I had my first ever CT scan at Kappatani Hospital on Monday May 31. The procedure is pretty simple. You lie down on a kind of sliding frame and get slid into the CT machine, which looks like a reasonably large, airy tunnel, far more spacious than the MRI equivalent. Then the scan is taken. Then you get slid out of the machine.
The problem is that at a certain point you have to hold your breath. The Japanese radiographer made sure that I knew this, and he also made sure that I knew the Japanese for "Hold your breath," which is "Iki tomare".
Unfortunately, the radiographer neglected to teach me the Japanese for "Okay, you can start breathing now", and I neglected to ask.
Anyway, I got slid into the machine, and, at a certain point, a rather distorted synthesized voice said "Iki tomare". Obediently, I held my breath. And held it. And kept holding it. After a while, another voice said something else, but I had no idea what.
Had I been given the command to start breathing again? I had no idea. In the end, however, I had no option. I had to resume breathing. Explosively, I let out the air I had been holding, and started breathing again. At that point, the machine gave me some clue indicating that it was in action once again. (Either the frame I on which I was lying moved or else the machine made a noise, I forget which.)
Desperately, I tried to stop breathing, but my body was still in panic mode, sucking in air in huge heaving gulps. Eventually I brought my breathing under control, but I finished the CT scan not knowing whether I had or had not messed it up.
On Monday June 7th, one week after my first CT scan, I had a consultation with Dr. Lux at Kappatani Hospital.
There was some good news and some bad news.
The good news was that Dr. Lux did not say to me "You breathed at the wrong time and messed up your CT scan, you idiot", so presumably I had succeeded in holding my breath when I was supposed to.
The bad news? Well, Dr. Lux told me that my CT scan had revealed a lymph node ten millimeters in length in my abdomen near the aorta, possibly benign but possibly not. She had made an appointment with a Dr. Taisho, an internal medicine expert of some kind, who would organize some tests for me. The appointment was one week in the future.
My dominant emotion after hearing this news was dread, pure and simple. Dr. Lux had already suggested to me that I might have lymphoma. The enlarged lymph node itself suggested the possibility of lymphoma. My Aunt Joyce died of lymphoma. Died after a long and difficult struggle with lymphoma. It was difficult, therefore, to avoid the conclusion that I was going to die of lymphoma.
On Monday June 14th I had my first consultation with Dr. Taisho, the internal medicine specialist, at Kappatani Hospital. He showed me some images from my CT scan, and these images instructed me about the depth of my own ignorance.
As I looked at the images which Dr. Taisho was showing me, the thought that went through my mind was, "The problem is in my abdomen, idiot, so why are you showing me photographs of my brain?"
Fortunately I kept my mouth shut, because a few seconds later I realized that what I had taken to be the brain was in fact my abdomen. I don't go through life seeking out lessons in humility but sometimes they get handed out for free.
In halting but adequate English, Dr. Taisho pointed out a lymph node ten millimeters in size in my abdomen near the aorta. This was the lymph node that Dr. Lux had already told me about. Dr. Taisho also spoke of "many" very small lymph nodes in the same area, but said he couldn't tell if these were malignant or not.
Was the large lymph node malignant? Dr. Taisho couldn't tell. Why? Because the aorta and the lymph node were of the same density. Consequently, the lymph node did not stand out well on the CT scan. Dr. Taisho wanted to repeat the CT scan, this time having iodine injected into my body for greater contrast.
I said okay, and Dr. Taisho took me through an informed consent procedure, which involved him informing me that injections of iodine can result in severe side effects. In particular, some patients experience a sudden drop in blood pressure. A certain proportion of patients get headaches, and, additionally, it's standard to feel hot just after the iodine is injected into the body.
Having finished informing me, Dr. Taisho presented me with a Japanese-language informed consent form to sign. I ran my eye over it.
My Japanese-language skills are not strong, and reading is my weakest area, but I do know a certain number of the Chinese characters which are used to write Japanese, and one which I know very well is the character for "death", which is always turning up on TV, getting displayed on screen, for example, as part of news items about traffic fatalities.
As I scanned the informed consent document, the character for "death" leapt out at me, and I consequently read the couple of sentences in which they occurred, which were more or less within my ability.
I gathered that not only can iodine give you a headache but it can also kill you, a point which Dr. Taisho had chosen to pass over in silence. Admittedly, the risk of death is very small. Perhaps only one chance in ten thousand or one chance in twenty thousand. Even so, death is death.
I figured that I had to find out what this thing in my gut was. The process of finding out might (just possibly) kill me. But, on balance, choosing not to find out was probably far more dangerous.
And, being by that time a little more informed than Dr. Taisho thought, I signed the informed consent document.
The CT scan with iodine was scheduled for Monday June 28th and I got an appointment for Monday July 5th, at which point I would receive feedback from Dr. Taisho. And I was also given two appointments for a gallium count, a procedure involving two separate hospital visits.
I then went and had some blood tests (precisely what for, I have no idea, but I presume they were specialized tests looking for signs of cancer) and then I went home.
On Tuesday June 15th, I showed up at Kappatani Hospital to have gallium injected into my system.
As usual, on arrival I took my hospital ID card, a piece of plastic the size of a credit card, and inserted it into a machine about the size of an ATM machine. After a few moments, the card was ejected and the machine printed out a piece of paper telling me the time and place of today's appointment.
I found my way to the hospital's nuclear medicine department, which was down in the basement, and was told to wait. I waited in a small waiting room where most of the other armchairs were occupied by elderly people who seemed to be either resting peacefully or asleep.
What impressed me was the enormously relaxed atmosphere, the sense that time was endless, that we were in a pressure-free environment where there were no deadlines. This was completely different from the feeling I got from the rest of the hospital, where everyone typically seemed to be in a rush. Later, in Auckland, New Zealand, I was to find a similarly relaxed atmosphere in the waiting area in the oncology department. Unlike bubonic plague or Ebola fever, cancer is a disease which gives you plenty of time; even if you're dying, you can relax into it. The few people in the waiting area in the nuclear medicine department in Kapatani Hospital were so relaxed that some of them were almost asleep.
Eventually, I was asked to take off my street shoes, put on some hospital slippers and to follow someone into the interior, which was signposted with radiation hazard signs. A young woman produced a rather large syringe which looked to me as if it was made of glass and which was filled with a substance which I remember (rightly or wrongly) as being gray.
She slid the needle into a vein in my arm and began to push the syringe, injecting a radioactive isotope of gallium into my vein.
"It doesn't hurt?" she said, in Japanese.
"It doesn't hurt," I replied.
And it didn't hurt. Of all the people who have inflicted needles upon me at one time or another, she was far and away the slickest. Mainlining gallium was effortless. And she knew it. She knew she was good.
Afterwards, I asked, in Japanese, "Do I pay now?"
At Kappatani Hospital, the standard procedure was to take some documentation from the medical care providers and, at a counter in the big room where payments were made, to exchange that documentation for a ticket with a number, for example "808" or "809". The patient would then take a seat and watch as numbers scrolled across illuminated signs set above various cashiers' stations.
A voice on a public address system would call out each new set of numbers when they were ready to start scrolling. When your number was displayed, you would line up in front of the appropriate cashier's station, pay, and get a receipt. Printed on the receipt would be, in Japanese, details of your next appointment.
On this occasion, however, I was told that there was nothing to pay. The gallium count was a two-step procedure, first the injection of the radioactive isotope and then the taking of the photographs. I would pay next time, on my next hospital visit, after the photographs had been taken.
So advised, I exited the nuclear medicine department.
I felt totally calm throughout my entire visit to the nuclear medicine department. However, on exiting the department, I lost my way, and ended up in a dead end deep underground, baffled by the complexity of the tunnels. So I think I probably wasn't as calm as I thought I was.
Having managed to escape alive from the maze in the hospital basement, I went home, only to return on the Thursday, by which time the radioactive isotope which had been injected into my body had circulated right through my system. On the Thursday, I spent thirty minutes lying on a kind of stretcher while photographic negatives were used to take pictures of the radioactive interior of my breathing corpse, this in an attempt to detect any areas of inflammation or malignancy.
The whole procecdure involves, I think, roughly speaking, about as much radioactivity as one full-body X-ray. Not enough to make me into a radiation hazard as I wandered round Tokyo and Yokohama, though I assume I would have set off any super-sensitive radiation detector which happened to be operating if I had happened to show up at a terrorist-ready airport, which I didn't.
On Monday June 28 I returned to the hospital for another CT scan, this time with iodine dye. The radiography team put a drip in my right arm, injected the dye by means of the IV line, then exited the room containing the X-ray machine. I expected my entire body to flush with heat as the iodine went in. But it didn't. And I was disappointed. If I'm going to have a medical drama I'd like the whole thing, okay?
(The next year, in New Zealand, I again had an iodine injection in conjunction with a CT scan, and on that occasion I did indeed feel my body flush with heat as the iodine hit my system.)
I still hadn't (and still haven't) learnt the Japanese for "Okay, you can start breathing again" but I assume that the second thing which the machine said must be exactly that. So, the second time the machine's synthesized voice spoke to me, I resumed breathing.
I would have to wait until Monday July 5th for feedback, and, in the meantime, my head was filled with speculation.
What follows is my diary entry for the Friday, July 1st.
* * *
2004 July 01 Friday.
At this point, having done more Internet research, I'm leaning toward the notion that I probably have sarcoidosis [SAR-koy-DOH-sis], an inflammatory condition that I read about earlier. Usually it causes a dry cough, which I don't have. It also causes characteristic changes on an X-ray of the lungs, and I did have a chest X-ray earlier, which, as far as I know, was normal.
Why I think I may have sarcoidosis is because:-
(a) a gallium count is sometimes used as a diagnostic measure to demonstrated the presence of sarcoidosis;
(b) sarcoidosis can cause the development of lymph nodes;
(c) sarcoidosis can cause dryness of the mouth, and I've experienced a little of this;
(d) sarcoidosis can cause blurred vision;
(e) sarcoidosis can cause loss of weight.
The bad news is that this disease can kill you. (A one in fifty chance.)
The good news is that the patient may experience the spontaneous resolution of the problem within one or two years.
Treatment is with steroids.
Of course, it's possible I may have lymph cancer, in which case we're into a different ball game. The reasons why I don't think I have cancer are:-
(a) I don't want to have cancer; and
(b) I feel okay.
The bad news (continued) is that if I do have sarcoidosis then (to quote one web site) "ocular involvement may lead to blindness if untreated."
* * *
In July of 2004, then, I didn't know what was wrong with me, and I was still living in a world of comfortable options. In retrospect, one serious error that I made was to think that I would necessarily feel bad if in fact I had cancer.
What I've since learnt is that there are plenty of people (I've met some of these people and there are others whom I've read about or heard about) who have cancer but who have no suspicion of the fact because they generally feel good.
Anyway, the results came back negative. The gallium count showed no cancer, and, I guess, no sarcoidosis. As for the CT scan done with iodine, well, looking at the result, Dr. Taisho said that the lymph node still looked benign. Probably. But it should be rechecked in a year.
"But you won't be here in a year," he said happily.
I said that I would and so he got on his computer and tried to make me an appointment for a year out. But he couldn't, because the computer wouldn't let him go that far ahead, and he had to settle for one eleven months in the future.
So what now?