He spoke, too, of how, in a few weeks, it might be a good idea to laser the retina and kill any malignant cells that might have survived the radiation. But my tumor is almost on top of the fovea, and if the fovea is destroyed, I will lose all central vision. He wondered about a compromise: lasering the two-thirds of the tumor farthest from the fovea, but keeping well clear of the fovea itself. He mentioned some newer treatments as well: injections of a substance into the eye that may prevent the growth of blood vessels within the tumor and thus starve it of blood; and a new anti-melanoma vaccine, still experimental. But for the moment, this is all in the future, hypothetical; he hopes radiation and lasering will do the trick.
In the meantime, I still have another thirty-six hours until Thursday afternoon, when I will go into surgery again to have the radioactive plaque removed.
JANUARY 11, 2006
My good friend Kevin came by at 6:15 this morning, a startling but very welcome apparition, with his huge, bushy eyebrows. He had been making early rounds on his patients and was still in his white coat. “Look!” he said, pointing to the window, and I looked—and saw a most delicate, rosy dawn transfusing the night sky and then a smoky, almost Krakatoa-like sunrise over the East River.
My scotoma itself is not so much like a blind spot as like a window, through which I see strange buildings, figures moving, little scenes playing themselves before me. At other times, I see writing, jumbled letters that I cannot read—hieroglyphs or runes—all over the scotoma. Once I saw an immense circular segment with numbers on it, like part of a clock or an Aztec calendar. I have no power to influence any of these visions; they proceed autonomously and have no connection that I can discern with what I am thinking or feeling. The sparkles, the visual storms, may come from my retina, but these visions, surely, must come from a higher level, must be constructed by my brain, calling, if indirectly, on its stock of images.
If I have been looking at something and then close my eyes, I continue to see it so clearly that I wonder whether I have actually closed my eyes. A startling example of this happened a few minutes ago when I was in the bathroom. I had washed my hands, was staring at the washbasin, and then, for some reason, closed my left eye. I still saw the washbasin, large as life. I went back into my room, thinking that the dressing over the right eye must be absolutely transparent! This was my first thought and, as I realized a moment later, an absurd one. The dressing was anything but transparent—it was a great wodge of plastic, metal, and gauze half an inch thick. And my eye, beneath it, still had one of its muscles detached and was in no position to see anything. For the fifteen seconds or so that I had kept my good eye closed, I could not have been seeing anything at all. Yet I did see the washbasin—clear, bright, and real as could be. For some reason, the image on my retina, or in my brain, was not being erased in the normal way. And it was not a mere afterimage. Afterimages, for me at least, are brief and meager in the extreme—if I look at a lamp, I may see the glowing filament for a second or so—whereas this image was as detailed as reality itself. I continued to see the washbasin, the commode next to it, the mirror above it, the entire scene for a good fifteen seconds—a genuine persistence of vision. Something very odd was going on in my brain. I had never experienced such a phenomenon before. Was this—like my involuntary images, my hallucinations of patterns, of people—simply a consequence of being blindfolded in one eye? Or was it the angry, half-destroyed, cancered retina, now in a blaze of radiation from the radioiodine, sending strange wild signals to my brain?
JANUARY 12, 2006
8 A.M.: This afternoon, after precisely seventy-six hours, the radioactive implant will be removed, the disconnected eye muscle reconnected; and if all goes as it should, I will be released from the hospital tomorrow.
6 P.M.: I thought this surgery would be as sweet and painless as the first one, but when the anesthesia wore off I had the worst pain I have ever known—it made me gasp. I can avoid it only by keeping the eye completely still; the slightest movement seems to tear at the just reconnected eye muscle.
7 P.M.: Dr. Abramson came in to check my eye. He took off the patch; everything was very blurry, but this, he said, would clear in a day or so. He gave me careful instructions about putting drops in the eye several times a day, said I should not worry if I had transient double vision, and that I should feel free to call him, day or night, if I felt anything untoward was happening.
There is an unpleasant feeling of stickiness, crustiness, in the eye, perhaps from all the eyedrops. I have to fight against the impulse to rub it.
MIDNIGHT: Finally, the pain is beginning to be tolerable. Over the past six hours I have had huge doses of Percocet and Dilaudid. Nothing seemed to touch the pain, until, an hour ago, Dr. Abramson ordered a whopping dose of Tylenol. Oddly, this did the trick, when the opiates had failed to help.
JANUARY 13, 2006
I came home this morning. Patients are usually glad to get out of the hospital, but I was rather sorry to leave. In the hospital, I was surrounded by attentive people, catering to every need; I was visited constantly, pampered. And now all this has gone, and I am back in my apartment, alone. I can’t go out—there has been a heavy snowfall, the streets are icy—and I dare not go for a walk with, in effect, only one eye at the moment.
JANUARY 15, 2006
7 A.M.: There was a snowstorm, a howling gale, in the night, but it looks pretty, what I can see of it now. Mornings are worst. I wake to a small, dim, bleary window of vision in my right eye, with streaks and blotches moving across it and gross distortion of horizontals and verticals, as one might get with a fish-eye lens.
10 A.M.: It has been almost a week since the surgery, and tired of staying inside, I ventured out, despite the snow, on a friend’s arm. It is extremely cold, icy, windy outside. The wheels of cars spin helplessly, and we saw one car, parked on ice, actually blown forward an inch or two by a sudden, gale-force gust.
Everything in the right eye is swimmy, not only metaphorically but literally so—I am looking through a shifting film of fluid. The shapes of everything are fluid, moving, distorted. I imagine my retina almost afloat in the fluid pooling beneath it, changing shape like a jellyfish, or maybe a waterbed.
Looking through a window at a tall rectangular building across the street, I see it, as in a fun house, with its top or its middle (depending on where I fixate) splayed out and bulbous. This happens with all verticals; horizontals tend to be squashed together. In the bathroom mirror, the upper part of my reflection is distorted—my head looks grotesquely flattened.
I am told that these effects come from edema beneath the retina and will resolve in a few days. I cannot always believe this; I feel that something approaching blindness in my right eye has descended on me far faster than I (or anyone else) would have predicted. Along with this is the suspicion that there was a fatal delay between diagnosis and treatment. That in those three weeks, additional and irreversible damage was done, as vision declined from a smallish blind spot to a virtual obliteration of the whole upper hemisphere of vision. I cannot help feeling that the melanoma should have been treated as an emergency and radiated without delay. I am sure I am being irrational, I hope I am wrong on these matters—but they form a nucleus of distrust and suspicion, which can get blown up into a tornado of paranoia.
JANUARY 16, 2006
Have just written to Simon Winchester, telling him how much pleasure I have got from listening to the audiotape of his book Outposts.
I live in a world of words, and I need to read; much of my life is reading. This is not easy now, with my right eye being “out” for the moment, and the left eye with long-standing problems of its own. I was punched in the left eye as a boy, which produced a cataract, and its vision has been below par ever since. This didn’t matter when my dominant right eye had 20/20 vision, but now it does. My regular reading glasses are not strong enough for my left eye; I have to use a magnifying glass, which makes reading much slower and prevents me from scanning whole pages at a time.
Wandered out with Kate to the bookstore to get some large-print books—dismayed to find that almost all their large-print books are how-to books or romance novels. I could hardly find a single decent book in the entire large-print section. It is as though the visually impaired are also regarded as intellectually impaired. I feel like writing a furious op-ed about this for the Times. Audiobooks have a larger range, but I have been a reader all my life, and am not fond of being read to, on the whole. The Simon Winchester was a pleasant exception to the rule.
JANUARY 17, 2006
Dr. Abramson cautioned me that while the retina is still swimming in edema, I may see clearly one day and be almost blind the next, but I still overreact to these fluctuations—exulting at the good times, despairing at the bad. “I librate between a glum and a frolic,” as W. H. Auden put it in his poem “Talking to Myself.”
I miss swimming terribly—the swimming pool is where I feel best, think best, and I need it every day. But I am not allowed to swim for two weeks following the surgery. Dr. Abramson knows well what a deprivation this is for me; he is a passionate swimmer, too—the walls of his office display various medals he has won. He might have been a professional athlete if he had not chosen medicine.
Not wanting to bother Dr. Abramson (though he said I should feel free to call him), I phoned Bob this morning to ask if he would check my eye. He came along with his ophthalmoscope, dilated the pupil, had a long, careful look, and then drew me a picture of what he saw: the melanoma like a black mountain in the middle of my retina; one side so steep, he said, it looked like “a cliff.” He saw no signs of hemorrhage or anything amiss. But the blinding light of his ophthalmoscope caused me to lose all central vision in the eye for several hours. Whatever I looked at with my right eye disappeared—the center of my clock disappeared, leaving a halo of peripheral vision around it (I dubbed this, in my mind, “bagel vision”). It gave me a sense of horror. If this were permanent and if it affected both eyes, it would be terribly incapacitating—is this what people with macular degeneration have to live with?1
JANUARY 18, 2006
NOON: The eye was still quite blurred and dilated at nine o’clock this morning, but in the past three hours this has diminished, and the 12 and 1 are starting to be visible again when I fixate on the center of the clock.
But something has happened to the perception of color in the eye. When I went for a stroll this morning, a bright green tennis ball lying in the gutter lost all its color when I looked at it with just my right eye. Similarly with a Granny Smith apple and a banana—both turned a horrid gray. Holding the apple at arm’s length, I find the central gray-out surrounded by a normal green, as if color vision is preserved around my fovea but not in it. Blues, greens, mauves, and yellows all seem to be attenuated or lost; bright reds and oranges are the least affected, so when I pick an orange from my fruit bowl to test myself with, its color looks almost normal.
JANUARY 25, 2006
Today and yesterday, the twelfth and thirteenth days after the end of the radiation treatment, I observed, for the first time in a week, definite signs of improvement. Apples are starting to regain their greenness, and acuity too has improved. Last night I was able to read normal-sized print (Luria’s autobiography) for half an hour before I went to sleep. I had not been able to read myself to sleep, my usual custom, for most of the month, since going into the hospital.
But strange dreams, sometimes nightmares, continue. In one, two nights ago, people were being tortured, blinded, by having red-hot needles thrust into their eyes. When it was my turn I struggled, let out a feeble cry, and tore myself into wakefulness. Yesterday I was awakened (or perhaps I was only half asleep) by lightning. I was surprised—no storms had been predicted—and waited for the thunder. No thunder. The sky was clear. I then realized that this had probably been a flash from my damaged and abnormally active retina. I had had scintillations before, and coruscation, but never a fulguration of this sort.
This morning I dreamt of a grove of tea trees, which, I understood, exerted a powerful protection against cancer if one lived beneath them.
JANUARY 26, 2006
It is only 8 a.m., and there are already nine people here in Dr. Abramson’s waiting room. Do they, do we, all have ocular melanoma? There are no children today, but there are several youngish adults, of both sexes, though ocular melanoma is commoner after the age of sixty. Was I carrying an ocular melanoma gene at forty, or twenty? Or was it a mutation, one of the many, ever increasing on our polluted, carcinogenic planet?
I tell Dr. Abramson about the temporary loss of central vision in the right eye following the blinding light of Bob’s ophthalmoscopy and the color changes I had noticed since. All this, he says, while perhaps exacerbated by the surgery, the radiation, the blinding light, is probably temporary and should disappear. Upon examination he sees a bit of necrosis and calcification of the tumor—the expected result of radiation. His impression: we are “on course,” but I will probably need “touch-up” lasering in a month or so. I don’t need to limit my activity anymore; I am free to swim. Hoorah!
7 P.M.: Despite everything, it has not been a wholly unproductive week. Kate has typed (and enlarged) two of my music chapters for me to go over, and I have seen several people with synesthesia this week, all fascinating in their different ways. Perhaps, in spite of my difficulties reading and my obsession with testing visual fields, color changes, etc., I can still hope to complete my music book.
For the next few weeks, I continued to experience fluctuations, with the right eye almost blind on some days and better on others, with “fish-eye” distortions and great sensitivity to light. I had to wear large, all-enveloping sunglasses outside and avoid dazzling sun or flashbulbs, which could blind me in that eye for hours. I wore a patch on the eye for much of the time, so that the normal image from my good, left eye would not have to compete with the distortions from the right eye. In March, Dr. Abramson followed up my radiation treatment with some lasering, and a couple of weeks later, the edema finally started to subside. With this, the vision in my right eye started to stabilize, the distortions and light sensitivity gradually disappearing.
Abnormalities in color perception, however, remained, although (unlike the distortions) these were not apparent if I used both eyes. If I closed my good eye, I suddenly found myself in a different chromatic world. A field of yellow dandelions would suddenly become a field of white dandelions, while darker flowers would turn black. A bright green fern, a selaginella, turned a deep indigo when I scrutinized it through a lens with my right eye. (My right eye was always the dominant one, and I would automatically hold a lens or monocular to that eye, even though it was now so much worse than the left.)
There were also curious suffusions or diffusions of color. When, for example, I looked with my right eye at a pale mauve flower surrounded by green leaves, the green surround took over and filled in, so that the whole flower appeared green. When I looked at a meadow of bluebells and closed my left eye, the bluebells turned green, no longer distinct from the vegetation around them. It was like a conjuring trick—now you see it, now you don’t—and quite extraordinary to perceive such different worlds with each eye.
When I saw Dr. Abramson in May, he said that the edema had entirely gone and the tumor had started to shrink, and that with luck, I might hope to enjoy good and stable vision for years to come.
All continued well over the next two months, and I made fewer and fewer entries in the heavy black notebooks marked “Melanoma Journal.” I did not resume detailed notes for almost a year. But starting in July 2006, there was a gradual return of visual problems—especially distortion, diminished acuity, and sensitivity to light—and some regrowth of one area of the tumor.
Dr. Abramson used the gentler word “persistence” to describe this and thought that another, milder lasering would take care of it. But when I had the procedure in December, it did not help. It began to look as if that narrow strip of retina next to the fovea, which he
had carefully avoided lasering in order to maintain some central vision, would have to be sacrificed after all.
By April 2007, distortions had become extreme in the right eye, and this affected my vision even with both eyes open. People turned into bizarre, elongated, El Greco–like figures, tilted to the left—they made me think of the insectlike Selenites pictured in my edition of H. G. Wells’s The First Men in the Moon. And the sort of visual spread which had started a year before, at first confined to colors, now affected everything I looked at. Faces, in particular, would develop translucent, puffy, almost protoplasmic protuberances, like a Francis Bacon portrait.
I found myself involuntarily closing my right eye more and more. Its acuity, by May of 2007, had plummeted to 20/600—I couldn’t read the largest letter on the screen. Up to this point I had thought of losing central vision as a disaster, but now my sight was becoming so poor and so distorted that I began to wonder whether I would do better with no central vision in the right eye at all. Increasingly, it seemed, there was less and less to lose—so we scheduled a third lasering, which would finally knock out the rest of the tumor and, perhaps, the remaining central vision in that eye.
JUNE 2007
The lasering, a couple of weeks later, took about an hour, involving dozens of minute cauterizations, and I left the hospital with a heavy dressing over the eye, to protect it until the anesthesia wore off. Around 9 p.m. that night, I removed the dressing, not knowing what I would see, or not see.