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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.

Part of

Picture showing result of visual field test.

        Friday, January 20, 2006

        To be histrionic, I could call the graphic above "the diagram of my death". What it is, in fact, is a crude representation of the result of the visual field test I had on 2006 January 19, the white showing the quadrants in which my eye saw and the black showing the quadrants in which I did not see.
        The outcome of the test is that in effect my life has been canceled, at least for the moment, and perhaps permanently. The brain cancer for which I was treated may quite possibly have come back, and I will be undergoing further tests to find out whether that is or is not the case.
        I am not a great believer in ritual. However, near the outset of my medical treatment early last year, I walked down to the edge of the sea and cupped some water in my hand and drank, drinking from the waters of the planetary ocean, from the whole of which I am a part.
        This evening, as a kind of way of dedicating myself to what is left of my life, be that long or short, I once again walked down to the edge of the sea, and, in defiance of any concept of medical responsibility, drank from the waters of the Waitemata Harbour.
        As I did so, I remembered drinking the water at Muktinath, a holy place high in the Nepal Himalaya, which I have visited twice, on each occasion crossing the high pass of Thorung La, up at about 5,400 meters.
        During my first confrontation with the possibility of my death, I thought over the life that I had lived through, and decided that, on balance, I was satisfied. And now, though I don't yet know exactly what I'm up against, or what the outcome will be, my feeling is much the same.
        My eye surgeon saw me on Wednesday 18 January, for what was supposed to be the last post-operative check following cataract surgery on both eyes (and, on the right eye, a vitrectomy — that is to say, a jelly-removal operation).
        Being disconcerted by a drop-off in the vision in my right eye, where my central vision has failed, he had me show up at the Greenlane Clinical Center today, and I underwent tests in the morning and saw the eye surgeon in the afternoon.
        I was told that one test involved injecting a dye so my eyes could be photographed, and so I imagined that I was going to have yet another injection into the eye itself. But, no, the injection (of some kind of vegetable dye, I'm told) was into a vein in the right eye.
        In this test, called fluorescein angiography, dye floods the eye within seconds of being injected into the vein, showing up all the details so photographs can be taken.
        While in the waiting room, before this test, the man sitting next to me saw the information pamphlet I was reading, and said that he, in his trade, had used fluorescein to detect leaks in pipes, using ultraviolet light to see any leaking fluorescein
        There were a lot of photographs, and they were hugely bright, and I wondered what the photographs would show.
        The photographer this time was a man, and very quietly spoken. Some months back, I had photos taken by a woman, chatty, very fair of skin.
        She was photographing the backs of my eyes, and told me that her retinas were pink, because she was fair-skinned. In my case, my retinas were red, a standard Caucasian color. She said that people with darker skin have retinas which are a ... I think I remember her saying "a greenish brown". And, on a computer screen, she showed me a damaged portion of one of my own eyes which was, if memory serves, a kind of greenish brown, mottled and discolored.
        So what did today's eye photographs reveal?
        Absolutely nothing.
        A lot of eye defects will show up with this kind of test, but the photographs of my eyes revealed nothing negative.
        What brought the bad news was the visual field test.
        In this test, you hold a button in your hand and look at a bright light in the center of a screen. Flashing lights go off here and there, and, every time you see a flash, you press the button. You do this first with one eye then with the other.
        While doing this test, I was conscious of the fact that I was failing this test, and failing badly. I was tired, and it was difficult to concentrate. Sometimes I saw a very clear orange flash, like a small exploding star, and sometimes I saw just the tiniest flash, and sometimes I saw something which might have been a flash or a hallucination or the static of interference from damaged nerves.
        Sometimes I pressed the button late, having been slow to recognize that there had been a flash, and sometimes I didn't press the button at all, even though there had been a flash, and sometimes I accidentally pressed the button at random intervals when there was no flash at all to be seen.
        But I figured that lots of people must have these kind of difficulties, and that presumably the test was engineered to accommodate human failure.
        And so it was.
        Though I experienced the test as chaotic and confusing, failure inflicting itself upon me, the results were extremely clear.
        In the afternoon, my eye surgeon showed me the computer-generated results of my button pushing, and my erratic response to the test had generated two very clear images, one of what I could see in my left eye and one of what I could see in my right.
        Where I could see flashing light, there was whiteness, and where I could not there was blackness. In both eyes, the blackness was in the upper right quadrant. I was effectively blind in the upper right quadrant of each eye, though I was not aware of this. And, in the right eye, the blindness was encroaching on the central area of my vision, something that I was very much aware of.
        (Currently, if I hold out my right arm directly in front of me, thumb raised, I cannot see my thumb. The central portion of my visual field is just a blur.)
        The long medical name for this condition is upper quadrant anopia.
        (One of the great things about having brain cancer is that it's the vocabulary-building opportunity of a lifetime, although I'll freely admit that I haven't optimized my use of this opportunity. The other great thing is that you get to eat hospital food, lots of it, which makes you appreciate the good things in life all the more when you finally escape from incarceration.)
        I was really impressed by what a crystal-clear result came out of what had been, subjectively, a chaotic and entirely unsatisfactory test. Plainly, the technology works. Congratulations to those who engineered it.
        My eye surgeon told me my eyes had recovered well from surgery and there was no evidence of any damage in the eyes. Furthermore, the fact that the field defect was pretty much exactly the same suggested a common cause.
        He told me maybe my brain cancer had been reactivated.
        The nerves from both eyes run through a common channel as they head in the direction of the brain, and some kind of tumor or something could be pressing on the nerves.
        "The good point about this," he said, giving me the happy news, "is that if it is a recurrence of the lymphoma then it's treatable and the symptoms should be reversed."
        That's not verbatim, but that's approximately what he said. The bad news, which we didn't go into, but which I'd clarified with my radiation oncologist on an earlier occasion, is that if the lymphoma comes back then it is generally not possible to achieve a second remission.
        That said, I think back to a day in hospital, in the hematology ward, which was where I ended up receiving my chemotherapy. A woman was visiting a patient who had cancer, and she told him of her story. She had cancer. She achieved remission. The cancer came back. She achieved a second remission. She was there to tell him it was doable.
        There's a saying: give me a why and I can endure any how.
        During my long siege of medical treatment last year, I realized that I had enjoyed a good life, and that I was satisfied by the life I had led. But I also realized that I had things to live for. And, at this stage, I do not know what lies ahead. But what I do know is that if it is possible for me to live, then I will endure what is necessary to achieve that end.

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