from the painkillers, a measure of relief was obtained by sitting forward with my elbows on my knees. Uncharacteristically, I didn’t read or touch a computer, let alone answer my growing email backlog. I tried the spirometer regularly, but my lung power remained deficient and my breathing was shallow. I’m not one to complain, but life was miserable.
My Percocet supply ran out by Friday, December 30, three days after my hospital discharge. Pain from my splenic hematoma was increasing, and, combined with my general weakness, getting out of bed was a chore. I would systematically maneuver my feet over the side of the bed and work my courage to sit up, a process which strained my abdominal muscles (located near my trauma site). Worse, any exertion brought on a new, acute stabbing pain in my lower left side, which prompted me to see Dr. Zingel. My wife drove me to his office on Friday afternoon. When he had me lie back on his examining table, the resultant agony precipitated short, rapid breaths, a condition he termed splinting. He advised me to go to hospital emergency, and handed me a note describing my situation along with some supporting reports to give to emergency staff. Back at the car, I discovered that holding my breath during exertion prevented the pain—except when leaning back.
My wife and I arrived at NYGH’s crowded emergency department at about 3:30 pm. Despite my own condition, I empathized with a teenage girl clearly in pain, who, with her parents, were also subjected to a long wait; we later overheard that she had been diagnosed with appendicitis by emergency personnel and would require surgery. Hours later, after waiting in three different areas (not as easy when weakened), I was given 6 mg of morphine via an IV in a curtained treatment alcove. I remember crying out in pain while being helped by an emergency doctor to recline on the gurney—this shocked and even embarrassed me. I was taken to radiology for X-rays of my chest and abdomen at 9:30 pm. According to the resultant report, I had "small to moderate sized left pleural effusion" (fluid around lung); "atelectatic [pertaining to collapse of alveolar lung tissue] changes … in the left lower lobe with obscuration of left hemidiaphragm [left half of diaphragm] and air bronchograms … in the retrocardiac location [behind the heart]". I was re-admitted as an inpatient, but didn’t get a bed until late at night; weeks later, a nurse in another department told me there was an unusually large influx of patients on that date. My new room was the semi-private 508, across the main corridor from my previous quarters. This time my bed was nearest the window. As a returning patient, I was subject to a disease-screening routine for which I had to provide nostril and anal swabs. Blood was taken several times per day, even after midnight. I was given single Percocets and Soflax capsules.
I drank a cup of Telebrix® and water the next morning in preparation for an abdominal CT scan at noon, to which I was taken on a gurney. I had to be helped onto the gurney, the CT table, back onto the gurney, and finally into my bed. This assistance consisted of full upper-body support while I reclined from the waist, without which I would experience the now-familiar stabbing pain. For the scan itself, contrast fluid was introduced into my veins and I had to hold my breath for up to twenty seconds; this was trying given my lung-related condition. Soon after getting back to my room, my nurse confronted me with a new horror: an injection of blood thinner into my right side in order to help prevent bedsores. I braced myself as she pinched abdominal fat and inserted the short, thin needle—but to my surprise there was virtually no pain. I would have one of these injections every day at noon. For lunch I had applesauce, my first food in 36 hours. A Dr. Hiroki Kosugi came to report the CT findings during the afternoon: mild pleural effusion of my left lung. There was a "mild amount of subphrenic perisplenic fluid", "left lower lobe atelectasis and consolidation, [which] appears complete", "mild [to] moderate subsegmental atelectasis [in the] right base", and "small [to] moderate amount of fluid tracking into the pelvis and right paracolic gutter [space between ascending colon and abdominal wall]" (CT scan report). According to my discharge summary (Dr. Maltinsky, Jan. 3, 2012), the scan also "showed a phlegmon [purulent inflammation] in the upper left quadrant [the area containing the spleen] that was not organized and no drainable collections were identified". In the early evening, I had my first bowel movement since before the surgery eleven days earlier; the nurses had been concerned, for general anesthesia suppresses bowel motility. It was a magnificent specimen, I proudly announced. Later I was given antibiotics to combat possible abdominal infection.
The next morning, the first day of 2012, Dr. George Maltinsky, who was in charge of the floor, came to my bedside and explained that my diaphragm had likely been irritated and that fluid had collected in my abdomen and around my left lung (pleural effusion). He advised me to use my spirometer ten times each hour, eat, and be as physically active as possible. My wife helped me shower at noon. Chest X-rays were taken at 4:30 pm; I had to lie on a metal table for one of the images, for which I needed assistance. The technicians were understanding and kind. These images showed that I had a "persisting small to moderate" collection of fluid in my left chest cavity, "associated with a collapse of the left lower lobe [of the lung] … with areas of subsegmental atelectasis [which has] progressed [since December 20]" (X-ray report), confirming the pleural effusion diagnosis from the previous day.
Dr. Maltinsky returned to my room the next day. After conferring with Dr. Nasir Jebali of the radiology department, it had been concluded that the fluid in my chest should be drained, a procedure termed thoracentesis. Accordingly, I was wheeled on a gurney to the interventional radiology department, accompanied my wife. While parked in the corridor, a friendly nurse/technician explained the procedure in greater detail and answered my questions. There was a risk of lung collapse, the prospect of which terrified me, thanks to my unruly imagination. Moreover, the very idea of a needle being inserted between my ribs and through to my lung certainly didn’t seem like fun. My wife was not allowed to be present. I was wheeled thus alone through the adjacent door into a room that was mostly occupied by a large X-ray apparatus. I rose from my gurney and was made to sit in the middle of the long side of another gurney with my feet on a footrest; I leaned slightly forward and rested my arms on pillows that had been placed on the end of an elevated X-ray table that was perpendicular to the gurney. My back was then uncovered. The strains of "Ballroom Blitz" by Sweet floated in from the adjoining office, a comforting reminder of the mundane. Dr. Jebali used ultrasound to locate the fluid surrounding my left lung. Strangely, there was little to be found, and to my relief the thoracentesis was aborted. Once again aboard my gurney in the corridor, and while waiting to be transported to my room, my wife and I chatted with the nurse. I mentioned to her that couldn’t remember the exact date of my looming thyroid biopsy. She checked and said it had been cancelled; this gave us hope that my elevated serum calcitonin level had been caused by the recently-excised pheochromocytoma, a realistic possibility, and hence that thyroid cancer had been ruled out.
During this, my second, hospital stay, my room was shared first by a friendly, polite young man, who was discharged on Sunday (January 1), and then by an elderly Russian gentleman, a distinguished engineer in his day, but who was now suffering from a painful bladder stone and dementia (requiring that he be continuously restrained to his bed); his legs previously had been amputated due to diabetes. All this I overheard through the intervening curtain—I had little choice in the matter. Remarkably, I soon ceased to notice his near-continuous quasi-Russian ranting, babbling, and the sounds of his struggles. His omnipresent family was loving, dedicated, and protective—and considerate: one member walked around the curtain to apologize to me for his disruptive behaviour; I assured her—truthfully—that I wasn’t bothered. During this stay, my wife gave me an Android smartphone, which was useful for my situation, for the landline phone at each bed participated in the room’s party line. We exchanged text messages when we were separated by the night. Also useful was my laptop computer; I used it with headphones to listen to music at night (great for my spirits), and my wife and I used it to watch DVD movies that she brought, such as Collateral and Ridley Scott’s Robin Hood.
To reach the bathroom or to leave the room, I had to move past my roommate’s bed, which was segregated from my own at all times by a drawn curtain. On Monday or Tuesday, I held my breath while leaving the room, for the old man’s half had become pervaded with a sweet but repulsive odour. Nonetheless, the effort started me to retching anyway. Mysteriously, my wife could not detect it, and I’m not sure if anyone else noticed it, either. Perhaps it was in my head, an incredible olfactory illusion. But the retching on this and future occasions was real. For the next three or four weeks, I would spontaneously retch, usually several times per day, though never actually vomiting. I could detect no pattern in its incidence, and eventually concluded that it was at least partly, if not wholly, psychological.
I was discharged in the late afternoon of Tuesday, January 3 by a Dr. Jamini Sapru, on condition that I see Dr. Peters when he returned from vacation the following week. And because I had already reported to the hospital’s emergency department, she trusted me as an outpatient to do the right thing should problems arise. I was supplied with two antibiotic prescriptions: four capsules of metronidazole (500 mg) and four tablets of ciprofloxacin (500 mg), each to be taken every twelve hours. Once again I sat in a cushioned chair in the main lobby, which faced away from the tall outer windows (making it difficult for patients to watch for their rides), while my wife brought her car around, and again I silently bid adieu to the hospital with its tall smokestack, bordered on three sides by busy roads and on the fourth by the Don River, peacefully nestled in a wooded ravine.
The next day I weighed myself at home: 169.0 pounds, 11 less than my pre-operative mass. Later, my wife drove me to see Dr. Safa at NYGH’s Branson site for matters relating to my forthcoming thyroid biopsy, which was scheduled for the next day. (Its earlier cancellation had been a mistake.) My energy level was severely depleted, causing me to walk very slowly, and I retched in the main entranceway. I sat in a chair just past the "urgent care" department for a minute, and then we walked to the cafeteria a little further on, where I rested while my wife got a coffee and sat beside me. We then proceeded to the small office in the Diabetes Education Centre where Dr. Safa councils patients. He was with a patient, so we waited in chairs in the corridor; I was so drained that I had to lean over. Although Dr. Safa had personally delivered to me, on Monday while I was in hospital, a typed letter addressed to the ultrasound biopsy team directing them to stain the cell sample a certain way, he wanted me to directly remind them of his instructions. Seeing my wilted state, he also took my blood pressure; it was 80 over 50—quite low. Consequently, he filled out a form explaining my situation and requesting that I be intravenously administered two consecutive bags of saline solution, and sent me downstairs with it to "urgent care" (a sort of light-duty emergency department). I registered there and waited for an hour or longer, lolling on the seat and sometimes leaning forward, sometimes leaning back with my legs stretched out, my head frequently on my wife’s shoulder. Finally, we were admitted into the inner area and taken to a treatment room. Lacking the energy to sit, I decided to lie on the gurney, and feeling cold, had my wife cover me with a blanket. After another wait, and a phone call to Dr. Safa when the initial nurse balked at being commanded by Dr. Safa’s treatment directions in the absence of confirmation by a Branson doctor, but who wanted to start a saline IV anyway (somewhat in the vein of Kafka), a kindly nurse named Ingrid arrived and got the job done. The saline solution felt cool as it flowed into my veins, and after two bags I did regain some energy. A Dr. Brian Larkin came in to talk to me and ordered chest X-rays, which were taken in a room down the hall, deeper in the urgent care complex (and past a gurney with restraining straps—scary). After more waiting, in a different set of chairs, during which my vitality began to ebb again, the doctor came over and reported his findings, which were that I had some fluid around my left lung. By the time we left the facility, it was dark and I felt that my time to relax at home before the next day’s biopsy had been compromised. As we drove home along Finch Avenue East, I experienced another retching episode, and, thinking I was going to vomit (a dreadful possibility for a guy who believes that one must never so much as touch someone else’s car, let alone soil the interior), had my wife pull over onto a side street (likely Dudley Avenue); fortunately, I kept my stomach contents where they belonged, which also prevented further dehydration.
We were both at NYGH the next morning for my fine-needle aspiration (FNA) thyroid biopsy. Actually, there were to be two: one for each nodule on my thyroid gland. We were just getting comfortable in the ultrasound waiting area when a nurse called me away to a nearby room. It was medium-sized with a gurney placed diagonally in the centre; an ultrasound machine stood on the other side of the gurney, closer to the head end, identified as such by a pillow. I was asked to remove my shirt and put on the standard hospital gown that had been sitting, folded, on top of the gurney. She then explained the procedure; the risks, mainly consisting of infection, were negligible, though I might suffer bruising. In reviewing my notes the night before to verify the appointment details, I saw that I was supposed to avoid blood thinners (plus Aspirin® and Advil®) during the five days prior to the biopsy—but I had been given daily blood thinner injections during my most recent hospitalization, which had ended only two days earlier. When I mentioned this to the nurse (I wanted to be on the safe side), she left the room to find out which blood thinner had been administered and whether it would jeopardize the procedure. As nervous as I was about the biopsy experience itself, which I had been dreading, perhaps childishly, all through the preceding three-week period, I was now more afraid that if the nodules were indeed cancerous, a cancellation of the procedure and its rebooking into the far future would risk metastasis and possibly my life—and needlessly, for shortages are only endemic to services that are monopolized by the state, and not only does health care not intrinsically require state involvement, but it is compromised by it. This worry proved groundless, for the nurse returned with the good news that the biopsy would proceed, for the blood thinner I had been given would not adversely affect it. I was instructed to lie on my back on the gurney, a still-uncomfortable maneuver given my condition at the time, but no longer agonizing. Soon a Dr. James Eliade and a cytotechnologist arrived. I mentioned Dr. Safa’s written staining instructions, but they had already been informed about it. The doctor, the nurse, and the cytotechnologist, who would be examining the cells with a microscope during the procedure to ascertain whether each extracted tissue sample was sufficient, were all friendly and helped to put me at ease. Nevertheless, I closed my eyes during the procedure, not wanting to see the various needles or catch a glimpse of the proper red stuff. I believe my throat was swabbed with an antiseptic. I felt a pinch from the needle delivering the local anesthetic (2% lidocaine without epinephrine)—not painful. And then the hollow biopsy needle, which the doctor explained was of the finest gauge (25), guided by ultrasound, went in; this wasn’t painful either, but did produce a sensation of mild pressure. After a few minutes, during which the needle was withdrawn and reinserted several times, and which was interwoven with conversation between them and me and technical talk amongst them, an adequate sample was obtained. Then, the entire procedure was repeated for the nodule on the left side of my throat. The doctor remarked that I was uncommonly stoic; the perfect patient. My throat was then covered with a dressing, everybody left the room, and I changed back into my shirt in privacy. Far from being a horrifying experience, I remember being in good spirits. My wife then drove me home. There were no after effects, and the whole thing was quite easy, if not slightly unpleasant: the feeling of pressure attending the manipulation of the biopsy needle was uncomfortable, but was far from living up to the dread conjured up by my imagination. FNA, indeed.
The office of Dr. Dwight Lyon, a specialist in otolaryngology (head and neck surgery, sometimes referred to as ENT for ear, nose, and throat), called me at home the next day (January 6) to schedule an appointment for the following week to discuss the biopsy results.
An alarming new pain sometimes greeted me after sitting up at my bedside. It was sharp and seemed to grip my heart, causing me to pause until it vanished, 5 to 10 seconds later. On Monday, January 9, my dad picked me up (my wife was back to work) and drove me to Dr. Zingel, who took blood, sent me down the hall to a LifeLabs to deliver the blood vials and to undergo an ECG for my chest pains (negative), directed me to another facility in the building for chest X-rays for my pleural effusion (fluid collection observed), and prescribed 30 more Percocets (these were 5 mg oxycodone hydrochloride and 325 mg acetaminophen; not sure what the previous prescriptions were for, as I’ve lost the earlier bottles). My dad drove me to see Dr. Peters at his Sheppard Avenue East office the next day to follow-up on my pleural effusion and to fulfill my promise to Dr. Sapru, who was also present. Dr. Peters arranged for a CT scan of my chest for the following week. My mass was 165 lb. (74.8 kg) the next day.
My wife took me to NYGH’s Branson site on Thursday, January 12 to meet with Dr. Lyon. As suspected, the biopsy had revealed that I had medullary thyroid carcinoma, which was an "aggressive" disease with a poor prognosis. It was likely that I had MEN, probably Type 2. Fortunately, the tumours were small and had been detected early. My thyroid gland would have to be removed, along with nearby lymph nodes and probably all four parathyroid glands (small endocrine glands, which regulate calcium levels, usually located near the thyroid gland). I would have to be monitored via blood and ultrasound tests for endocrine tumours for the rest of my life and would require lifelong thyroid hormone (levothyroxine) replacement therapy; I might need calcium replacement therapy. He said he would refer me to a surgeon based on earliest availability, mentioning doctors at Mount Sinai Hospital and Sunnybrook Hospital, both in Toronto. I would be kept for 2–3 days after the operation, to monitor my calcium levels, and recovery would take 2–3 weeks. He also discussed the risks, which were bleeding, infection, and a greater than 1% probability of damage to nerves associated with my throat, shoulder, and tongue. I wasn’t sure if I was healthy enough to withstand another major operation so soon, but understood that delay was hazardous to my survival.
A finding of the surgical pathology report (dated January 4), as revealed to my wife and me by Dr. Safa on Friday at his office, was that my pheochromocytoma had demonstrated "focal capsule invasion into periadrenal fat and [was] extending very close to margin" and that "[s]everal histological features associated with malignancy were seen and include capsule invasion with extension into adipose tissue [fat] (focal and limited), and focal areas of diffuse growth, large nests and tumour spindling. No definite vascular invasion was seen. The diagnosis of malignancy requires demonstration of metastatic disease. Clinical correlation is required". Thus, he wanted me to see Dr. Stefania Maklakiewicz, a medical oncologist at Toronto’s Princess Margaret Cancer Centre hospital. Furthermore, he said, my nemesis was probably multiple endocrine neoplasia (MEN) Type 2A, which is usually hereditary, making predictive genetic testing advisable for my parents and sister.
The next three days were spent quietly at home, watching television, ingesting Percocets (one every seven hours or so), and forcing myself to eat. Lacking my normal strength, I rushed my showers, and would often start retching by the end of them.
My dad chauffeured me to the next CT scan, of my chest, abdomen, and pelvis—to monitor my ongoing pleural effusion—on the morning of January 17 at NYGH. Because contrast dye was used, a saline lock was inserted beforehand—no longer a concern in light of recent events. During the scan I struggled to avoid retching. Afterwards, the saline lock was removed and I was given a glass of juice to help flush the contrast dye from my kidneys. My wife joined my dad and me to await Dr. Peters’ assessment of the scan results, which were that my pleural fluid level had increased. I was then taken away to the same room as before to have it drained by Dr. Jebali. This time the thoracentesis went ahead. Ultrasound was used to identify the precise location of the fluid collection. Then, the skin of my back was wiped with antiseptic. I don’t remember if a topical anesthetic was applied, but the left side of my back was injected with a local anesthetic. This caused a mild pinching sensation only. My back was covered with a drape that had a hole for the target area. A hollow needle was then inserted between two ribs and into the pleural cavity surrounding my left lung. I was afraid that the anesthetic might not be effective where the needle penetrated furthest, but my fears were baseless; there was a mild sensation, but it wasn’t pain. The needle/catheter was attached to a tube, permitting the pleural fluid, which looked like foamy ale, to drain into a jar placed beside me. Dr. Jebali left the room and I chatted with a nurse who stayed with me and replaced the jar when it filled. After about five minutes, I reported feeling an ache in my left shoulder (a referred pain) and the nurse immediately withdrew the catheter and applied a dressing. Although 1.2 litres had been drained, I didn’t feel any relief. In fact, my discomfort increased. I had another retching fit on the way out of the hospital.
But the day wasn’t over. My wife took over chauffeur duties from my dad for my early afternoon meeting with Dr. Sanjib Kumar at NYGH’s Branson site, where he shares office space with Dr. Lyon, the referring doctor. Dr. Kumar has a youthful appearance and is indeed quite young, having become an otolaryngology specialist (Clinical Fellow) in June 2009, scarcely two and a half years previously. On the other hand, he specializes in oncology, and had already accumulated considerable field experience. He told us that medullary thyroid carcinoma (MTC) caused by MEN 2A spreads easily and tends to recur. He would be performing a total thyroidectomy via an 8-cm (3.15-inch) incision, with removal of neighbouring lymph nodes. My parathyroid glands appeared to be disease-free (my calcium and parathyroid hormone levels were normal) and he didn’t believe in removing them prophylactically (10%–20% of MEN 2A patients suffer primary hyperparathyroidism), but would consult the tumour board for guidance. If they were to be removed after all, one might be implanted into my forearm; this to permit easy removal with local anesthetic should hyperparathyroidism subsequently occur. An autotransplanted parathyroid gland would grow blood vessels and probably begin functioning after several months. No chemo- or radiotherapy would be necessary after the surgery, but I would be hospitalized for 2–3 days afterwards, mirroring Dr. Lyon’s estimate, until my calcium levels were evaluated. The surgery was tentatively scheduled for February 6, twenty days hence.
My wife took notes while the doctor spoke; in my condition, I was not quite able to understand the case for leaving my parathyroids intact. Dr. Kumar then directed me to the dental-style ENT chair in the corner and started feeling my neck—which caused a retching spell. I called for a bucket, but didn’t vomit. Dr. Kumar next inquired if Dr. Lyon had looked at my vocal cords. In response to my negative answer, he produced a flexible fibreoptic laryngoscope, a black, handheld device with a long thin wire, and announced that he was going to insert it into my nose and down my throat. Although the NG tube, which was pushed along the same pathway only 26 days earlier, was fatter and extended all the way to my stomach, I must have forgotten about it, for I was now seized by horror—did I mention I was body-squeamish? But first he sprayed an anesthetic into my nostril and told me to sniff it deeper into my nasal passage. My wife gripped my hand, and as the laryngoscope went in, I recoiled against the headrest. But it was only mildly unpleasant, and in retrospect nothing to get upset about; sometimes the mind is the prime antagonist. With the laryngoscope in my throat, Dr. Kumar examined my vocal cords as I used them to make sounds like, "ahhhh".
Three days later, on Friday, January 20, my dad picked me up and drove me to my family physician, Dr. Zingel. I was sent down the hall for another chest X-ray. To our dismay, there was more fluid surrounding my left lung now than before Tuesday’s thoracentesis. This time I was able to see the images, but because they couldn’t be digitally transmitted, Dr. Zingel made me a pen-and-paper sketch instead, and again advised me to go to emergency. I remember sitting beside my dad in the doctor’s waiting room, sipping from a can of iced tea that Dee, his receptionist, had provided out of compassion (I was probably slumped in my seat), which at that time was delicious.
My dad and I arrived at NYGH’s emergency department at 1:40 pm. Twenty minutes later I was given an ECG in a small room near the triage desk, and then sent back to the main waiting area. Soon I was led to a treatment alcove in the inner emergency area, accompanied by my dad; my wife eventually joined us there. Sitting upright on the gurney was difficult, so we raised the head end and my wife helped me lie back on it. A nurse arrived to insert a saline lock and take blood, but after a few pokes she summoned a colleague, who also failed. A third nurse succeeded in getting blood. I was attended by a Dr. Bruce Lakatos, a Dr. Nguyen, and a third doctor. A chest X-ray was taken, and sometime after 7 pm I was wheeled to room 340 for an overnight stay. The plan was for me to undergo another thoracentesis sometime during the weekend. My room was in the palliative care ward, and the other bed was briefly unoccupied before it was assigned to a feisty woman who’d spent days in emergency waiting for a bed; I learned she’d been to several hospitals, had a brain tumour and lung cancer, and described her pain as being an eight on the hospital’s subjective pain scale, where zero is pain-free and ten is the worst ever experienced. She didn’t seem to be suffering, so perhaps she was very strong. I advised her to ask for Percocets, which she’d never tried; I believe she did find some relief with them. I smuggled in and consumed two Percocets during my stay, not wanting to risk delay or denial by the staff.
More blood was drawn the next morning (Saturday), and I was discharged at noon by a Dr. Ian Clayton, who explained that my recurrent pleural effusion was almost certainly caused by splenic hematoma from my surgery a month earlier. I also discovered that the hospital did not perform thoracenteses during the weekend, but as part of my discharge instructions, Dr. Clayton provided the phone number for Interventional Radiology so I could arrange an outpatient pleural tap during the week and referred me to the hospital’s Medical Surgical Clinic for outpatient follow-up of my pleural effusion. This meant that this third hospitalization was unnecessary and it denied a bed to a more deserving patient (monopolies tend to produce shortages, as noted earlier). I wished my roommate luck and my wife drove me home.
On Monday, January 23, when my upcoming thyroid surgery was only two weeks away, I was notified by Dr. Kumar’s office that a new date had been set: 8 am on January 26—three days hence! Given my present infirmity, I had doubts about my fitness for another major operation.
Dr. Peters called me at home the next morning, telling me not to worry. Like doctors Zingel and Safa, he had been closely following my case. I thanked him for his concern and support. In the afternoon, my dad drove me to NYGH for my thoracentesis. Though I also had an appointment for a throat ultrasound at Branson several hours later, the staff at NYGH’s ultrasound department kindly performed the neck scan themselves to spare me the extra trip. For the thoracentesis, I was taken to a deserted and lonely glassed-in waiting room across the corridor from the draining chamber, where I sat in a chair that was decidedly unergonomic in light of my physical state, until a young chap had me sign a clipboarded waiver for the procedure. During this second thoracentesis, again performed by Dr. Jebali, I retched and coughed, knocking the cannula loose and thus aborting the procedure after something like 900 mL had been drained. We left the hospital and my dad took me to see Dr. Zingel to get information about my patient history for my pre-op meeting the next day, but the visit turned into a mini-checkup out of concern about my readiness for surgery, less than 48 hours away.
On Wednesday, a day before the thyroid operation, my dad drove me to LifeLabs for more bloodwork before taking me to the hospital for my noon pre-op meeting. My wife met us at the pre-op registration waiting area, and my dad departed at my urging. After waiting in the pre-op area, we were both ushered into the office of nurse Patty, who weighed me (158.4 lb., or 71.9 kg, with shoes, pants, and shirt), took my vital signs, went over my paperwork, imparted information, and explained that to reduce the risk of blood clots during surgery I was advised to purchase a pair of anti-embolism compression stockings (available in the hospital’s pharmacy) and wear them to the hospital the next morning. I also provided swabs of my nostril and rear end, for which I used the nearby washroom. She brought me to another room for bloodwork and an ECG. Then, while my wife and I waited to see a Dr. Robert Olmert, an anesthesiologist, we visited patient registration and requested a private room (one bed), for which the charge was $280 per night. Dr. Olmert, concerned about my state, ordered more chest X-rays (the requisition was marked "stat" and there was little waiting), consulted with Dr. Peters on the phone, and was finally satisfied that the surgery could proceed. Meanwhile, I had a retching fit in his office. For much of this time, though, my wife and I sat in the comfortable chairs in the main pre-op waiting area, which also served the lab patients, but which was deserted at this time of day—and again I slumped, leaned on her shoulder, and frequently changed sitting positions. Before leaving the hospital, she purchased the stockings while I rested in a nearby padded chair.
On Thursday morning, January 26, my wife helped me put on the stockings. It was still dark at 6 am upon our arrival at the hospital. As before, I checked in at patient registration and went upstairs to the misnamed "day surgery" registration desk, and thence to the inner waiting area. We watched a family whose little boy was to have an operation. Soon I was called by a nurse to one of the office cubicles to verify my identity, have vital signs taken, and answer questions. She directed me to a changing closet where I put on the standard hospital outfit. I then sat with my wife in the inner-inner waiting lounge with the surgery status board; my parents would arrive later. Other patients with loved ones also waited for their turns. A nurse came at 7:30 am to take me (and another patient) away—but not before I kissed my wife goodbye. While the three of us walked down a set of corridors I spoke with the other patient to break the silence. Finally, the nurse stopped at a gurney in the corridor upon which I was to await surgery; she raised its head end to my liking, placed a blanket over me, and escorted the other patient further down the corridor to another gurney. To my left, across the corridor, was my assigned OR (different than before); on my right was a large window, through which I could see the hospital’s multilevel parking garage in the approaching dawn. I watched several cars move through it, and wondered about the people in them. Dr. Kumar came to see me; he said that because my calcium levels had recently been fluctuating, a possible sign of parathyroid hyperplasia—the third spike of the MEN 2A trident, which appears in up to 20% of sufferers—the decision about whether to remove them would be made during the operation. The anesthesiologist arrived and talked to me about certain possible complications and contingencies. I walked into the operating room and clambered onto the table, and after some small talk, the anesthesiologist started an IV on my right hand and a mask was placed over my nose and mouth, from which I breathed oxygen. There was talking and activity for several minutes before I lost consciousness.
I woke up in recovery at 2 pm, six-and-a-half hours later. Dr. Kumar was soon with me for a short time, saying a la Kafka that I wouldn’t remember his presence on this particular occasion. My throat was sore, especially when swallowing, but the discomfort was mild, considering. My legs were enclosed in sleeves that were continually inflated and deflated by a machine (intermittent pneumatic compression, or IPC). Apart from an IV in my hand delivering morphine and a Foley urinary catheter, a Jackson-Pratt drain tube emerged from a spot near my left collar bone and terminated in a clear, rubberlike, semi-collapsed bulb with graduated volumetric markings, designed to draw excess blood and fluid from my surgical site by means of simple suction. I remained in recovery until a room became available, almost three hours later—yet during this time, most or all of the other patients in the recovery area were wheeled out in turn, presumably to their own rooms. I didn’t physically move at all during this period but watched and listened to the activity around me; I may have dozed from time to time. The nurses who attended me were kind and gentle.
At 5:45 pm I was wheeled, fully conscious, to the now-familiar fifth-floor surgical ward, but instead of a private room as requested, my bed was in room 527, which housed three other—occupied—beds, one in each corner. Nonetheless, the other patients and their visitors were quiet, and each bed was segregated by privacy curtains that collectively quartered the room except for a central area that connected the entrance with its adjoining washroom to the sole window in the far wall. My appointed bed was the first one on the left. Above the foot of each bed hung a flat screen television that was attached to the ceiling outside its respective privacy curtain. A shortage of electronic IV pumps meant that I had a gravity drip for the time being; we appropriated an electronic unit from the corridor several hours later. The room was at the end of a corridor at some distance from the nurse’s station, and therefore all the quieter.
The operation, a "total thyroidectomy, parathyroidectomy with autotransplantation to left forearm, bilateral compartment and superior mediastinal neck dissection" (Patient Discharge Information, January 29), had been a success. Due to my elevated blood calcium level, the two inferior (lower) parathyroid glands had been removed (this was confirmed later by the pathology report, for, to the surgical team, they were indistinguishable from the thirteen lymph nodes which had also been removed) and one of my superior (upper) parathyroid glands had been taken out, bisected, and ruled healthy. One half of the latter was then implanted in my left forearm, which was now covered by an adhesive bandage. My other superior parathyroid had not been found.
To monitor my serum calcium level, for which the desired range was 2.15 to 2.55 mmol/L, blood was taken regularly, at approximately 2 am, 6 am, 2 pm, and 6 pm every day. Elevated at first, my serum calcium soon dropped to normal levels—whereupon I was given a calcium supplement—and had fallen to the low end of normal (2.16 mmol/L) on the day I left the hospital.
I ate jello at 6:15 pm on the day of surgery. My urinary catheter was removed and I was taken off morphine the next morning. For pain relief I was given Atasol®-30 (equivalent in codeine strength, 30 mg, to Tylenol 3®) and Extra Strength Tylenol® (500 mg acetaminophen). My throat was sore, as expected, which was most noticeable when swallowing. My upper buttocks were sore from, I presume, time spent flat on my back during the long operation and from the uncomfortable hospital bed (thin mattress), which was always adjusted so I could sit, transferring the mass of my upper body to my lower half; this soreness remained for weeks. I was subjected to daily anticoagulant injections and the beginnings of lifelong thyroid hormone replacement therapy—in pill form.
Within hours of the operation my appetite had returned—at long last. The bitter irony was that I wouldn’t get permission to eat solid food until the following day. In the meantime, I distrusted the authenticity of my renewed hunger, which had been absent for more than five weeks. To confirm my reawakened gastrointestinal urgings, my devoted wife ventured out into an ice storm the next evening and brought me a massive Lick’s® hamburger, french fries ("freedom fries" to bloodthirsty partisans), and pop. It is unlikely that the Percocets were responsible for my appetite suppression (as has been suggested), which began December 20, for I hadn’t taken any from January 2 to January 8, and my last Percocet was ingested only about 24 hours before I regained my appetite. In addition, my pleural effusion symptoms had largely subsided after the surgery; I felt much better. A few days later Dr. Sapru told me she had been speaking to Dr. Peters about my sudden recovery, and the suspicion was that the sufflation of my lungs by the ventilator during the thyroidectomy had driven the pleural fluid aside, straightening pockets in my lungs, or something like that—I don’t remember her words. This may have also restored my appetite.
A word about visitors. My wife, whom I love very much, was with me all day, every day, and my parents also visited frequently throughout my hospital stays. Other visitors included my sister and her family, my grandfather (my sole surviving grandparent), and my wife’s parents and sister, but not my aunts, uncles, or cousins—and hardly any friends. Other patients, too, seemed to be visited almost exclusively by relatives. This was unexpected, for I had thought bonds of friendship were at least as strong as those of blood, given that we choose our friends. Rather than think less of the friends who didn’t visit or send cards, I think more of those who did. People, visit your friends and loved ones who are stuck in hospital; you’re mobile, they aren’t. They’re scared, possibly lonely, and grateful for your company, even if your visit is short. It lets them know that they matter to you, that we’re all somehow together in this otherwise indifferent universe.
Dr. Kumar came to my bedside several times and finally discharged me from the hospital at 11 am on Sunday, January 29, just after I had given my lunch order; I forgot about lunch in my excitement and we were gone before it was delivered. We also missed Dr. Zingel, who, I later found out, was on his way to visit. I was told that in the event of tingling in the cheeks or extremities, which was a sign of hypocalcemia, I should report to emergency for intravenous calcium infusion.
On the way out, I thanked Donna, my nurse during the past few days, who seemed to take a special interest in me (but perhaps all her patients receive the same impression), and who recognized me from one of my previous hospital stays and, remarkably, immediately discerned that I had lost mass (25 lb., or 11.3 kg) during the interim—making me harder to recognize.
Once again I silently bade a happy farewell to the hospital from the passenger seat of my wife’s car. The day was crisp and sunny. We stopped at a drug store to fill prescriptions for the synthetic thyroid hormone levothyroxine sodium (0.1 mg tablets) and the analgesic ratio-Lenoltec No. 3 (containing 30 mg codeine), which I took for the next few days for discomfort while swallowing and for the sore patches on my upper buttocks, as mentioned earlier.
I was feeling good enough to drive, but wasn’t able to turn my head sufficiently to see because of my neck incision, so my dad picked me up and took me to see Dr. Kumar at his office on Wednesday, February 1 for the removal of the tape and stitches on my neck (a bit of stinging) and the metal staples on my left forearm (easy and painless). Afterwards, my dad drove me to my parents’ house where my wife joined us later for supper.
I was at NYGH the next day, courtesy of my dad, for chest X-rays and a consultation with Dr. Sagar Atwal, an internal medicine specialist, at the hospital’s Medical Surgical Clinic, to monitor my ongoing pleural effusion. Imaging showed that my fluid level was modest, and I was booked for a repeat appointment in two weeks.
On February 6, I drove a vehicle for the first time since before my December 20 operation—a long hiatus for a car nut. On this excursion I picked up a now-familiar orange 24-hour urine collection jug from LifeLabs for the measurement of my catecholamine and metanephrine levels to ensure that there was no residual pheochromocytoma. Having avoided the usual foods and ingredients for the past three days, I began the collection the same morning.
My car battery, which had been sitting for almost seven-and-a-half weeks, and which already had charging problems, failed to start my Toyota the next morning. My wife took me to buy a new battery in the afternoon. Loss of muscle mass over the preceding weeks made lifting and carrying the old and new units difficult (unusually, the defunct battery had no carry strap, adding to my woes). Despite being assured by Canadian Tire® automotive department personnel, backed by an online parts database, that the new Motomaster-brand battery would fit my car, it wasn’t tall enough to match the threads on the factory hold-down bolts; I wasn’t able to secure it adequately until later.
Carless though able to drive, I was conveyed by my dad on February 8 to the Leslie Street medical building where I dropped off the filled urine jug at LifeLabs and saw Dr. Kumar. My wife, who met us there, held my hand as Dr. Kumar inspected my vocal cords—I was still unaccountably squeamish about having the flexible laryngoscope inserted into my nose—while I intoned vowel sounds. At the conclusion of the procedure, my aversion to it melted away and I felt silly for having dreaded it. I jokingly asked if he’d been practicing with the device, for I hardly felt a thing despite the anesthetic only taking effect several minutes after it was over. But more importantly, he verified that my left vocal cord was paralyzed in the closed position—not a surprise given the known risk of thyroidectomy-related nerve damage and my recent discovery at a steak restaurant that I wasn’t able to raise my voice over the noisy crowd to communicate with the people at my table. Friends had also commented that my voice seemed hoarse. Dr. Kumar opined that my vocal cord would heal over the coming months.
Dr. Safa called me a week later to report urine analysis findings: my catecholamine levels were normal, but metanephrine and normetanephrine results were still pending. The next day I posed for chest X-rays at NYGH and went downstairs to see Dr. Atwal at the Med/Surg Clinic, who had reviewed the images and confirmed that my pleural effusion was abating. I saw Dr. Safa on February 17. Two weeks later, I was at LifeLabs to give blood for analysis of TSH (thyroid-stimulating hormone), free T4, serum calcium, phosphate, magnesium, and PTH (parathyroid hormone), as ordered by Dr. Safa.
On March 6, I met with Dr. Peters, the adrenalectomy surgeon, at his Sheppard Avenue office. He spoke highly of medical oncologist Dr. Stefania Maklakiewicz at Toronto’s Princess Margaret hospital, whom I was to consult because of the January 6 pathology report of my pheochromocytoma’s possible malignancy.
Later the same day I visited Dr. Safa, who increased my thyroid hormone dosage from 100 to 125 mcg/day, based on my TSH level and a body mass formula. I picked up a 24-hour urine collection jug and surrendered blood for testing. On March 14, blood was taken at NYGH for DNA analysis by a U.S. lab for Von Hippel–Lindau (VHL) disease.
Part 3: MEN: 2B or not 2B?
Dr. Rothman informed me on March 16 at NYGH that genetic analysis of the blood withdrawn on December 5 had verified the diagnosis of MEN 2A. (DNA testing for VHL was then cancelled.) The lab’s two-page report, dated March 1, described the precise genetic location of my mutation within the RET proto-oncogene, information useful for the testing of blood relatives for MEN 2A. Being autosomal dominant, any child of mine will have a 50% probability of inheriting it (and thus having his or her thyroid gland removed preventively). On the other hand, it is unlikely that I received MEN 2A from either of my aging parents, given that (1) it usually presents before middle age, (2) virtually all sufferers are afflicted with medullary thyroid cancer, and (3) tests of my mother’s DNA would prove to be negative (my father declined the test).
At Branson on the 20th, Dr. Kumar inspected my vocal cords for a third time (there was improvement) and said my thyroid tumour was designated as T2 (greater than 2 cm but no greater than 4 cm), N0 (no indication of lymph node metastasis), M0 (no sign of distant metastasis).
Months after my final hospital discharge, my immediate family and I celebrated what we called Christmas II—not for religious reasons, but because our traditional family event had been precluded by my extended hospitalization for spleen trauma.
On Wednesday March 28, I was at NYGH for chest X-rays, which were reviewed immediately by Dr. Atwal: the remaining pleural fluid was negligible. Two days later I was at Dr. Safa’s Leslie Street office for BP ("perfect"), neck and armpit (lymph node) examination, and to endure more bloodwork (TSH, free T4, serum calcium, and albumin) at the lab downstairs. I collected 1.4 L of urine during the 24-hour period spanning Saturday and Sunday, to measure catecholamines and metanephrines. An MRI of my abdomen and pelvis with contrast-medium injection via saline lock, for possible recrudescence of any residual or malignant pheochromocytoma, was conducted at NYGH on April 3.
The next day I visited Princess Margaret Cancer Centre hospital to see Dr. Maklakiewicz of the GI (Gastrointestinal) Clinic about my pheochromocytoma and to drop off CD copies of my pre-op MRI and CT scans for her review. While there, I also spoke with Dr. Ballard Duncan, a radiation oncologist. It being a fine spring day, and my weakened body in need of some exercise, I then strolled up University Ave. to Yonge and Bloor.
A Dr. Safa-ordered neck ultrasound was performed at NYGH on April 13. I was in downtown Toronto again on the 17th to see Dr. Beausoleil, who examined me and dispatched me to the seventh floor diabetes clinic to give blood to be forwarded to the Mayo Clinic in Minnesota for metanephrines analysis; for this I lay on a pillowless bed for 30 minutes beforehand in a quiet, darkened room. Dr. Beausoleil called the next day with the news that my recent 24-hour urine test (April 1), MRI (April 3), and ultrasound (April 13) were negative (she had been copied by Dr. Safa on the requisitions). After a 12-hour fast, blood was removed on the 24th at LifeLabs (1100 Sheppard E. location) for measurement of calcitonin, a tumour marker for medullary thyroid cancer, elevated levels of which could mean recurrence. More blood was extracted on April 30 (LifeLabs, Victoria Terrace) for TSH and free T4.
If you need bloodwork, make sure you know beforehand whether your test requires fasting, information not always indicated on the requisition. I'm told that being well hydrated makes the veins easier to find. The labs are often busiest first thing in the morning, when they are clogged by patients who have been fasting overnight. Some, like LifeLabs, allow appointments, which can be booked online. Some types of blood test are only conducted in the morning. Others are allowed only on certain days of the week, due to the company’s laboratory schedules. Nurses practiced in blood taking are going to find a vein on the first try. Ask for the cotton ball, which is pressed to the hypodermic site to absorb bleeding and prevent bruising, to be secured with paper tape, which comes off without stretching skin from the bone—unlike the plastic variety favoured in hospitals.
I saw Dr. Duncan again on May 2 (after waiting two hours past the appointment time due to "misplaced papers"). In his opinion, there was no need for abdominal radiotherapy. There was no evidence of cancer at the site, the precise location of the "capsule invasion" (surgical report of Jan. 4) was not known, and the intestines, which would have shifted to occupy space vacated by the excision of the left adrenal gland, would be adversely affected by the radiation. Annoyingly, my imaging CDs had been destroyed by personnel at Princess Margaret despite my earlier request for their return.
On the 5th, Dr. Safa increased my thyroid hormone replacement dosage from 125 mcg/day to 175 due to an increase of my TSH from 10 to 18.71 µIU/mL (reference range is roughly 0.35 to 5). The next day I yielded blood at Gamma-Dynacare (open Saturdays) for TSH, free T4, creatinine, serum thyroglobulin (a tumour marker), and anti-thyroglobulin antibodies (an immune system response to thyroglobulin). I saw Dr. Kumar on May 16.
On the same day, Dr. Safa called with the good news that my calcitonin level was negligible. When I saw him the next day, he requisitioned an MRI of my pituitary gland to rule out MEN 2B. He also requisitioned another battery of blood tests (serum calcium and serum PTH—and vitamin D, which cost $33). He phoned me on the 22nd to tell me that calcium and vitamin D were normal, but that PTH was quite elevated, which he determined was probably because the blood had been drawn from my left arm, inches from the site of my relocated parathyroid gland. He advised that I always offer my right arm in future. A week later (May 29), blood was accordingly retaken for PTH and calcium and on June 5 for TSH, free T4, serum thyroglobulin, and anti-thyroglobulin antibodies. He shared the results at his office on the 11th; TSH was 1.32 µIU/mL, down from 18.7 and well within the reference range. The rest were normal except for thyroglobulin, which was < 0.5 (ref. range 1.6–60.0); this was, I believe, a good result (anti-thyroglobulin was < 20, with a ref. range of < 40). My pituitary gland MRI, with contrast injection, was performed at NYGH on June 13; it was negative.
I saw Dr. Kumar for routine consultations on August 7 and November 7, 2012, and Dr. Safa on November 6. All prognostic signs were optimal. Bloodwork, a "thyroid bed and neck" ultrasound, and 24-hour urine collection were ordered by Dr. Safa. The ultrasound was carried out at CML Healthcare in the building housing Doctors Kumar and Safa on Leslie Street. On Nov. 15, Dr. Safa adjusted my thyroid hormone dosage from 175 to 150 mcg/day. On February 12, 2013, Dr. Safa joyfully reported that my calcitonin level was still low enough to be "undetectable". Of course, there were requisitions for blood, an MRI of my adrenal areas, an MRI of my abdominal regions, and a neck ultrasound—twice-yearly screenings that will be routine for the rest of my life. The adrenal MRI, to examine my right gland for pheochromocytoma and the site of my left for possible recurrence, was performed on March 21, 2013 at KMH Labs in Kitchener (Dr. Safa likes to use different labs, and the Kitchener location was the one nearest my employer); the nurse/technician there jabbed me 4 or 5 times before finding a vein for the contrast medium. The abdominal MRI was conducted at KMH Labs’ Markham location on Saturday, April 13, 2013; this time I was given 450 mL of banana-flavoured barium sulphate solution to drink beforehand.
The screening routine continued. Branson was the location for an ultrasound of my thyroid region on April 26, 2013. On April 27, I collected 3.25 L of urine (nearly the jug’s limit). LifeLabs in Guelph was the lucky recipient of my blood during my lunch hour on April 29, where I delivered my urine jug. The next day, Dr. Safa obligingly stayed late at his office for my delayed arrival (I had to drive from Guelph to Toronto during rush hour) so I could learn that my ultrasound and the MRIs were negative, my new favourite word. My free T4 was 26 pmol/L (upper ref. range is 23), so he reduced my thyroid hormone dosage from 150 to 125 mcg/day. I saw Dr. Kumar on May 15. Six months later, in late October 2013, bloodwork resumed: TSH, albumin, free T4, PTH, serum calcium, and the scary one, serum calcitonin. My neck and thyroid bed were checked by ultrasound. Everything was negative, though my TSH was elevated (11.34, compared to the reference range of 0.3 to 4 or 5 µIU/mL), possibly due to stress, so I was retested later in the week, and await the result. As of this writing (early November, 2013), my calcitonin result isn’t yet available. Thus, I remain—for the time being, at least—unburdened by a finding of new malignancy, a freedom which must correspondingly enrich my present existence, haunted as it is by the spectre of a grim future.
Dr. Safa once told me that a full recovery from the two major operations and the spleen injury trauma would take months; he was correct. My voice eventually returned to normal. Weight loss caused a bony ass, which sometimes made sitting uncomfortable. The nails on my big toes developed ridges which I diagnosed as Beau’s lines, likely caused by trauma or malnutrition or both. For months after surgery, my finger joints would become sore after a period of immobility, as when waking up. From mid to late 2012, I had several invisible tongue sores, which may well have been unrelated to MEN. Between March and May 2012, the sole of my left foot developed two blisters, though I hadn’t gotten new footwear, and otherwise never get blisters; perhaps my walking mechanics had deviated after prolonged inactivity. Shortly after the adrenalectomy, shoulder-joint soreness would come and go until about August 2012, nine months later. Nevertheless, a certain range of motion still (as of this writing, November 2013) causes either shoulder joint to pop (one possible cause is the antibiotic ciprofloxacin, 2,000 mg of which I ingested in early 2012). My hip joints now occasionally pop, too. Similarly, as a reminder of my pleural effusion, I still experience a sore-lung sensation in my lower left side when inhaling sharply (as from a sudden yawn or the prelude to a sneeze, causing me to abort both), though this started to wane somewhat in May, 2013. In addition, I was for many months unable to fully bend my knees, and thus could not crouch or squat; attempts to gradually force them caused a sensation of pressure in the knee joints and the impression that something in them would give. For this, Dr. Kumar wrote a prescription for physiotherapy, which I ultimately declined to redeem.
Some closing remarks are in order, even if my story isn’t over.
My complaints about the nurses who cared for me are few. Once or twice they didn’t answer my summons or were late. (For my part I pushed the call button accidentally on several occasions.) Sometimes they were loud at night, making sleep difficult (I probably never slept for more than a few consecutive hours, which isn’t conducive to recovery). Sleep attempts were also hampered by their frequent intrusions to take vital signs (blood pressure, blood-oxygen, temperature) and blood, even in the middle of the night—though this couldn’t be helped, of course. On the other hand, their laughter and cheerful chatter made me feel better.
The worst things in the entire affair were the headaches, which were indescribably vicious; the spleen trauma, which made my life miserable for five weeks; and the new fear of metastasis (the distant future wasn’t a concern at the time of my more immediate troubles). Mere annoyances included wait times and hospital-monopoly parking fees, which must dissuade visitors at the margin.
The best things include being cured of both hypertension and profuse sweating. In addition, I emerged from it all largely unscathed. That my “pheo” presented first (which is unusual) led to the discovery of my symptom-free thyroid carcinoma in its early stages. Moreover, actual pain sensations can't really be remembered, so they no longer cause concern—whereas the good things remain with me. My vocabulary expanded. I’m now able to joke about cancer without running afoul of another disease: political correctness. Example: Cancer? I’ve never even met her!
Some ambiguously good/bad things should be mentioned. I have seven trophy scars, of which I’m rather fond. These consist of four laparoscopic ports on my left side, a scar across my throat from the thyroidectomy incision (not too conspicuous), a small discolouration on my collar bone marking the drain incision, and one on my left forearm where part of a parathyroid was implanted. Occasionally, a small, sharp lump will temporarily appear near the latter. I didn’t grow accustomed to venipuncture until after my hospitalizations. My remaining sickness-free time, whether it’s months, years, or decades, is more precious, which causes me to be more discriminating about how I make use of it. Finally, I got to see MRIs of my brain and abdomen, which is every bit as cool as it is unnerving (my mother couldn’t look at them).
Appendix I: Some statistics, because I like them
Then, about five years ago, at the age of forty (or perhaps earlier), I began to perspire—heavily and frequently, and often unaccountably. My shirts were oftentimes wet at the armpits and less commonly at my back and chest. This was accompanied by heat intolerance, the feeling of excessive body heat. Indeed, my wife described me as a furnace. I chalked it up to a combination of subconscious anxiety and physical inactivity.
A few years later, in early 2010, I tried my parents’ blood pressure monitor during a visit, mostly for amusement. Unexpectedly, my blood pressure was at the high end of normal. My parents then lent me the monitor (I later purchased my own electronic digital unit, an Omron® 7 Series™) and my mother, a retired RN, urged me to make an appointment with my family doctor, William Zingel (not his real name—the names of all physicians have been changed). When I saw him in May of that year, he took blood samples, had me provide urine, and arranged an electrocardiogram (ECG or EKG) at the quasi-private and often busy LifeLabs®, which has a location down the hall from his office. When he saw the ECG printout he furrowed his brow (I didn’t ask why) and sent me to the Branson site of NYGH (North York General Hospital) for an echocardiograph, an ultrasound of my heart (June 1). A few days later I underwent a renal (kidney) ultrasound at LifeLabs, possibly because trace amounts of blood in my urine had been discovered. I started measuring and logging my blood pressure and heart rate (which was also elevated). No medication was prescribed, and for more than a year all was quiet on the health front.
Incidentally, in the spring of 2011, I tried to donate blood at a local church. After spending three hours alternately waiting and going through other forms of red tape, I was ultimately—and unapologetically (a moral disease of our times)—turned away because of hypertension ("to protect your own health"). My advice for Canadian Blood Services is this: rather than waste a potential donor’s time, please inform him or her up front of this relatively common disqualifying condition, perhaps by including this information in the literature that is handed out to arriving would-be donors.
The surges started in August 2011. This was my term for unprecedented, brief, spontaneous episodes of what felt like pressure in my chest, lasting no longer than a minute. Despite being hit every day or so, I told no one about them—incredibly, because I knew something had to be wrong.
My stoic silence ended in the early hours of August 31. While climbing into bed I was struck by a surge that rapidly, unexpectedly—and horrifyingly—culminated in a fully-formed, excruciating headache—far worse than the migraines of my youth, which were themselves incapacitating. Never have I suffered agony of such magnitude. It was, without exaggeration, unbearable. I seem to recall that it commenced with a sort of popping sensation, but perhaps this was a palpable metaphor for the suddenness of the assault on my brain. During the onset there was also a curious sensation of sinking into the bed, likely an effect of my confusion and terror. The immediacy of the pain prevented analysis, neutralizing the concern that it was caused by a stroke or aneurysm. After about 30 to 60 minutes, the demon was gone.
A headache of this severity could not be ignored. As soon as Dr. Zingel’s office opened that morning I called for an appointment. He saw me within the hour, taking more blood and urine. He also requisitioned (i.e., ordered via a generic document) a 24-hour urine test. This is the collection of all urine excreted during a single day into a special plastic jug, often containing a preservative acid. The type of analysis to which my urine would be subjected necessitated that I avoid physical exertion, bananas, aspirin (acetylsalicylic acid), acetaminophen, vitamin C, and foods containing caffeine and chocolate during the collection and for the three days preceding it.
On September 2, I chanced to see an episode of The Investigators, a true-crime TV program I didn’t normally watch, about the case of Alan Chmurny, a chemist who used mercury to poison a female colleague. Strangely, the symptoms of mercury toxicity described on the broadcast resembled my own; an Internet search turned up this statement: "[T]he clinical presentation [of mercury poisoning] may resemble pheochromocytoma." This rather unwieldy term from the Greek for dusky chromaffin (colour-related) cell refers to a type of adrenal gland tumour.
Meanwhile, I was to suffer five more extreme headaches, plus five of the milder variety. All were at night and were immediately preceded by a surge. Bodily movement aggravated them (severity seemed to vary somewhat with heart rate), but motionlessness was impossible during the worst headaches: if I sat, I would constantly writhe in torment, and lying down was worse (perhaps related to gravity); thus, I usually chose to stand, braving the consequential heartbeat-induced spike from the exertion. Most such headaches were gone after five or six minutes. The longest-lasting, which was of the severe type, beset me after midnight on September 6; I got out of bed and ambled to the living room, closing doors behind me to avoid waking my wife. On the theory that music might help, I played my stereo at low volume. I took an Advil® (ibuprofin) about an hour after onset, but its efficacy was indeterminate. I remember moaning like an injured beast while babbling a nonsensical monologue in an attempt to distract myself. The ordeal lasted about two and a half hours, but the ache persisted in a milder, throbbing form throughout the rest of the day.
I was now living in terror of the next surge-delivered über-headache. The prospect of another such bout was intolerable, so I visited my doctor the same day (9/6) to see what could be done. When he saw the word pheochromocytoma written at the bottom of my page of blood pressure readings, he acknowledged harbouring the same suspicion. He gave me a small box of Coversyl Plus (perindopril erbumine 4 mg + Indapamide 1.25 mg) for blood pressure and recommended Aleve® (naproxen, an NSAID), one of the more potent non-prescription analgesics, for the headaches. Not convinced that Aleve would protect me from cranial hellfire, I phoned him later the same day and pleaded for something more potent; he prescribed the antidepressant nortriptyline. Though none of these drugs stopped the surges, I never suffered another acute headache. Their cessation was almost certainly due to the blood pressure medication, for I eventually discontinued nortriptyline—on doctor’s orders—and Aleve—on my own initiative after careful consideration—and replaced Coversyl Plus with a different hypertension remedy, Norvasc (amlodipine besylate)—again on doctor’s orders. The milder headaches persisted for another 18 days, until September 24, but the surges continued beyond that date.
At a family gathering for my sister’s birthday the same week, others noticed my sweating. My face was dripping and the room felt hot.
Diagnostic efforts continued apace. On September 13, I had an ultrasound examination of my pelvis and abdomen at LifeLabs. This was to discover the cause of microscopic hematuria (blood in the urine, but invisible to the naked eye), but none was found. Two days later, I had a CT scan of my brain at the Branson site of NYGH. Wearing my street clothes, I simply lay face-up on the padded table, which was then rolled into the centre of the large doughnut-shaped machine, like a Frenchman on a bascule being fed into the lunette of a guillotine.
The CT scan report ruled out "acute hydrocephalus, hemorrhage, shift, [and] definite cortical infarction [a form of stroke]", but mentioned an "extra-axial CSF [cerebrospinal fluid] density lesion", suspected to be an arachnoid cyst.
Consequently, an MRI of my brain was performed on the morning of October 1 at NYGH, eleven days after being requisitioned (its priority was marked "routine"). It was a Saturday, and my wife accompanied me for moral support. The entire procedure, from being called in from where we were waiting, took 50–60 minutes. In a small windowless room, I disrobed to my socks and underwear and put on a rear-opening hospital gown, string-belted trousers, and shapeless, soft, disposable slippers; my clothes were stowed in a locker and secured with a dial padlock (combination known to the attendant). In the same room, the attendant asked me various questions (already covered on the MRI requisition form), noting the answers on a clipboard, and had me sign a release. The room containing the machine (there are two at NYGH) is continuously filled with what sounds like the pleasant chirping of birds. I opted for earplugs, though the imaging process didn’t seem particularly loud. I already knew that the narrow MRI tube into which I would be inserted could be a problem for claustrophobics—though newer models have a larger internal radius—and that patients can arrange for sedation; for this reason, the subject is given a flexible bulb to hold which, when squeezed, signals the staff to stop the procedure and roll the table out of the tube. I found the close confines to be no problem whatsoever, even considering that, in addition, my head was in a sort of cradle, a strap had been passed across my forehead, and a cage-like antenna had been placed over my face. Thinking about this later, I reasoned that claustrophobia is probably dependent on the perception of the impossibility of escape. Lying comfortably, it was not difficult to remain perfectly motionless for the full 40 minutes of scanning. Midway through the procedure, I was rolled partly out of the tube so that a contrast medium could be injected into my arm. Overall, it was a very easy, interesting experience. Apprehension about MRI scanning thus seems unjustified. Later, I was happy to learn that the MRI scan confirmed the negative findings of the CT scan. Arachnoid cysts are usually of no concern.
On September 21, Dr. Zingel drew more blood and showed me the findings of my 24-hour urine analysis:
- Epinephrine: 989 nmol/day (should be < 120);
- Norepinephrine: 1267 nmol/day (should be < 575);
- Normetanephrines: 11.4 umol/day (should be < 3.4);
- Metanephrines: 14.7 umol/day (should be < 1.5); and
- Vanillylmandelic acid: 62 umol/day (should be between 6 and 36).
That all of these substances were significantly elevated pointed to pheochromocytoma (there’s that word again), a tumour of the adrenal medulla (the core of the adrenal gland) that releases excessive quantities of catecholamines, causing diaphoresis (profuse sweating), high blood pressure, tachycardia (rapid heartbeat), and headaches. My doctor and I hoped that these findings were somehow incorrect (e.g., that I hadn’t hewed properly to the dietary prohibitions of the test or that my medication had thrown the numbers off). Moreover, to confirm pheochromocytoma, a differential diagnosis would need to eliminate conditions with at least some of the same symptoms, such as anxiety attacks (which produce sweating and headaches), intracranial lesions, cluster headaches, and obstructive sleep apnea (which cause hypertension and nocturnal hypoxia, of which the latter can lead to excessive catecholamine secretion). The next day I drove my wife to York Central Hospital for minor surgery, and while waiting for her in the corridor I looked around at the staff, the patients, the gurneys, and other details, as if to familiarize and thus mentally prepare myself for a hospital stay in the near future.
In accordance with his suspicions, my doctor referred me to Dr. Ahmad Safa, an endocrinologist, whose main office is in a medical arts building on Leslie Street in North York (with scarce—but free—parking). Dr. Safa would go on to manage my case, a complex and time-consuming affair. A tireless worker, he was able to pull strings on my behalf, possibly saving my life (see below). Both he and Dr. Zingel would call me at home in the evenings, usually to report test findings, and otherwise go out of their way for me. When I first saw Dr. Safa on October 20, he took me off Coversyl Plus, replacing it with another blood pressure medication, Norvasc (amlodipine besylate). He started me at 2.5 mg/day (half a tablet, for which I obtained a pill splitter) and bade me visit Dr. Zingel four days later to verify that the dosage was correct (he then doubled it on November 11, and increased it further, to 7.5 mg, on November 29). Also on my initial visit, he had me undergo an ECG at the LifeLabs downstairs, and instructed me to obtain a 24-hour blood pressure monitor from a nearby cardiologist—though no unit was available until the next week.
The diagnostic testing continued at Dr. Safa’s behest. On October 26, he ordered more blood drawn for analysis (8 am serum cortisol, free T4, and serum calcium). LifeLabs was not equipped to analyze blood for chromogranin A, so that test was skipped. Some of these tests indicate that Dr. Safa was already thinking about my thyroid gland, but more about that later.
I picked up the 24-hour blood pressure monitor from the cardiologist’s office at Sheppard Avenue East, for which I paid $100 CAD, which oddly was not covered by OHIP, the Ontario government’s public (i.e., extortionate) health insurance scheme. After a long wait, which I suspected was because the technician in question, who didn’t seem very qualified, had arrived late, the device’s operation was explained to me before it was fastened to my person. Worn under the shirt, it consisted of a battery-powered recording/inflation pack attached to a waist-encircling belt; from it a narrow rubber tube ran up my back (to which it was taped) and down my left arm, where it noisily inflated an arm cuff every 30 minutes. That night (October 27–28) I slept on my back, with the device beside me on the floor, and was only able to doze off for a few hours due to its sudden and disruptive periodic operation.
I began another 24-hour urine collection on November 2, for analysis of fractionated metanephrines and catecholamines. That evening, Dr. Safa called me with the news that my ECG of October 20 showed "possible WPW" (Wolff-Parkinson-White syndrome), a cardiac condition that in rare cases causes sudden death—egad! Yet another (my third) 24-hour urine collection commenced the very next day, this time to gauge my creatinine (a measure of renal function) and cortisol levels.
Based on my ECG, Dr. Zingel ordered another 2D echocardiograph (cardiac ultrasound) on November 11, which was conducted three days later at NYGH’s Branson site. Dr. Quan Cong Trang, who also performed my earlier echocardiograph (June 1, 2010), told me at the end of the examination that there was no change in my heart function.
On November 17, I learned from Dr. Safa that, according to the urine analysis, my epinephrine, norepinephrine, normetanephrines, and metanephrines levels were again highly elevated, confirming the previous results (vanillylmandelic acid wasn’t assessed this time). Pheochromocytoma was now all but certain. Hence, I was to stop consuming caffeine, peppers, and bananas, and, in the event of a severe headache in conjunction with high blood pressure, was to go to hospital emergency, whereupon Dr. Safa would be paged automatically.
An abdominal MRI, ordered by Dr. Safa on November 1, was performed at NYGH on the 24th. No food or water was permitted four hours prior to the scan. I again donned hospital attire, and in another anteroom I lay upon a gurney while a saline lock (basically, a needle, a valve, and plastic tubing) was inserted into a vein and taped to my arm; this was to permit the introduction of a contrast agent after some initial images were taken. This was my first experience of squeamishness in this whole affair. Needles never really bothered me, but they’d never been left in my body, either. The idea was somewhat disturbing, and I was careful with that part of my arm to prevent the needle from being shoved where it wasn’t supposed to go (a concern which was actually unfounded). But, as I would repeatedly learn, a given medical procedure never turned out to be as harrowing as I had feared ("present fears are less than horrible imaginings")—an attitude which, unfortunately, wasn’t formulated until much later (being paradoxical in its strict form); in the meantime, I resolved to simply steel myself to whatever was coming. Once I was in the MRI machine, the saline lock was no longer an issue, for, being comfortable and motionless, I could scarcely feel it. Instead of earplugs (as with my first MRI), I wore headphones. The worst part of this MRI was having to hold my breath for periods of up to 40 seconds (by my estimate), not knowing when I would be allowed to exhale. On the way out of the radiology area, at a Dutch door in a main corridor, I asked for a copy of the images, including those from the earlier MRI of my brain, and a kindly woman burned a compact disk for me as I waited.
That evening I popped the CD into my laptop computer and viewed my innards. The supplied software allowed the selection of an image in one "pane" and a cross-section in another; on the selected image, the available cross-sections are marked with parallel dotted lines which are each clickable. I easily found the arachnoid cyst in my brain. I also saw what looked like a tumour perched atop my left adrenal gland. Was I looking at my pheochromocytoma, my tormenting demon?
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| MRI images showing a suspicious mass atop my left kidney |
Phenoxybenzamine indeed proved elusive. Before we left the building, I inquired at the pharmacy there, but the pharmacist had never heard of the drug, and it didn’t appear in his computer system; he promised to look into it for me, but his efforts were unsuccessful. My calls to other pharmacies yielded only puzzlement, largely thanks to deliberate government obstructionism. On Monday, I dropped in on Dr. Zingel and we discussed my pheochromocytoma diagnosis. About my own research, he would quote Pope: "A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring. . . ." But the reason for the visit was to get his advice about obtaining phenoxybenzamine, the obscure, forbidden chemical. He called Dr. Safa regarding its availability, and then phoned a pharmacy (I believe), asking about this "nonexistent" drug, but with no positive result. While I was there, Dr. Safa called Dr. Zingel with the news that he was able to procure phenoxybenzamine and that I was to have another CT scan, this time of my neck and chest, to rule out tumours there.
The next day, November 29, I went to see Dr. Safa. The phenoxybenzamine would be delivered to NYGH’s inpatient pharmacy, which did not officially serve non-hospitalized patients. Dr. Safa had found a couple of candidate surgeons for me; one was Dr. Peters, who operated at NYGH and whom I was to meet the next day; the other worked out of St. Michael’s hospital in downtown Toronto. I then went downstairs to LifeLabs to yield more blood, this time for random glucose (random = no fasting required), creatinine, potassium, random serum calcium, PTH (parathyroid hormone), and serum calcitonin.
Dr. Todd Peters, a minimally-invasive and oncological surgeon, was a youngish chap. His confident manner quickly put me at ease. The surgery was tentatively scheduled for December 20, twenty days hence, but subject to my timely acquisition of phenoxybenzamine. He explained that the operation, an adrenalectomy (the tumour was located in the medulla of the left adrenal gland, requiring the removal of the gland itself), would be laparoscopic, involving four small incisions or ports. The only real risk was hemorrhage due to the proximity of the large renal vein and artery. Afterwards, I’d be placed in intensive care—rather than a recovery room—for continuous monitoring of my BP, necessary because of the radical drop in catecholamine secretion after extraction of the adrenal gland. I’d probably be out of the hospital in a day or two. Moreover, he assured me that my pheochromocytoma was almost certainly benign (i.e., not cancerous). My worries mostly evaporated at this initial meeting. The tumour’s removal would also cure me of hypertension and profuse sweating, and I would no longer be haunted by the fear of devastating cluster-like headaches. And because the remaining adrenal gland is entirely sufficient for the body’s needs, I wouldn’t even require supplements. I walked to my car with a light step, pleased to be able to alleviate my loved ones’ worries with what I had learned.
My shipment of phenoxybenzamine arrived the following day, December 1. Events could now be set into motion. I wandered through the hospital and found the inpatient pharmacy, located behind an unmarked, intercom-equipped, windowless door that was remotely unlocked from within. Like a Hollywood saloon in the Old West, everyone glanced at the interloper. Actually, the staff was friendly and helpful. The red 10 mg capsules, of which only 28 had been delivered, cost me $7.70 each, plus a $13 fee, for a total of $228.60. (Excluding the fee, the drug’s price per troy ounce was thus $23,947.00 CAD, or 13.5 times more expensive than gold, which was $1,770.50 CAD on the same date.) Because it lacked a DIN, phenoxybenzamine was not covered by my wife’s Manulife Financial drug plan. Armed with the white paper bag, I then walked the 600 m (approximately 2,000 feet) between the hospital and Dr. Peters’ office to personally inform him that I had taken possession of the drug (he didn’t want me to start taking it before this). Drenched in sweat on arrival (despite it being about 5°C), I told him he was witnessing "pheo" in action. He gave me a roll of paper towels and let me use one of his rooms to dry myself off. Inside, the perspiration dripped from my face onto the gleaming dark floor (I wiped it up).
A neck/chest CT scan at NYGH’s Branson site was scheduled for the next day. After being called from the outer waiting area, I was directed to a private cubicle where I exchanged my shirt for a hospital gown. After sitting in an inner waiting area for a few minutes, I was conducted into an office that adjoined the CT room, where I sat in a padded chair and chatted with a nurse (or technician—the distinction is not always clear). She asked me various routine questions, in response to which I mentioned my pheochromocytoma diagnosis; I’m not sure if the staff already knew this from the requisition. She was interested in how my condition came to be identified (as were other medical professionals I would meet: pheochromocytoma is well known in the literature, but rarely encountered; one doctor said I was a med-student’s dream). Being in a good mood, thanks to the meeting with Dr. Peters, I regaled her with the tale, including my self-diagnoses (i.e., pheochromocytoma via symptoms and later its identification in the MRI images). Another nurse/tech entered the room and informed us that the CT scan had just been canceled by a doctor who had been consulted by phone because of a potential reaction of pheochromocytoma to contrast dye, which the facility was ill-equipped to handle. It was suggested that the scan be performed at the hospital’s main location.
At his office later the same day, Dr. Safa told me to discontinue Norvasc, my blood pressure medication. Then he outlined a tentative phenoxybenzamine schedule, by which the dosage would increase every 3–4 days. As for diet, I was to consume large quantities of water and 5,000 mg of salt per day (the latter was easily accomplished with commercially-prepared instant noodle soup; the saltiest Mr. Noodles bowls contained 2,860 mg of sodium per full serving, which exceeds the recommended daily limit). Coffee, alcohol, spicy food, and strong cheese were to be avoided.
I took one phenoxybenzamine capsule (10 mg) per day, starting that night (actually after midnight on the third). The dosage doubled on December 7 (one capsule twice per day). Three days later it increased to one capsule three times per day, and starting on the 14th, I took 40 g per day (two capsules twice per day), a dosage that was maintained until the day of surgery, December 20. I took 47 capsules in all. As intended, the drug gradually reduced my blood pressure, which I measured twice a day (each measurement consisted of two readings, one while lying down and one immediately after standing—this was to make sure my BP was stable and that my dosage wasn’t excessive). I also saw Dr. Safa periodically so he could personally monitor my blood pressure and review my recorded readings. The only side effects I experienced were a stuffy nose and dry ejaculation.
On Dr. Safa’s recommendation I consulted Dr. Yvonne Beausoleil, another endocrinologist, at her downtown Toronto office in St. Michael's Hospital Health Centre, on Monday, December 5. There, I was quizzed, examined, and had my vital signs taken. She concurred with Dr. Safa’s phenoxybenzamine plan, and dispatched me to the busy ground-floor lab to have blood drawn for genetic testing.
On December 8, twelve days before surgery, I checked in at NYGH’s patient registration office (a routine precursor to the pre-op meeting), where I expressed my preference for a semi-private room (i.e., with one other bed), which was covered by my wife’s insurance, but otherwise cost $230/day. I then spent the late morning at the hospital’s Pre-Operative clinic, which is routine for patients scheduled for surgery. There, after a period in the waiting area, a nurse (Sharon) weighed me (about 180 lb. or 81.7 kg, up from the 172 lb. or 78 kg I weighed as late as October 25), took vital signs, asked questions about my completed questionnaire, explained what I was to expect, procured blood, and administered an ECG. Later, after sitting in an inner area that lacks seats for all the waiting patients, I was interviewed by a Dr. Raymond Chung, an anesthesiologist. Finally, I waited a third time before being interviewed by a medical resident brought in because of the rarity of my diagnosis, who then concisely and expertly summarized my entire case to a Dr. Roger Kim, who had later joined us. All three of us discussed the forthcoming operation. There was some concern about my heart ("possible WPW"), but Dr. Kim assured me it wasn’t life-threatening.
I picked up the rest of the phenoxybenzamine prescription (54 capsules, or $428.80, including fee) from the hospital on Friday, December 9.
December 11 marked the last of my adrenaline surges. The previous one had been six days earlier, two days after starting phenoxybenzamine. These final surges were very mild.
On Tuesday December 13, I made another trip to NYGH, this time to its Genetics Program offices. Clinical geneticist Dr. Penelope Rothman discussed the possibility that my pheochromocytoma had been inherited and that it might be symptomatic of the genetic disorders Von Hippel–Lindau disease (VHL) or multiple endocrine neoplasia type 2 (MEN 2).
Soon after arriving at his office towards the end of the same day (December 13), Dr. Safa handed me a one-page blood analysis report. My calcitonin, a hormone produced by C-cells of the thyroid gland, was highly elevated. At 441.5 ng/L, it was 52.6 times greater than the normal maximum of 8.4. The report continued: "Test repeated and results confirmed. . . . Results supporting a diagnosis of MCT [medullary C-cell carcinoma of the thyroid] includes [sic] a greater than 2 to 10 fold rise above the baseline calcitonin concentration. . . ." Dr. Safa asked for my thoughts, but I don’t remember my reply or what was going through my mind. I didn’t know at the time that the combination of medullary thyroid carcinoma and pheochromocytoma strongly suggested the genetic disorder MEN 2, which I hadn’t heard of until only a few hours earlier during my talk with Dr. Rothman. On the other hand, it was possible that the pheochromocytoma alone was responsible for my elevated calcitonin level. Both of us took the elevator down to the basement, to a lab called CML Healthcare, where Dr. Safa personally arranged for an immediate ultrasound of my throat, jumping ahead of some of the other patients.
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| My exact point of view when I received the rather ghastly news on December 13, 2011. |
I didn’t learn the throat ultrasound results until the next day, December 14, when I motored to NYGH’s Branson site to verify the accuracy of my electronic home blood pressure monitor against Dr. Safa’s manual sphygmomanometer. He showed me the ultrasound report. Just as I had feared, "[t]here are multiple nodules [in] both sides of the thyroid. In the right lobe the two biggest nodules measured 1.4 cm, solid with calcification, and 1.2 cm; in the left lobe measuring 1.7 × 1.1 × 1 cm; it is solid with calcification. . . ." Both of these nodules had vascular blood flow. They would have to be biopsied, but Dr. Safa didn’t want me to worry about it in case it affected my blood pressure. (This advice was questionable, because I now had to worry about being worried.) Nonetheless, he requisitioned an urgent thyroid biopsy at NYGH, and asked me to phone NYGH’s ultrasound department to see if I could negotiate an early date. I called the next day, learning that ultrasound biopsies are performed only on Tuesdays and Thursdays and that I had been booked for 8:30 am on April 26, 2012 over four months in the future—though they said would reconsider the date after reviewing the results of my upcoming CT scan. There was also the possibility of getting in earlier due to a cancellation. Within a week, the hospital contacted me with a new biopsy date, January 5; somehow Dr. Safa, for whom even this date wasn’t soon enough, had intervened on my behalf. For this alone I might owe him my life.
(On the other hand, the biopsy might have been unnecessary or even hazardous, according to Medscape:
Fine-needle aspiration Avoid the removal of cells from thyroid masses for cytology in patients with type 2 multiple endocrine neoplasia (MEN 2) who have had their diagnosis previously confirmed by either genetic analysis or elevated calcitonin levels. These patients have an established diagnosis, and a biopsy increases the possibility of tumor spread. A fine-needle aspiration biopsy is primarily used in an index patient who presents with a thyroid nodule when the clinician considers the presence of medullary thyroid carcinoma to be unlikely [last updated Aug 1, 2012].I didn’t find this passage until afterwards, or I would have raised it with Dr. Safa. In any event, I presume that, in the context of my particular case, he made the correct decision.)
At 8:15 am, Friday, December 16, I was at NYGH for a neck/chest CT scan, rescheduled from two weeks earlier. While waiting, I chatted with the volunteer, an older gentleman from Scotland, about his world travels. I donned a hospital gown in a change cubicle before being led to a small office where a saline lock was inserted into my arm by a character of a nurse, who slapped my knees when he was amused (we sat facing each other). I confirmed with him, as Dr. Safa had instructed, that the contrast dye to be used was "pheo-friendly" (i.e., low-osmolar non-ionic); in fact, the CT people already knew about it, courtesy of Dr. Safa. I was then sent back to the CT waiting area. I was a bit self-conscious as I sat, exposed to traffic in the main corridor, clad in a goofy-looking gown with tubing in my arm; perhaps it’s strange, but I was uncomfortable looking like a "real" patient. After the scan, I delivered a copy of my December 13 neck ultrasound report to Dr. Zingel at his office, stopped at the LifeLabs in the same building to see about a blood test for chromogranin A (they too were unable to perform it), drove home, went to Dr. Safa’s Leslie Street office to pick up a prescription for the beta-blocker metoprolol and to have him check my blood pressure, drove to Christmas-crowded Costco (its dispensing fee is a competitive $3.89, even to non-members, vs. $10–$12 elsewhere) in an attempt to fill the metoprolol prescription (out of stock) and then to another pharmacy, returned home, traveled to see Dr. Safa again for a final BP check and to show him my own BP data, learned upon arriving home that Dr. Safa had called to inform me that I had left my laptop there, and drove back to the medical building on Leslie Street, for the third time that day, to retrieve my computer at the pharmacy to which he had entrusted it. My day was over when I arrived home at 6:50 pm.
On the Saturday before surgery, I started on the beta-blocker metoprolol, to further inhibit the effects of pheochromocytoma-induced catecholamine secretion, for adrenaline and noradrenaline operate by binding to α- and β- adrenergic receptors. Metoprolol, a β1-adrenergic antagonist, was much cheaper than its alpha-blocking counterpart phenoxybenzamine and more easily obtained. The 25-mg tablets had to be quartered, for I was to take 6.25 mg twice per day. My pill splitter wasn’t up to the task, but a utility knife sufficed. On Sunday, Dr. Safa phoned me to double the metoprolol dosage to half a tablet twice per day. On each of these last three days (Dec. 17–19), I drank 1.5 L of Gatorade® on Dr. Peters’ advice.
On Monday evening, my wife and I ate at our favorite steak house. It was my last meal, so to speak, for I was not permitted to eat or drink after midnight. I believe I slept well that night.
Part 2: This was supposed to be the winter of Steve
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.At 11 am on Tuesday morning, December 20, 2011, the last official day of autumn, my wife and I were met by my parents at NYGH’s patient registration office, where I was to be formally admitted. There was a delay when the computer system prevented admission processing because it already had my status as being an inpatient (perhaps because of my dealings with the inpatient pharmacy). Normally, the office serves three patients simultaneously, but because all staff now gravitated to the offending computer, no one was being processed, and the waiting area filled up. Eventually, the glitch was solved with a phone call, a cardboard ID bracelet was "locked" around my wrist, and we went upstairs to Day Surgery. (It’s actually for all surgery, so why the adjective?) A fellow behind the counter directed us to a rear area, which was carpeted and furnished with padded chairs. When a nurse called me, my wife and parents were shown into an inner-inner waiting room, and I was brought to one of several office-style cubicles near where we had just been sitting. Here, the nurse and I sat down, and she asked a few questions, confirmed my identity (my identity was confirmed almost endlessly), took vital signs (BP, pulse, oxygenation by means of a finger clip, and temperature via a wand that was passed up the side of my face and across my forehead), and gave me two different analgesic pills (I didn’t get a specific reason for the pills; it made me more nervous). I washed down the pills with some water. Then we stepped towards a cart stacked with folded linen, from which she selected a gown, loose string-drawn trousers, and bag-like slippers. She showed me to a nearby bank of tiny change rooms and gave me two plastic bags for my street clothing. In my new attire, I then joined my loved ones in the inner-inner waiting room, which was populated with other patients and their families. On one wall was a large flat-screen video monitor which displayed the status of all operations by number rather than patient name. I remember being in good spirits. I was called again, and this time I followed a nurse alone to a long room with patients, on gurneys, all of whom would be going home the same day. As directed, I lay upon a gurney. Nurses hovered about; one inserted a saline lock, and an IV might have been started (not sure). My wife and parents came in and we chatted and joked for a short time. Then I was wheeled away—feeling silly, since I was able-bodied—feet first through corridors and doors and around corners, until I was parked (and left alone) on one side of a long corridor with doors to various operating rooms. People in turquoise scrubs milled about. I exchanged hellos with everyone who walked by. Directly to my left, across the corridor, was the door to OR 11. The room was being prepared for me. As medical personnel came and went through the door, I could see more people inside. An alcove to the right of OR 11 was in fact a scrub room, with sink and foot-bars against the back wall. Above the sink, a red digital clock read 2:41 pm (if memory serves). A door in the left wall of this small room communicated with OR 11; a door on the right gave access to another operating room. As I waited, the doctors who would be involved in the operation came to talk to me individually. There was interest in my case, so the number of those present was perhaps larger than it otherwise would have been. At last, everything was ready; I rose from the gurney under my own power and was led into the operating room, where I was directed to the operating table. It had perpendicular arm extensions, resembling a lethal injection table. I was pleased to see that everything in the room appeared modern and clean. I climbed onto the table and lay on my back, talking all the while, and had a warm blanket thrown over me (there’s a blanket heater in the room). I think I remember an oxygen mask placed over my nose and mouth. In the weeks leading to this moment I speculated that my last thoughts before unconsciousness would be the possibility that I might not reawaken, that these would indeed be my last thoughts (sort of a loop). I had also read about anesthesia awareness, the horrific experience of your own surgery. Mercifully, none of these ideas occurred to me in the actual moments before my mind slipped away into nothingness.
—Lao Tzu
I awoke in a private ICU room on the sixth floor some nine hours later. The operation had been a success (I don’t remember how or when I learned this); my hypertension was cured, my sweating episodes were history, and severe headaches no longer threatened.
My ICU bed, worth tens of thousands of dollars according to a nurse, continually inflated and deflated at various points under me to prevent bed sores; I never had the presence of mind to calculate the inflation pattern. Several tubes now penetrated and emerged from bodily holes, both natural and man-made. A thin transparent oxygen line, which was looped around both ears, passed under my nose, where two short stubs jutted into my nostrils. I probably had an IV in my arm (can’t recall). An arterial catheter pierced my wrist to enable real-time monitoring of blood pressure. A central line had been stitched into my neck, whence it extended to my heart. A Foley catheter, with a bulb at its nether end inside my bladder, drained urine into a bedside plastic bag. Fortunately, it had been inserted during the operation while I was under general anesthesia. Also fortunately, it imparted no particular sensation—as long as it wasn’t tugged (ask me how I know)! None of the tubes were uncomfortable, nor were the four internally-sutured laparoscopic ports in my abdomen, through one of which my left adrenal gland had been bagged and extracted.
I don’t recall waking up, but soon afterwards an ECG was administered with a portable machine. This revealed, as Dr. Safa had suspected, that the recently-excised tumour had been responsible for the suspicion of WPW. A portable X-ray machine was wheeled in and aimed at my neck; this was to verify the placement of the central line vis-à-vis my heart.
My wife and parents came in at the first opportunity. During the surgery they had been waiting in the room with the flat-screen message board where I had left them; Dr. Peters had spoken with them there after the operation.
I was moved to another private ICU room. I must have slept at some point during the night, for I became aware of a black-shrouded gurney in the corridor (the intervening wall was glass) that wasn’t there before.
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| Central line, the day after left adrenalectomy. |
But greater misery was in store.
During the operation, my spleen, "which appeared to be quite enlarged" (surgeon’s operative report), had been torn iatrogenically, and there was a hematoma. Additional discomfort was caused by residual distension from the inflation of my abdomen with gas through a Veress needle during the surgery; because of this, the nurses frequently inquired whether I had been passing gas (hospital patients must be prepared to shift their threshold of dignity). En route to my new room on December 21 (the darkest day of the year), the gurney went over a pronounced seam in a doorway at full speed and the resulting jolt momentarily aggravated the pain in the left side of my abdomen. Unnecessary suffering was also caused by an inexplicably lengthy delay in receiving pain medication after my transfer from the ICU. Though pain medication (5 mg morphine bag intravenously) provided some relief, it could only be administered every four hours (the nurses weren’t permitted to alter this schedule regardless of my pleading) and its effects wore off early. That night (December 21–22) and the next was my worst time in hospital. I slept very little—if at all. I was alone, immobilized on my back (unable to turn onto my side or stomach), and usually in severe pain. All I could do was watch the hands of the wall clock crawl imperceptibly towards the next four-hour mark, when I would promptly push the call button for another dose. To make matters worse, the nurses didn’t always respond immediately. Sometimes there was a delay in actually obtaining the pain medication, causing needless suffering (I once waited an hour for Percocets after requesting them). But knowing I’d see my wife in the morning helped me through these dark hours.
On the afternoon of December 22, 2011, my nurse fed a tube into my stomach through my left nostril. This was likely because of postsurgical ileus (disruption of intestinal motility as a side effect of abdominal surgery). Thanks to my pronounced imagination, I am—or was at that time—particularly squeamish about invasive medical procedures. Yet I simply resigned myself to it, an attitude that was easier to attain than I might have predicted. Sometimes nervousness is a luxury of the imagination. The nasogastric (or NG) tube appeared alarmingly thick. I was instructed to swallow as the tube went down. This would help prevent it from slipping into a lung and also distracted me from the thought of gagging. The insertion procedure didn’t hurt but was somewhat unpleasant; the worst was when it reached the downward bend of my nasal passage, where there was a sort of ticklish sensation, the repellent effect of which was chiefly psychological. Once the tip passed this arch, the rest of the insertion was easy. The tube’s outer end was attached to a clear plastic canister mounted on the wall behind the bed. The apparatus used weak suction to gently remove my stomach contents, which were dark red because I hadn’t been eating. I could feel the presence of the tube in my throat when I swallowed, but this wasn’t upsetting. My dread had been largely unfounded. The next day I was given 40 mg of pantoprazole (intravenously), possibly to decrease gastric acid production caused by the NG tube.
I was up and walking on the same day, two days after the operation. For this, my catheter bag was tied to my IV stand (I had had a nurse tape the line to my thigh to help prevent tugging) and the NG tube was disconnected from the wall-mounted collection canister and clipped to my gown. I used my mum and the IV stand for support, though I could stand on my own. I would continue to walk at least once a day, usually to the amply-windowed elevator area at the end of the corridor. Room 532’s washroom was just large enough to accommodate the wide base of an IV stand; I wondered why space was apparently at such a premium considering that the hospital is adjacent to parkland and presumably could have been built or extended over more acreage and/or with more storeys.
Shirley, a physiotherapy nurse, visited me the next day and brought me a spirometer, a plastic device for strengthening lung function. I would seal my lips around the mouthpiece and inhale as hard as I could; airflow was measured by how many and how far each of the three spheres rose in their respective cylinders. I would announce my results as the number of balls I had sucked.
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| I’m a spirometer. Suck my balls. |
Lowry and I would converse from our respective beds. When we passed each other in the doorway one day, he declared, "so that’s what you look like standing up." As a joke, I challenged him to a race to see who would go home first; by amazing coincidence, we left within minutes of each other.
The NG tube was removed on Christmas Eve. Two Percocet (oxycodone and acetaminophen) tablets every four hours replaced intravenous morphine. Toradol was continued until Christmas morning. Dr. Clark Leiter, the hospital’s Chief of Surgery, said I would be discharged in the next few days, provided that I was able to eat. My urinary catheter was removed just before noon on Christmas; it was replaced with a plastic jug with an angled neck, perfect for urinating in bed (every man should have one).
At lunch on Boxing Day, I ate half an egg-salad sandwich and some garden salad with Italian dressing—my first solid food since the operation, six days earlier. Nonetheless, my appetite was nonexistent—which didn’t mean I was neutral on the subject. Rather, I was positively averse to eating and thus had to force myself; the half-sandwich took an hour to consume. At the same time, I drank my first coffee in a month; beverages were not a problem. My saline lock and IV line were removed and my wife took me to the nearby shower room to wash (the shower head is attached to the hose with no provision for mounting it to the wall, so patients showering alone have only one free hand). For supper I had half an omelet and a bowl of soup. Dr. Zahara Anwar discharged me at noon on the 27th, with a prescription for 20 Percocets and a stool softener, Soflax (docusate sodium). Despite the good people therein, I was happy to see the hospital disappear through the rear window of my wife’s car.
At home, my wife made sure I ate something at every mealtime, to which I didn’t look forward. My repugnance to food was not unlike that of a person who has just consumed a very large meal. Soup and fruit were somewhat palatable, and I drank a bottle of Ensure® or Boost® on most days. Otherwise, all I did was sleep and watch television—and monitor the clock in anticipation of my next Percocet. Apart from the painkillers, a measure of relief was obtained by sitting forward with my elbows on my knees. Uncharacteristically, I didn’t read or touch a computer, let alone answer my growing email backlog. I tried the spirometer regularly, but my lung power remained deficient and my breathing was shallow. I’m not one to complain, but life was miserable.
My Percocet supply ran out by Friday, December 30, three days after my hospital discharge. Pain from my splenic hematoma was increasing, and, combined with my general weakness, getting out of bed was a chore. I would systematically maneuver my feet over the side of the bed and work my courage to sit up, a process which strained my abdominal muscles (located near my trauma site). Worse, any exertion brought on a new, acute stabbing pain in my lower left side, which prompted me to see Dr. Zingel. My wife drove me to his office on Friday afternoon. When he had me lie back on his examining table, the resultant agony precipitated short, rapid breaths, a condition he termed splinting. He advised me to go to hospital emergency, and handed me a note describing my situation along with some supporting reports to give to emergency staff. Back at the car, I discovered that holding my breath during exertion prevented the pain—except when leaning back.
My wife and I arrived at NYGH’s crowded emergency department at about 3:30 pm. Despite my own condition, I empathized with a teenage girl clearly in pain, who, with her parents, were also subjected to a long wait; we later overheard that she had been diagnosed with appendicitis by emergency personnel and would require surgery. Hours later, after waiting in three different areas (not as easy when weakened), I was given 6 mg of morphine via an IV in a curtained treatment alcove. I remember crying out in pain while being helped by an emergency doctor to recline on the gurney—this shocked and even embarrassed me. I was taken to radiology for X-rays of my chest and abdomen at 9:30 pm. According to the resultant report, I had "small to moderate sized left pleural effusion" (fluid around lung); "atelectatic [pertaining to collapse of alveolar lung tissue] changes … in the left lower lobe with obscuration of left hemidiaphragm [left half of diaphragm] and air bronchograms … in the retrocardiac location [behind the heart]". I was re-admitted as an inpatient, but didn’t get a bed until late at night; weeks later, a nurse in another department told me there was an unusually large influx of patients on that date. My new room was the semi-private 508, across the main corridor from my previous quarters. This time my bed was nearest the window. As a returning patient, I was subject to a disease-screening routine for which I had to provide nostril and anal swabs. Blood was taken several times per day, even after midnight. I was given single Percocets and Soflax capsules.
I drank a cup of Telebrix® and water the next morning in preparation for an abdominal CT scan at noon, to which I was taken on a gurney. I had to be helped onto the gurney, the CT table, back onto the gurney, and finally into my bed. This assistance consisted of full upper-body support while I reclined from the waist, without which I would experience the now-familiar stabbing pain. For the scan itself, contrast fluid was introduced into my veins and I had to hold my breath for up to twenty seconds; this was trying given my lung-related condition. Soon after getting back to my room, my nurse confronted me with a new horror: an injection of blood thinner into my right side in order to help prevent bedsores. I braced myself as she pinched abdominal fat and inserted the short, thin needle—but to my surprise there was virtually no pain. I would have one of these injections every day at noon. For lunch I had applesauce, my first food in 36 hours. A Dr. Hiroki Kosugi came to report the CT findings during the afternoon: mild pleural effusion of my left lung. There was a "mild amount of subphrenic perisplenic fluid", "left lower lobe atelectasis and consolidation, [which] appears complete", "mild [to] moderate subsegmental atelectasis [in the] right base", and "small [to] moderate amount of fluid tracking into the pelvis and right paracolic gutter [space between ascending colon and abdominal wall]" (CT scan report). According to my discharge summary (Dr. Maltinsky, Jan. 3, 2012), the scan also "showed a phlegmon [purulent inflammation] in the upper left quadrant [the area containing the spleen] that was not organized and no drainable collections were identified". In the early evening, I had my first bowel movement since before the surgery eleven days earlier; the nurses had been concerned, for general anesthesia suppresses bowel motility. It was a magnificent specimen, I proudly announced. Later I was given antibiotics to combat possible abdominal infection.
The next morning, the first day of 2012, Dr. George Maltinsky, who was in charge of the floor, came to my bedside and explained that my diaphragm had likely been irritated and that fluid had collected in my abdomen and around my left lung (pleural effusion). He advised me to use my spirometer ten times each hour, eat, and be as physically active as possible. My wife helped me shower at noon. Chest X-rays were taken at 4:30 pm; I had to lie on a metal table for one of the images, for which I needed assistance. The technicians were understanding and kind. These images showed that I had a "persisting small to moderate" collection of fluid in my left chest cavity, "associated with a collapse of the left lower lobe [of the lung] … with areas of subsegmental atelectasis [which has] progressed [since December 20]" (X-ray report), confirming the pleural effusion diagnosis from the previous day.
Dr. Maltinsky returned to my room the next day. After conferring with Dr. Nasir Jebali of the radiology department, it had been concluded that the fluid in my chest should be drained, a procedure termed thoracentesis. Accordingly, I was wheeled on a gurney to the interventional radiology department, accompanied my wife. While parked in the corridor, a friendly nurse/technician explained the procedure in greater detail and answered my questions. There was a risk of lung collapse, the prospect of which terrified me, thanks to my unruly imagination. Moreover, the very idea of a needle being inserted between my ribs and through to my lung certainly didn’t seem like fun. My wife was not allowed to be present. I was wheeled thus alone through the adjacent door into a room that was mostly occupied by a large X-ray apparatus. I rose from my gurney and was made to sit in the middle of the long side of another gurney with my feet on a footrest; I leaned slightly forward and rested my arms on pillows that had been placed on the end of an elevated X-ray table that was perpendicular to the gurney. My back was then uncovered. The strains of "Ballroom Blitz" by Sweet floated in from the adjoining office, a comforting reminder of the mundane. Dr. Jebali used ultrasound to locate the fluid surrounding my left lung. Strangely, there was little to be found, and to my relief the thoracentesis was aborted. Once again aboard my gurney in the corridor, and while waiting to be transported to my room, my wife and I chatted with the nurse. I mentioned to her that couldn’t remember the exact date of my looming thyroid biopsy. She checked and said it had been cancelled; this gave us hope that my elevated serum calcitonin level had been caused by the recently-excised pheochromocytoma, a realistic possibility, and hence that thyroid cancer had been ruled out.
During this, my second, hospital stay, my room was shared first by a friendly, polite young man, who was discharged on Sunday (January 1), and then by an elderly Russian gentleman, a distinguished engineer in his day, but who was now suffering from a painful bladder stone and dementia (requiring that he be continuously restrained to his bed); his legs previously had been amputated due to diabetes. All this I overheard through the intervening curtain—I had little choice in the matter. Remarkably, I soon ceased to notice his near-continuous quasi-Russian ranting, babbling, and the sounds of his struggles. His omnipresent family was loving, dedicated, and protective—and considerate: one member walked around the curtain to apologize to me for his disruptive behaviour; I assured her—truthfully—that I wasn’t bothered. During this stay, my wife gave me an Android smartphone, which was useful for my situation, for the landline phone at each bed participated in the room’s party line. We exchanged text messages when we were separated by the night. Also useful was my laptop computer; I used it with headphones to listen to music at night (great for my spirits), and my wife and I used it to watch DVD movies that she brought, such as Collateral and Ridley Scott’s Robin Hood.
To reach the bathroom or to leave the room, I had to move past my roommate’s bed, which was segregated from my own at all times by a drawn curtain. On Monday or Tuesday, I held my breath while leaving the room, for the old man’s half had become pervaded with a sweet but repulsive odour. Nonetheless, the effort started me to retching anyway. Mysteriously, my wife could not detect it, and I’m not sure if anyone else noticed it, either. Perhaps it was in my head, an incredible olfactory illusion. But the retching on this and future occasions was real. For the next three or four weeks, I would spontaneously retch, usually several times per day, though never actually vomiting. I could detect no pattern in its incidence, and eventually concluded that it was at least partly, if not wholly, psychological.
I was discharged in the late afternoon of Tuesday, January 3 by a Dr. Jamini Sapru, on condition that I see Dr. Peters when he returned from vacation the following week. And because I had already reported to the hospital’s emergency department, she trusted me as an outpatient to do the right thing should problems arise. I was supplied with two antibiotic prescriptions: four capsules of metronidazole (500 mg) and four tablets of ciprofloxacin (500 mg), each to be taken every twelve hours. Once again I sat in a cushioned chair in the main lobby, which faced away from the tall outer windows (making it difficult for patients to watch for their rides), while my wife brought her car around, and again I silently bid adieu to the hospital with its tall smokestack, bordered on three sides by busy roads and on the fourth by the Don River, peacefully nestled in a wooded ravine.
The next day I weighed myself at home: 169.0 pounds, 11 less than my pre-operative mass. Later, my wife drove me to see Dr. Safa at NYGH’s Branson site for matters relating to my forthcoming thyroid biopsy, which was scheduled for the next day. (Its earlier cancellation had been a mistake.) My energy level was severely depleted, causing me to walk very slowly, and I retched in the main entranceway. I sat in a chair just past the "urgent care" department for a minute, and then we walked to the cafeteria a little further on, where I rested while my wife got a coffee and sat beside me. We then proceeded to the small office in the Diabetes Education Centre where Dr. Safa councils patients. He was with a patient, so we waited in chairs in the corridor; I was so drained that I had to lean over. Although Dr. Safa had personally delivered to me, on Monday while I was in hospital, a typed letter addressed to the ultrasound biopsy team directing them to stain the cell sample a certain way, he wanted me to directly remind them of his instructions. Seeing my wilted state, he also took my blood pressure; it was 80 over 50—quite low. Consequently, he filled out a form explaining my situation and requesting that I be intravenously administered two consecutive bags of saline solution, and sent me downstairs with it to "urgent care" (a sort of light-duty emergency department). I registered there and waited for an hour or longer, lolling on the seat and sometimes leaning forward, sometimes leaning back with my legs stretched out, my head frequently on my wife’s shoulder. Finally, we were admitted into the inner area and taken to a treatment room. Lacking the energy to sit, I decided to lie on the gurney, and feeling cold, had my wife cover me with a blanket. After another wait, and a phone call to Dr. Safa when the initial nurse balked at being commanded by Dr. Safa’s treatment directions in the absence of confirmation by a Branson doctor, but who wanted to start a saline IV anyway (somewhat in the vein of Kafka), a kindly nurse named Ingrid arrived and got the job done. The saline solution felt cool as it flowed into my veins, and after two bags I did regain some energy. A Dr. Brian Larkin came in to talk to me and ordered chest X-rays, which were taken in a room down the hall, deeper in the urgent care complex (and past a gurney with restraining straps—scary). After more waiting, in a different set of chairs, during which my vitality began to ebb again, the doctor came over and reported his findings, which were that I had some fluid around my left lung. By the time we left the facility, it was dark and I felt that my time to relax at home before the next day’s biopsy had been compromised. As we drove home along Finch Avenue East, I experienced another retching episode, and, thinking I was going to vomit (a dreadful possibility for a guy who believes that one must never so much as touch someone else’s car, let alone soil the interior), had my wife pull over onto a side street (likely Dudley Avenue); fortunately, I kept my stomach contents where they belonged, which also prevented further dehydration.
We were both at NYGH the next morning for my fine-needle aspiration (FNA) thyroid biopsy. Actually, there were to be two: one for each nodule on my thyroid gland. We were just getting comfortable in the ultrasound waiting area when a nurse called me away to a nearby room. It was medium-sized with a gurney placed diagonally in the centre; an ultrasound machine stood on the other side of the gurney, closer to the head end, identified as such by a pillow. I was asked to remove my shirt and put on the standard hospital gown that had been sitting, folded, on top of the gurney. She then explained the procedure; the risks, mainly consisting of infection, were negligible, though I might suffer bruising. In reviewing my notes the night before to verify the appointment details, I saw that I was supposed to avoid blood thinners (plus Aspirin® and Advil®) during the five days prior to the biopsy—but I had been given daily blood thinner injections during my most recent hospitalization, which had ended only two days earlier. When I mentioned this to the nurse (I wanted to be on the safe side), she left the room to find out which blood thinner had been administered and whether it would jeopardize the procedure. As nervous as I was about the biopsy experience itself, which I had been dreading, perhaps childishly, all through the preceding three-week period, I was now more afraid that if the nodules were indeed cancerous, a cancellation of the procedure and its rebooking into the far future would risk metastasis and possibly my life—and needlessly, for shortages are only endemic to services that are monopolized by the state, and not only does health care not intrinsically require state involvement, but it is compromised by it. This worry proved groundless, for the nurse returned with the good news that the biopsy would proceed, for the blood thinner I had been given would not adversely affect it. I was instructed to lie on my back on the gurney, a still-uncomfortable maneuver given my condition at the time, but no longer agonizing. Soon a Dr. James Eliade and a cytotechnologist arrived. I mentioned Dr. Safa’s written staining instructions, but they had already been informed about it. The doctor, the nurse, and the cytotechnologist, who would be examining the cells with a microscope during the procedure to ascertain whether each extracted tissue sample was sufficient, were all friendly and helped to put me at ease. Nevertheless, I closed my eyes during the procedure, not wanting to see the various needles or catch a glimpse of the proper red stuff. I believe my throat was swabbed with an antiseptic. I felt a pinch from the needle delivering the local anesthetic (2% lidocaine without epinephrine)—not painful. And then the hollow biopsy needle, which the doctor explained was of the finest gauge (25), guided by ultrasound, went in; this wasn’t painful either, but did produce a sensation of mild pressure. After a few minutes, during which the needle was withdrawn and reinserted several times, and which was interwoven with conversation between them and me and technical talk amongst them, an adequate sample was obtained. Then, the entire procedure was repeated for the nodule on the left side of my throat. The doctor remarked that I was uncommonly stoic; the perfect patient. My throat was then covered with a dressing, everybody left the room, and I changed back into my shirt in privacy. Far from being a horrifying experience, I remember being in good spirits. My wife then drove me home. There were no after effects, and the whole thing was quite easy, if not slightly unpleasant: the feeling of pressure attending the manipulation of the biopsy needle was uncomfortable, but was far from living up to the dread conjured up by my imagination. FNA, indeed.
The office of Dr. Dwight Lyon, a specialist in otolaryngology (head and neck surgery, sometimes referred to as ENT for ear, nose, and throat), called me at home the next day (January 6) to schedule an appointment for the following week to discuss the biopsy results.
An alarming new pain sometimes greeted me after sitting up at my bedside. It was sharp and seemed to grip my heart, causing me to pause until it vanished, 5 to 10 seconds later. On Monday, January 9, my dad picked me up (my wife was back to work) and drove me to Dr. Zingel, who took blood, sent me down the hall to a LifeLabs to deliver the blood vials and to undergo an ECG for my chest pains (negative), directed me to another facility in the building for chest X-rays for my pleural effusion (fluid collection observed), and prescribed 30 more Percocets (these were 5 mg oxycodone hydrochloride and 325 mg acetaminophen; not sure what the previous prescriptions were for, as I’ve lost the earlier bottles). My dad drove me to see Dr. Peters at his Sheppard Avenue East office the next day to follow-up on my pleural effusion and to fulfill my promise to Dr. Sapru, who was also present. Dr. Peters arranged for a CT scan of my chest for the following week. My mass was 165 lb. (74.8 kg) the next day.
My wife took me to NYGH’s Branson site on Thursday, January 12 to meet with Dr. Lyon. As suspected, the biopsy had revealed that I had medullary thyroid carcinoma, which was an "aggressive" disease with a poor prognosis. It was likely that I had MEN, probably Type 2. Fortunately, the tumours were small and had been detected early. My thyroid gland would have to be removed, along with nearby lymph nodes and probably all four parathyroid glands (small endocrine glands, which regulate calcium levels, usually located near the thyroid gland). I would have to be monitored via blood and ultrasound tests for endocrine tumours for the rest of my life and would require lifelong thyroid hormone (levothyroxine) replacement therapy; I might need calcium replacement therapy. He said he would refer me to a surgeon based on earliest availability, mentioning doctors at Mount Sinai Hospital and Sunnybrook Hospital, both in Toronto. I would be kept for 2–3 days after the operation, to monitor my calcium levels, and recovery would take 2–3 weeks. He also discussed the risks, which were bleeding, infection, and a greater than 1% probability of damage to nerves associated with my throat, shoulder, and tongue. I wasn’t sure if I was healthy enough to withstand another major operation so soon, but understood that delay was hazardous to my survival.
A finding of the surgical pathology report (dated January 4), as revealed to my wife and me by Dr. Safa on Friday at his office, was that my pheochromocytoma had demonstrated "focal capsule invasion into periadrenal fat and [was] extending very close to margin" and that "[s]everal histological features associated with malignancy were seen and include capsule invasion with extension into adipose tissue [fat] (focal and limited), and focal areas of diffuse growth, large nests and tumour spindling. No definite vascular invasion was seen. The diagnosis of malignancy requires demonstration of metastatic disease. Clinical correlation is required". Thus, he wanted me to see Dr. Stefania Maklakiewicz, a medical oncologist at Toronto’s Princess Margaret Cancer Centre hospital. Furthermore, he said, my nemesis was probably multiple endocrine neoplasia (MEN) Type 2A, which is usually hereditary, making predictive genetic testing advisable for my parents and sister.
The next three days were spent quietly at home, watching television, ingesting Percocets (one every seven hours or so), and forcing myself to eat. Lacking my normal strength, I rushed my showers, and would often start retching by the end of them.
My dad chauffeured me to the next CT scan, of my chest, abdomen, and pelvis—to monitor my ongoing pleural effusion—on the morning of January 17 at NYGH. Because contrast dye was used, a saline lock was inserted beforehand—no longer a concern in light of recent events. During the scan I struggled to avoid retching. Afterwards, the saline lock was removed and I was given a glass of juice to help flush the contrast dye from my kidneys. My wife joined my dad and me to await Dr. Peters’ assessment of the scan results, which were that my pleural fluid level had increased. I was then taken away to the same room as before to have it drained by Dr. Jebali. This time the thoracentesis went ahead. Ultrasound was used to identify the precise location of the fluid collection. Then, the skin of my back was wiped with antiseptic. I don’t remember if a topical anesthetic was applied, but the left side of my back was injected with a local anesthetic. This caused a mild pinching sensation only. My back was covered with a drape that had a hole for the target area. A hollow needle was then inserted between two ribs and into the pleural cavity surrounding my left lung. I was afraid that the anesthetic might not be effective where the needle penetrated furthest, but my fears were baseless; there was a mild sensation, but it wasn’t pain. The needle/catheter was attached to a tube, permitting the pleural fluid, which looked like foamy ale, to drain into a jar placed beside me. Dr. Jebali left the room and I chatted with a nurse who stayed with me and replaced the jar when it filled. After about five minutes, I reported feeling an ache in my left shoulder (a referred pain) and the nurse immediately withdrew the catheter and applied a dressing. Although 1.2 litres had been drained, I didn’t feel any relief. In fact, my discomfort increased. I had another retching fit on the way out of the hospital.
But the day wasn’t over. My wife took over chauffeur duties from my dad for my early afternoon meeting with Dr. Sanjib Kumar at NYGH’s Branson site, where he shares office space with Dr. Lyon, the referring doctor. Dr. Kumar has a youthful appearance and is indeed quite young, having become an otolaryngology specialist (Clinical Fellow) in June 2009, scarcely two and a half years previously. On the other hand, he specializes in oncology, and had already accumulated considerable field experience. He told us that medullary thyroid carcinoma (MTC) caused by MEN 2A spreads easily and tends to recur. He would be performing a total thyroidectomy via an 8-cm (3.15-inch) incision, with removal of neighbouring lymph nodes. My parathyroid glands appeared to be disease-free (my calcium and parathyroid hormone levels were normal) and he didn’t believe in removing them prophylactically (10%–20% of MEN 2A patients suffer primary hyperparathyroidism), but would consult the tumour board for guidance. If they were to be removed after all, one might be implanted into my forearm; this to permit easy removal with local anesthetic should hyperparathyroidism subsequently occur. An autotransplanted parathyroid gland would grow blood vessels and probably begin functioning after several months. No chemo- or radiotherapy would be necessary after the surgery, but I would be hospitalized for 2–3 days afterwards, mirroring Dr. Lyon’s estimate, until my calcium levels were evaluated. The surgery was tentatively scheduled for February 6, twenty days hence.
My wife took notes while the doctor spoke; in my condition, I was not quite able to understand the case for leaving my parathyroids intact. Dr. Kumar then directed me to the dental-style ENT chair in the corner and started feeling my neck—which caused a retching spell. I called for a bucket, but didn’t vomit. Dr. Kumar next inquired if Dr. Lyon had looked at my vocal cords. In response to my negative answer, he produced a flexible fibreoptic laryngoscope, a black, handheld device with a long thin wire, and announced that he was going to insert it into my nose and down my throat. Although the NG tube, which was pushed along the same pathway only 26 days earlier, was fatter and extended all the way to my stomach, I must have forgotten about it, for I was now seized by horror—did I mention I was body-squeamish? But first he sprayed an anesthetic into my nostril and told me to sniff it deeper into my nasal passage. My wife gripped my hand, and as the laryngoscope went in, I recoiled against the headrest. But it was only mildly unpleasant, and in retrospect nothing to get upset about; sometimes the mind is the prime antagonist. With the laryngoscope in my throat, Dr. Kumar examined my vocal cords as I used them to make sounds like, "ahhhh".
Three days later, on Friday, January 20, my dad picked me up and drove me to my family physician, Dr. Zingel. I was sent down the hall for another chest X-ray. To our dismay, there was more fluid surrounding my left lung now than before Tuesday’s thoracentesis. This time I was able to see the images, but because they couldn’t be digitally transmitted, Dr. Zingel made me a pen-and-paper sketch instead, and again advised me to go to emergency. I remember sitting beside my dad in the doctor’s waiting room, sipping from a can of iced tea that Dee, his receptionist, had provided out of compassion (I was probably slumped in my seat), which at that time was delicious.
My dad and I arrived at NYGH’s emergency department at 1:40 pm. Twenty minutes later I was given an ECG in a small room near the triage desk, and then sent back to the main waiting area. Soon I was led to a treatment alcove in the inner emergency area, accompanied by my dad; my wife eventually joined us there. Sitting upright on the gurney was difficult, so we raised the head end and my wife helped me lie back on it. A nurse arrived to insert a saline lock and take blood, but after a few pokes she summoned a colleague, who also failed. A third nurse succeeded in getting blood. I was attended by a Dr. Bruce Lakatos, a Dr. Nguyen, and a third doctor. A chest X-ray was taken, and sometime after 7 pm I was wheeled to room 340 for an overnight stay. The plan was for me to undergo another thoracentesis sometime during the weekend. My room was in the palliative care ward, and the other bed was briefly unoccupied before it was assigned to a feisty woman who’d spent days in emergency waiting for a bed; I learned she’d been to several hospitals, had a brain tumour and lung cancer, and described her pain as being an eight on the hospital’s subjective pain scale, where zero is pain-free and ten is the worst ever experienced. She didn’t seem to be suffering, so perhaps she was very strong. I advised her to ask for Percocets, which she’d never tried; I believe she did find some relief with them. I smuggled in and consumed two Percocets during my stay, not wanting to risk delay or denial by the staff.
More blood was drawn the next morning (Saturday), and I was discharged at noon by a Dr. Ian Clayton, who explained that my recurrent pleural effusion was almost certainly caused by splenic hematoma from my surgery a month earlier. I also discovered that the hospital did not perform thoracenteses during the weekend, but as part of my discharge instructions, Dr. Clayton provided the phone number for Interventional Radiology so I could arrange an outpatient pleural tap during the week and referred me to the hospital’s Medical Surgical Clinic for outpatient follow-up of my pleural effusion. This meant that this third hospitalization was unnecessary and it denied a bed to a more deserving patient (monopolies tend to produce shortages, as noted earlier). I wished my roommate luck and my wife drove me home.
On Monday, January 23, when my upcoming thyroid surgery was only two weeks away, I was notified by Dr. Kumar’s office that a new date had been set: 8 am on January 26—three days hence! Given my present infirmity, I had doubts about my fitness for another major operation.
Dr. Peters called me at home the next morning, telling me not to worry. Like doctors Zingel and Safa, he had been closely following my case. I thanked him for his concern and support. In the afternoon, my dad drove me to NYGH for my thoracentesis. Though I also had an appointment for a throat ultrasound at Branson several hours later, the staff at NYGH’s ultrasound department kindly performed the neck scan themselves to spare me the extra trip. For the thoracentesis, I was taken to a deserted and lonely glassed-in waiting room across the corridor from the draining chamber, where I sat in a chair that was decidedly unergonomic in light of my physical state, until a young chap had me sign a clipboarded waiver for the procedure. During this second thoracentesis, again performed by Dr. Jebali, I retched and coughed, knocking the cannula loose and thus aborting the procedure after something like 900 mL had been drained. We left the hospital and my dad took me to see Dr. Zingel to get information about my patient history for my pre-op meeting the next day, but the visit turned into a mini-checkup out of concern about my readiness for surgery, less than 48 hours away.
On Wednesday, a day before the thyroid operation, my dad drove me to LifeLabs for more bloodwork before taking me to the hospital for my noon pre-op meeting. My wife met us at the pre-op registration waiting area, and my dad departed at my urging. After waiting in the pre-op area, we were both ushered into the office of nurse Patty, who weighed me (158.4 lb., or 71.9 kg, with shoes, pants, and shirt), took my vital signs, went over my paperwork, imparted information, and explained that to reduce the risk of blood clots during surgery I was advised to purchase a pair of anti-embolism compression stockings (available in the hospital’s pharmacy) and wear them to the hospital the next morning. I also provided swabs of my nostril and rear end, for which I used the nearby washroom. She brought me to another room for bloodwork and an ECG. Then, while my wife and I waited to see a Dr. Robert Olmert, an anesthesiologist, we visited patient registration and requested a private room (one bed), for which the charge was $280 per night. Dr. Olmert, concerned about my state, ordered more chest X-rays (the requisition was marked "stat" and there was little waiting), consulted with Dr. Peters on the phone, and was finally satisfied that the surgery could proceed. Meanwhile, I had a retching fit in his office. For much of this time, though, my wife and I sat in the comfortable chairs in the main pre-op waiting area, which also served the lab patients, but which was deserted at this time of day—and again I slumped, leaned on her shoulder, and frequently changed sitting positions. Before leaving the hospital, she purchased the stockings while I rested in a nearby padded chair.
On Thursday morning, January 26, my wife helped me put on the stockings. It was still dark at 6 am upon our arrival at the hospital. As before, I checked in at patient registration and went upstairs to the misnamed "day surgery" registration desk, and thence to the inner waiting area. We watched a family whose little boy was to have an operation. Soon I was called by a nurse to one of the office cubicles to verify my identity, have vital signs taken, and answer questions. She directed me to a changing closet where I put on the standard hospital outfit. I then sat with my wife in the inner-inner waiting lounge with the surgery status board; my parents would arrive later. Other patients with loved ones also waited for their turns. A nurse came at 7:30 am to take me (and another patient) away—but not before I kissed my wife goodbye. While the three of us walked down a set of corridors I spoke with the other patient to break the silence. Finally, the nurse stopped at a gurney in the corridor upon which I was to await surgery; she raised its head end to my liking, placed a blanket over me, and escorted the other patient further down the corridor to another gurney. To my left, across the corridor, was my assigned OR (different than before); on my right was a large window, through which I could see the hospital’s multilevel parking garage in the approaching dawn. I watched several cars move through it, and wondered about the people in them. Dr. Kumar came to see me; he said that because my calcium levels had recently been fluctuating, a possible sign of parathyroid hyperplasia—the third spike of the MEN 2A trident, which appears in up to 20% of sufferers—the decision about whether to remove them would be made during the operation. The anesthesiologist arrived and talked to me about certain possible complications and contingencies. I walked into the operating room and clambered onto the table, and after some small talk, the anesthesiologist started an IV on my right hand and a mask was placed over my nose and mouth, from which I breathed oxygen. There was talking and activity for several minutes before I lost consciousness.
I woke up in recovery at 2 pm, six-and-a-half hours later. Dr. Kumar was soon with me for a short time, saying a la Kafka that I wouldn’t remember his presence on this particular occasion. My throat was sore, especially when swallowing, but the discomfort was mild, considering. My legs were enclosed in sleeves that were continually inflated and deflated by a machine (intermittent pneumatic compression, or IPC). Apart from an IV in my hand delivering morphine and a Foley urinary catheter, a Jackson-Pratt drain tube emerged from a spot near my left collar bone and terminated in a clear, rubberlike, semi-collapsed bulb with graduated volumetric markings, designed to draw excess blood and fluid from my surgical site by means of simple suction. I remained in recovery until a room became available, almost three hours later—yet during this time, most or all of the other patients in the recovery area were wheeled out in turn, presumably to their own rooms. I didn’t physically move at all during this period but watched and listened to the activity around me; I may have dozed from time to time. The nurses who attended me were kind and gentle.
At 5:45 pm I was wheeled, fully conscious, to the now-familiar fifth-floor surgical ward, but instead of a private room as requested, my bed was in room 527, which housed three other—occupied—beds, one in each corner. Nonetheless, the other patients and their visitors were quiet, and each bed was segregated by privacy curtains that collectively quartered the room except for a central area that connected the entrance with its adjoining washroom to the sole window in the far wall. My appointed bed was the first one on the left. Above the foot of each bed hung a flat screen television that was attached to the ceiling outside its respective privacy curtain. A shortage of electronic IV pumps meant that I had a gravity drip for the time being; we appropriated an electronic unit from the corridor several hours later. The room was at the end of a corridor at some distance from the nurse’s station, and therefore all the quieter.
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| Several hours after thyroidectomy and feeling good. |
To monitor my serum calcium level, for which the desired range was 2.15 to 2.55 mmol/L, blood was taken regularly, at approximately 2 am, 6 am, 2 pm, and 6 pm every day. Elevated at first, my serum calcium soon dropped to normal levels—whereupon I was given a calcium supplement—and had fallen to the low end of normal (2.16 mmol/L) on the day I left the hospital.
I ate jello at 6:15 pm on the day of surgery. My urinary catheter was removed and I was taken off morphine the next morning. For pain relief I was given Atasol®-30 (equivalent in codeine strength, 30 mg, to Tylenol 3®) and Extra Strength Tylenol® (500 mg acetaminophen). My throat was sore, as expected, which was most noticeable when swallowing. My upper buttocks were sore from, I presume, time spent flat on my back during the long operation and from the uncomfortable hospital bed (thin mattress), which was always adjusted so I could sit, transferring the mass of my upper body to my lower half; this soreness remained for weeks. I was subjected to daily anticoagulant injections and the beginnings of lifelong thyroid hormone replacement therapy—in pill form.
Within hours of the operation my appetite had returned—at long last. The bitter irony was that I wouldn’t get permission to eat solid food until the following day. In the meantime, I distrusted the authenticity of my renewed hunger, which had been absent for more than five weeks. To confirm my reawakened gastrointestinal urgings, my devoted wife ventured out into an ice storm the next evening and brought me a massive Lick’s® hamburger, french fries ("freedom fries" to bloodthirsty partisans), and pop. It is unlikely that the Percocets were responsible for my appetite suppression (as has been suggested), which began December 20, for I hadn’t taken any from January 2 to January 8, and my last Percocet was ingested only about 24 hours before I regained my appetite. In addition, my pleural effusion symptoms had largely subsided after the surgery; I felt much better. A few days later Dr. Sapru told me she had been speaking to Dr. Peters about my sudden recovery, and the suspicion was that the sufflation of my lungs by the ventilator during the thyroidectomy had driven the pleural fluid aside, straightening pockets in my lungs, or something like that—I don’t remember her words. This may have also restored my appetite.
A word about visitors. My wife, whom I love very much, was with me all day, every day, and my parents also visited frequently throughout my hospital stays. Other visitors included my sister and her family, my grandfather (my sole surviving grandparent), and my wife’s parents and sister, but not my aunts, uncles, or cousins—and hardly any friends. Other patients, too, seemed to be visited almost exclusively by relatives. This was unexpected, for I had thought bonds of friendship were at least as strong as those of blood, given that we choose our friends. Rather than think less of the friends who didn’t visit or send cards, I think more of those who did. People, visit your friends and loved ones who are stuck in hospital; you’re mobile, they aren’t. They’re scared, possibly lonely, and grateful for your company, even if your visit is short. It lets them know that they matter to you, that we’re all somehow together in this otherwise indifferent universe.
Dr. Kumar came to my bedside several times and finally discharged me from the hospital at 11 am on Sunday, January 29, just after I had given my lunch order; I forgot about lunch in my excitement and we were gone before it was delivered. We also missed Dr. Zingel, who, I later found out, was on his way to visit. I was told that in the event of tingling in the cheeks or extremities, which was a sign of hypocalcemia, I should report to emergency for intravenous calcium infusion.
On the way out, I thanked Donna, my nurse during the past few days, who seemed to take a special interest in me (but perhaps all her patients receive the same impression), and who recognized me from one of my previous hospital stays and, remarkably, immediately discerned that I had lost mass (25 lb., or 11.3 kg) during the interim—making me harder to recognize.
Once again I silently bade a happy farewell to the hospital from the passenger seat of my wife’s car. The day was crisp and sunny. We stopped at a drug store to fill prescriptions for the synthetic thyroid hormone levothyroxine sodium (0.1 mg tablets) and the analgesic ratio-Lenoltec No. 3 (containing 30 mg codeine), which I took for the next few days for discomfort while swallowing and for the sore patches on my upper buttocks, as mentioned earlier.
I was feeling good enough to drive, but wasn’t able to turn my head sufficiently to see because of my neck incision, so my dad picked me up and took me to see Dr. Kumar at his office on Wednesday, February 1 for the removal of the tape and stitches on my neck (a bit of stinging) and the metal staples on my left forearm (easy and painless). Afterwards, my dad drove me to my parents’ house where my wife joined us later for supper.
I was at NYGH the next day, courtesy of my dad, for chest X-rays and a consultation with Dr. Sagar Atwal, an internal medicine specialist, at the hospital’s Medical Surgical Clinic, to monitor my ongoing pleural effusion. Imaging showed that my fluid level was modest, and I was booked for a repeat appointment in two weeks.
On February 6, I drove a vehicle for the first time since before my December 20 operation—a long hiatus for a car nut. On this excursion I picked up a now-familiar orange 24-hour urine collection jug from LifeLabs for the measurement of my catecholamine and metanephrine levels to ensure that there was no residual pheochromocytoma. Having avoided the usual foods and ingredients for the past three days, I began the collection the same morning.
My car battery, which had been sitting for almost seven-and-a-half weeks, and which already had charging problems, failed to start my Toyota the next morning. My wife took me to buy a new battery in the afternoon. Loss of muscle mass over the preceding weeks made lifting and carrying the old and new units difficult (unusually, the defunct battery had no carry strap, adding to my woes). Despite being assured by Canadian Tire® automotive department personnel, backed by an online parts database, that the new Motomaster-brand battery would fit my car, it wasn’t tall enough to match the threads on the factory hold-down bolts; I wasn’t able to secure it adequately until later.
Carless though able to drive, I was conveyed by my dad on February 8 to the Leslie Street medical building where I dropped off the filled urine jug at LifeLabs and saw Dr. Kumar. My wife, who met us there, held my hand as Dr. Kumar inspected my vocal cords—I was still unaccountably squeamish about having the flexible laryngoscope inserted into my nose—while I intoned vowel sounds. At the conclusion of the procedure, my aversion to it melted away and I felt silly for having dreaded it. I jokingly asked if he’d been practicing with the device, for I hardly felt a thing despite the anesthetic only taking effect several minutes after it was over. But more importantly, he verified that my left vocal cord was paralyzed in the closed position—not a surprise given the known risk of thyroidectomy-related nerve damage and my recent discovery at a steak restaurant that I wasn’t able to raise my voice over the noisy crowd to communicate with the people at my table. Friends had also commented that my voice seemed hoarse. Dr. Kumar opined that my vocal cord would heal over the coming months.
Dr. Safa called me a week later to report urine analysis findings: my catecholamine levels were normal, but metanephrine and normetanephrine results were still pending. The next day I posed for chest X-rays at NYGH and went downstairs to see Dr. Atwal at the Med/Surg Clinic, who had reviewed the images and confirmed that my pleural effusion was abating. I saw Dr. Safa on February 17. Two weeks later, I was at LifeLabs to give blood for analysis of TSH (thyroid-stimulating hormone), free T4, serum calcium, phosphate, magnesium, and PTH (parathyroid hormone), as ordered by Dr. Safa.
On March 6, I met with Dr. Peters, the adrenalectomy surgeon, at his Sheppard Avenue office. He spoke highly of medical oncologist Dr. Stefania Maklakiewicz at Toronto’s Princess Margaret hospital, whom I was to consult because of the January 6 pathology report of my pheochromocytoma’s possible malignancy.
Later the same day I visited Dr. Safa, who increased my thyroid hormone dosage from 100 to 125 mcg/day, based on my TSH level and a body mass formula. I picked up a 24-hour urine collection jug and surrendered blood for testing. On March 14, blood was taken at NYGH for DNA analysis by a U.S. lab for Von Hippel–Lindau (VHL) disease.
Part 3: MEN: 2B or not 2B?
Dr. Rothman informed me on March 16 at NYGH that genetic analysis of the blood withdrawn on December 5 had verified the diagnosis of MEN 2A. (DNA testing for VHL was then cancelled.) The lab’s two-page report, dated March 1, described the precise genetic location of my mutation within the RET proto-oncogene, information useful for the testing of blood relatives for MEN 2A. Being autosomal dominant, any child of mine will have a 50% probability of inheriting it (and thus having his or her thyroid gland removed preventively). On the other hand, it is unlikely that I received MEN 2A from either of my aging parents, given that (1) it usually presents before middle age, (2) virtually all sufferers are afflicted with medullary thyroid cancer, and (3) tests of my mother’s DNA would prove to be negative (my father declined the test).
At Branson on the 20th, Dr. Kumar inspected my vocal cords for a third time (there was improvement) and said my thyroid tumour was designated as T2 (greater than 2 cm but no greater than 4 cm), N0 (no indication of lymph node metastasis), M0 (no sign of distant metastasis).
Months after my final hospital discharge, my immediate family and I celebrated what we called Christmas II—not for religious reasons, but because our traditional family event had been precluded by my extended hospitalization for spleen trauma.
On Wednesday March 28, I was at NYGH for chest X-rays, which were reviewed immediately by Dr. Atwal: the remaining pleural fluid was negligible. Two days later I was at Dr. Safa’s Leslie Street office for BP ("perfect"), neck and armpit (lymph node) examination, and to endure more bloodwork (TSH, free T4, serum calcium, and albumin) at the lab downstairs. I collected 1.4 L of urine during the 24-hour period spanning Saturday and Sunday, to measure catecholamines and metanephrines. An MRI of my abdomen and pelvis with contrast-medium injection via saline lock, for possible recrudescence of any residual or malignant pheochromocytoma, was conducted at NYGH on April 3.
The next day I visited Princess Margaret Cancer Centre hospital to see Dr. Maklakiewicz of the GI (Gastrointestinal) Clinic about my pheochromocytoma and to drop off CD copies of my pre-op MRI and CT scans for her review. While there, I also spoke with Dr. Ballard Duncan, a radiation oncologist. It being a fine spring day, and my weakened body in need of some exercise, I then strolled up University Ave. to Yonge and Bloor.
A Dr. Safa-ordered neck ultrasound was performed at NYGH on April 13. I was in downtown Toronto again on the 17th to see Dr. Beausoleil, who examined me and dispatched me to the seventh floor diabetes clinic to give blood to be forwarded to the Mayo Clinic in Minnesota for metanephrines analysis; for this I lay on a pillowless bed for 30 minutes beforehand in a quiet, darkened room. Dr. Beausoleil called the next day with the news that my recent 24-hour urine test (April 1), MRI (April 3), and ultrasound (April 13) were negative (she had been copied by Dr. Safa on the requisitions). After a 12-hour fast, blood was removed on the 24th at LifeLabs (1100 Sheppard E. location) for measurement of calcitonin, a tumour marker for medullary thyroid cancer, elevated levels of which could mean recurrence. More blood was extracted on April 30 (LifeLabs, Victoria Terrace) for TSH and free T4.
If you need bloodwork, make sure you know beforehand whether your test requires fasting, information not always indicated on the requisition. I'm told that being well hydrated makes the veins easier to find. The labs are often busiest first thing in the morning, when they are clogged by patients who have been fasting overnight. Some, like LifeLabs, allow appointments, which can be booked online. Some types of blood test are only conducted in the morning. Others are allowed only on certain days of the week, due to the company’s laboratory schedules. Nurses practiced in blood taking are going to find a vein on the first try. Ask for the cotton ball, which is pressed to the hypodermic site to absorb bleeding and prevent bruising, to be secured with paper tape, which comes off without stretching skin from the bone—unlike the plastic variety favoured in hospitals.
I saw Dr. Duncan again on May 2 (after waiting two hours past the appointment time due to "misplaced papers"). In his opinion, there was no need for abdominal radiotherapy. There was no evidence of cancer at the site, the precise location of the "capsule invasion" (surgical report of Jan. 4) was not known, and the intestines, which would have shifted to occupy space vacated by the excision of the left adrenal gland, would be adversely affected by the radiation. Annoyingly, my imaging CDs had been destroyed by personnel at Princess Margaret despite my earlier request for their return.
On the 5th, Dr. Safa increased my thyroid hormone replacement dosage from 125 mcg/day to 175 due to an increase of my TSH from 10 to 18.71 µIU/mL (reference range is roughly 0.35 to 5). The next day I yielded blood at Gamma-Dynacare (open Saturdays) for TSH, free T4, creatinine, serum thyroglobulin (a tumour marker), and anti-thyroglobulin antibodies (an immune system response to thyroglobulin). I saw Dr. Kumar on May 16.
On the same day, Dr. Safa called with the good news that my calcitonin level was negligible. When I saw him the next day, he requisitioned an MRI of my pituitary gland to rule out MEN 2B. He also requisitioned another battery of blood tests (serum calcium and serum PTH—and vitamin D, which cost $33). He phoned me on the 22nd to tell me that calcium and vitamin D were normal, but that PTH was quite elevated, which he determined was probably because the blood had been drawn from my left arm, inches from the site of my relocated parathyroid gland. He advised that I always offer my right arm in future. A week later (May 29), blood was accordingly retaken for PTH and calcium and on June 5 for TSH, free T4, serum thyroglobulin, and anti-thyroglobulin antibodies. He shared the results at his office on the 11th; TSH was 1.32 µIU/mL, down from 18.7 and well within the reference range. The rest were normal except for thyroglobulin, which was < 0.5 (ref. range 1.6–60.0); this was, I believe, a good result (anti-thyroglobulin was < 20, with a ref. range of < 40). My pituitary gland MRI, with contrast injection, was performed at NYGH on June 13; it was negative.
I saw Dr. Kumar for routine consultations on August 7 and November 7, 2012, and Dr. Safa on November 6. All prognostic signs were optimal. Bloodwork, a "thyroid bed and neck" ultrasound, and 24-hour urine collection were ordered by Dr. Safa. The ultrasound was carried out at CML Healthcare in the building housing Doctors Kumar and Safa on Leslie Street. On Nov. 15, Dr. Safa adjusted my thyroid hormone dosage from 175 to 150 mcg/day. On February 12, 2013, Dr. Safa joyfully reported that my calcitonin level was still low enough to be "undetectable". Of course, there were requisitions for blood, an MRI of my adrenal areas, an MRI of my abdominal regions, and a neck ultrasound—twice-yearly screenings that will be routine for the rest of my life. The adrenal MRI, to examine my right gland for pheochromocytoma and the site of my left for possible recurrence, was performed on March 21, 2013 at KMH Labs in Kitchener (Dr. Safa likes to use different labs, and the Kitchener location was the one nearest my employer); the nurse/technician there jabbed me 4 or 5 times before finding a vein for the contrast medium. The abdominal MRI was conducted at KMH Labs’ Markham location on Saturday, April 13, 2013; this time I was given 450 mL of banana-flavoured barium sulphate solution to drink beforehand.
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| Readi-Cat® oral suspension USP for computed tomography—with the refreshing taste of banana. |
Dr. Safa once told me that a full recovery from the two major operations and the spleen injury trauma would take months; he was correct. My voice eventually returned to normal. Weight loss caused a bony ass, which sometimes made sitting uncomfortable. The nails on my big toes developed ridges which I diagnosed as Beau’s lines, likely caused by trauma or malnutrition or both. For months after surgery, my finger joints would become sore after a period of immobility, as when waking up. From mid to late 2012, I had several invisible tongue sores, which may well have been unrelated to MEN. Between March and May 2012, the sole of my left foot developed two blisters, though I hadn’t gotten new footwear, and otherwise never get blisters; perhaps my walking mechanics had deviated after prolonged inactivity. Shortly after the adrenalectomy, shoulder-joint soreness would come and go until about August 2012, nine months later. Nevertheless, a certain range of motion still (as of this writing, November 2013) causes either shoulder joint to pop (one possible cause is the antibiotic ciprofloxacin, 2,000 mg of which I ingested in early 2012). My hip joints now occasionally pop, too. Similarly, as a reminder of my pleural effusion, I still experience a sore-lung sensation in my lower left side when inhaling sharply (as from a sudden yawn or the prelude to a sneeze, causing me to abort both), though this started to wane somewhat in May, 2013. In addition, I was for many months unable to fully bend my knees, and thus could not crouch or squat; attempts to gradually force them caused a sensation of pressure in the knee joints and the impression that something in them would give. For this, Dr. Kumar wrote a prescription for physiotherapy, which I ultimately declined to redeem.
Some closing remarks are in order, even if my story isn’t over.
My complaints about the nurses who cared for me are few. Once or twice they didn’t answer my summons or were late. (For my part I pushed the call button accidentally on several occasions.) Sometimes they were loud at night, making sleep difficult (I probably never slept for more than a few consecutive hours, which isn’t conducive to recovery). Sleep attempts were also hampered by their frequent intrusions to take vital signs (blood pressure, blood-oxygen, temperature) and blood, even in the middle of the night—though this couldn’t be helped, of course. On the other hand, their laughter and cheerful chatter made me feel better.
The worst things in the entire affair were the headaches, which were indescribably vicious; the spleen trauma, which made my life miserable for five weeks; and the new fear of metastasis (the distant future wasn’t a concern at the time of my more immediate troubles). Mere annoyances included wait times and hospital-monopoly parking fees, which must dissuade visitors at the margin.
The best things include being cured of both hypertension and profuse sweating. In addition, I emerged from it all largely unscathed. That my “pheo” presented first (which is unusual) led to the discovery of my symptom-free thyroid carcinoma in its early stages. Moreover, actual pain sensations can't really be remembered, so they no longer cause concern—whereas the good things remain with me. My vocabulary expanded. I’m now able to joke about cancer without running afoul of another disease: political correctness. Example: Cancer? I’ve never even met her!
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| Throat scar, seven months later (8/28/2012). |
Appendix I: Some statistics, because I like them
- ECGs: 7
- MRIs: 6
- CT scans: 5
- X-ray sessions: 11
- 24-hour urine tests: 6
- Ultrasounds: 10 (not including biopsies and thoracenteses)
- Biopsies: 2
- Blood taken: most of it
- Major surgical operations: 2
- Surgery scars: 7
- Organs removed: 4.5 (left adrenal gland, thyroid gland, 2.5 parathyroid glands)
- Thoracenteses: 2
- Foley (urinary) catheters: 2
- Central lines: 1
- NG intubations: 1
- Jackson-Pratt drains: 1
- Flexible laryngoscopies: 3
- No. of hospitals visited: 3 (NYGH general site, Branson site, Princess Margaret Cancer Centre)
- Emergency department visits: 2.5 (the fraction refers to Branson’s "urgent care" dept.)
- Inpatient hospitalizations: 4 (Dec. 20–27, 2011; Dec 30, 2011–Jan. 3, 2012; Jan. 20–21, 2012; Jan. 26–29, 2012)
- Hours slept while hospitalized: hardly any
- Hours spent in waiting rooms: many
- Prescription medications: more than a dozen
- No. of severe pheochromocytoma headaches: 6
- Body mass, pre-adrenalectomy: 180 lb.
- Lowest body mass, post-adrenalectomy: 148 lb.
- Average blood pressure, untreated (6/1/2010–9/6/2011): 136.9/94.3 (pulse: 86.7)
- Average blood pressure, post-adrenalectomy: 108.5/67.5 (pulse: 70.1)
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| Hospital bling. |
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| Drug cache. |
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