One of a suite of blog entries about the aftermath of chemotherapy and radiation therapy, including brain damage and eyesight damage; a survivor's account of the aftermath of cns lymphoma, non-Hodgkin's lymphoma of the large B-cell variety, in the author's case cancer of the brain and the spinal cord.
THIS IS A PICTURE OF YOUR GOD:
A HUGH COOK READER.
Friday 19 May 2006
Brain damage I was warned about. I should expect, quite possibly, short term memory loss. If so, then I would have to live with it.
This I can cope with.
When seeking directions in Tokyo's crowded Shibuya district, I was asking for the music store HMV but ended up asking where I could find HIV. No problem. The store is a major landmark, and the guy I was talking to figured out my meaning.
Recently, when renewing my card at the local library, I was convinced that the librarian had retained my car. It turned out, however, to be in my wallet.
This kind of minor glitch is not disabling. If that's the price, then, okay, I was warned.
But the blindness which has come upon me, this, the heartbreaking tragedy which has shattered my life, of this I had no warning. And I believe that I inquired specifically into this danger, and that I was denied the knowledge that, by rights, I should have been given.
If there is a hell, then I most sincerely hope that my radiation oncologists end up burning in it.
Meantime, the reality is that I am partly blind and quite possibly heading in the direction of being totally blind. It is possible that I am already legally blind.
Which brings us to today's question: what does legally blind mean?
A reader sent an angry letter to a New Zealand newspaper denouncing a customer who had been seen in a supermarket with a dog. The dog was a guide dog, but the woman was plainly not blind, since she was peering at groceries on the shelves.
Someone wrote in to explain that people who are visually disabled may fit into a "legally blind" category which does not necessarily mean being stone blind. The woman seen in the supermarket might quite possibly have been able to see the groceries at close range, yet need the guide dog for survival on the busy streets.
The situation is, I believe, similar in America, New Zealand and Japan. People who are visually disabled may fit into a "legally blind" category if they satisfy one of two requirements:
(a) They can only read very large print; or
(b) Their visual field has failed to a stated extent.
I do not know whether I, personally, fit into the Japanese category of "legally blind", as the eye specialist who will interpret the result of my recent visual field test has not yet delivered his analysis.
But, regardless of the technicalities, it is possible that my eyesight will deteriorate, in the left eye, to a state of near-total blindness, just as it has in the right eye.
This uncertainty is, to put it mildly, disconcerting.
I was grateful to receive an encouraging comment from a reader, Melvin, who wrote, in part:
"I hope that life still has more than enough things to enjoy and experience, and unfinished business to pursue, that it never becomes tiresome."
In that spirit, my intention is to push ahead with further projects, to the extent to which that is practical, the latest being a new edition of my science fiction book THE SHIFT, out of print since 1986.
For practical purposes, I have two problems:
1. Things I see which do not really exist, and
2. Things which do exist but which I fail to see.
The latest sumo tournament is in full swing and, while watching TV, I saw a very formal ceremony in which, to my eyes, one of the sumo wrestlers appeared to be wearing a black bra. I knew that this was impossible so dismissed the vision.
On the other hand, there was the incident of the draining board.
It is made of two pieces of plastic, and water drains through into the lower compartment, so it is my habit to pick it up and empty out the water.
Recently I did this and a drinking glass, which was invisible to me, went crashing into the sink and smashed.
The next day, I looked very carefully and, before reaching for the draining board, checked to make sure it was empty. There was nothing there.
Then I swept my hand through the "empty" space and found, perched on the edge of the draining board, a while plastic bread board sitting (invisibly, as far as I was concerned) against the white paint of the kitchen wall.
In the brightness of the day, I need sunglasses. That's no problem. In a dimly-lit room, however, I am blind.
The day I recently went to a noodle restaurant with my wife, I opted to sit outside rather than inside because I could not see in the murky gloom of the interior.
Even outside in the bright sunshine I could not see properly, and confidently poured soy sauce onto the surface of the table when I thought I was adding it to a small dish of condiments.
Still, at this stage I can still work reasonably effectively using my computer, as the easiest thing for me to see is black print on an illuminated screen.
I am, then, not totally blind, not at this stage, though, subjectively, it seems to me that my remaining eyesight is deteriorating at an alarming rate.
And am I legally blind by Japanese standards?
Well, a local eye specialist's analysis of my recent visual field test will supply an answer to that.
Earlier, back in January, I wrote about a visual field test that I had done on both eyes in Auckland, New Zealand.
At that time, the result indicated a loss of vision in the upper right hand quadrant of each eye and, additionally, some loss of the central vision in the right eye. My ophthalmologist agreed with the notion that this eye damage was caused, in all probability, by the radiation therapy I was subjected to back in 2004.
This time, no test was done on the right eye because the right eye is now blind and useless.
The latest visual field test shows the white area as being those in which I see and the dark areas as being those that I do not see.
The test was the same in Japan as in New Zealand, but for two points.
For a visual field test, you stare at a fixed point on a screen, without chasing any flashing lights you might see, and you click a button every time you see a flashing white light.
A computer generates an image showing the result, as pictured above.
The first difference was that, in Japan, before the test began, they displayed, on the screen, four orange lights, which made a diamond pattern on the screen. They told me to watch for a flashing white light in the center of the diamond, which I did.
In other words, the first significant difference was that you got to see the flashing white light before you started looking for it. You were shown an example of exactly what you were looking for.
The second difference was that they told me about how long it would take -- ten minutes or so. The first time, I was given no guidance on timing, and, subjectively, I thought the test was about half an hour ago.
Additionally, when I did the visual field test in New Zealand, another person was already hard at work in the same room doing such a test, and so the person supervising the test was reluctant to answer my questions.
That said, the test was essentially the same.
I noticed that some of the flashing lights were much brighter than others, which I assume is because part of the eye was more damaged than other parts.
Before undergoing radiation therapy in New Zealand, I asked my radiation oncologists about the possibility of eye damage, and was told that I could expect the development of cataracts in a few years, because radiation grazing the backs of the lenses would cause the development of cataracts.
Cataracts, however, are not a big deal, as they can be surgically managed, and I received cataract surgery on both eyes last year, in 2005. The surgery was successful and, in the wake of that success, nothing prepared me for the disaster which was coming.
If I had been told that the radiation would result in blindness then I would not have opted for the radiation. I would, rather, have taken my chance.
I asked my radiation oncologists about this particular point, the risk of damage to the eyes, and I was not adequately informed.
As far as I am concerned, I was lied to. My life was destroyed by a decision made by doctors who did not adequately inform me about a point on which I raised the specific issue.
Burn in hell, you bastards.
* * *
The Japanese pharmacist who filled my prescription for ophthalmic steroids, the keyword in his question being "butsu", to beat or to strike. I answered, in Japanese, very simply:
I came away from the pharmacy with two small bottles, these to be used on the right eye, one drop four times a day until both bottles are finished. The Japanese ophthalmologist who prescribed these drops will review my condition in three months, in September, at which time I will undergo yet another visual field test.
The Japanese ophthalmologist, who works at the hospital which I now attend in Yokohama, and who I will call Dr Kanto, took a look at my eyes on Tuesday 6 June 2006.
When questioned, he was unable to say whether the radiation therapy which I underwent last year was or was not the cause of the deterioration in my eyesight. Certainly some people do suffer eyesight damage from radiotherapy. But he could not say what, exactly, had caused my present problems. It was quite simply impossible to tell.
That said, Dr Kanto told me that, in his view, the deterioration in my eyes was not "active". To make this statement, he used the English word "active"; he occasionally seeded his Japanese with a word or two of English.
The prognosis that he gave me was that I could expect that the condition of my eyes would remain stable, and that I should not expect to experience any further deterioration.
This was not a hard-and-fast promise to be relied upon as a picture of my future, but, rather, his take on the present situation. He does think that I should continue to be monitored and aims to see me every three months or so.
It was, he said, within the bounds of possibility that, in the long event of time, I might see some improvement in both eyes. But, when damaged eyes do recover, they do so with agonising slowness.
For the left eye, he had no treatment to offer. He showed me enlarged photos displayed on a computer screen and pointed out the patches that were clearly damaged. But he had some good news. The macula, the critically important light-sensitive portion of the left eye, was intact.
For the right eye, through which I see almost nothing whatsoever, he proposed laser treatment to punch a small hole in the eye, which, in some way, will help drain the eye. He predicted that the right eye would at least become brighter and that, possibly perhaps, I might experience some small improvement in my visual acuity in the right eye.
Whatever the result, I would see the result the following day. He characterised the treatment as risk-free and gave an assurance that it was entirely affordable.
Affordable? Yes. I went ahead and had the laser treatment, and, when I paid, my bill for my day at the hospital, a day on which I arrived at about 0830 and ended up leaving at about 1630, came to 5690 yen. That included the laser surgery. Computing this in American dollars at the approximate figure of 110 yen to the dollar, this works out at about US $52.
That was the cost to me under the terms of the Japanese national health insurance scheme, under which I, as the patient, pay only 30%, with the state footing the bill for the remaining 70%.
I was invited to take my time and think about the laser surgery, but, to me, it was a no brainer. Let's give it a shot.
The eye clinic was stacked up with waiting patients, so I left the hospital and went and had lunch, returning to keep a 2 pm appointment for the eye surgery. Naturally, the appointment did not run to time, so I sat around waiting.
Eventually, I was called to the laser treatment room.
A contact lens was placed in my right eye. This was unexpected and was considerably uncomfortable. I sat for what seemed like a very long time staring into the lens of a machine which made intermittent sharp brittle clicks, like the sound of a needle punching into something.
While Dr Kanto worked at the controls of the eye laser machine, a nurse held my face in position with both hands, so I would not move.
Finally, it was done.
"Umaku dekimashita," said Dr Kanto, which I think means "Well done".
Five minutes after the laser surgery, five minutes by the clock, Dr Kanto was looking eagerly into my right eye. Then he had his assistant had me do another eye chart test. But there was no sudden miraculous improvement, though I got the impression that Dr Kanto and his assistant had expected that perhaps there might be.
At that time, apart from anything else, my right eye was massively dilated by eyedrops in preparation for the laser surgery, so sharpness of vision could not be expected. In fact, as previously, in the center of my visual field all I saw was a smudged pool of darkness.
Picking up on the obvious anticipation of the doctor and his assistant, I was reminded, irresistibly, of the impatience of my two-year-old daughter, who must never be offered anything (icecream, or an orange, or whatever) unless it is immediately available, because she wants it right now.
And the desire, the anticipation, is understandable, because if they had rectified my eye by the simple procedure of punching a hole in it, then this would have been a miracle. But, as it was, I was still in the mundane world, the world of survival rather than cure, the world of, at best, incremental improvements.
Finally, having paid, I exited the hospital, feeling totally exhausted, as if at the end of a long and punishing siege of my body and soul.
But I walked out of the hospital with a future ahead of me, which was more than I had arrived with, since I had spent the previous weeks very much with the feeling that I was wrapping up my life, and that my life, as I had known it, was more or less over.
In the morning, in the dimness before dawn, I could see, mistily, the house, with my right eye. But this I could do before the laser surgery. The brightness of the sun, the brightness of daylight, totally washes out the field of vision in the right eye, but, in a twilight which is close to darkness but which is not darkness, I can see, vaguely, shapes: a doorway, for example, or a window on the stairway.
At 0551 I closed my left eye and looked at the world through the right. I could read nothing on my computer screen, but I could make out the rectangle of the illuminated screen, which appeared to be muddy gray, its grayness always in motion as patterns of meaningless interference played across the view.
Through the left eye, I could see the alarm clock sitting on the desk, and, next to it, a bowl containing two pairs of scissors and a bunch of pens. Through the right eye, I could see neither of these objects.
But, in my mind's eye, I could see the future I would make for myself, in the survival space which Dr Kanto had offered me. After long weeks of progressive hopelessness, he had offered me both treatment and a workable prognosis, a prognosis which I could live with, a future in which I could survive.
And, perhaps, prosper.