Back in my apartment that evening, testing my right eye, I was startled to see that the horizontal bars on the air conditioner all seemed to be warped, converging and collapsing into one another, while the vertical bars diverged. I cannot now remember how I spent the rest of the weekend. I was very restless, I went for long walks, and when I was inside, I paced to and fro. The nights were especially bad—I had to knock myself out with sleeping pills.
DECEMBER 19, 2005: DIAGNOSIS
I was able to see Dr. Abramson first thing on Monday. Kate—she is my close friend, as well as my assistant—came with me, for moral support. Dr. Abramson was a quiet man, sober, measured, reserved, with a mischievous glint in his eye. “Nice to meet you,” I said.
“We have met before,” he answered, and reminded me that he had been one of my students, back in the 1960s. He had vivid memories of my teaching and some of my idiosyncrasies. He recalled that my class had been the only one in his medical school career to conclude each week with a general discussion over a cup of tea. How odd, I thought (as perhaps he did), that more than thirty-five years after being his mentor, I was now his patient.
He made a preliminary examination of my eyes, then put some drops in to dilate the pupils. This was followed by photography and an ultrasound examination of the retina. Little was said during these exams. Then we sat down in another, bigger room. Dr. Abramson brought out a large model of the eye, cut open to reveal its inner anatomy. Taking a hideous-looking black object—irregular, convoluted, like a little black cauliflower or cabbage—he placed it near the entry of the optic nerve. The meaning of this was clear: I had a tumor, a malignant one. I thought of how, in England, the judge dons a black cap before pronouncing a death sentence. The black cabbage had the same meaning. I felt that I had been given a death sentence.
“It’s a melanoma,” he confirmed, but immediately went on to say that ocular melanomas rarely metastasized—there was little chance of any spread beyond the eye. Nevertheless, one could not allow it to persist and grow, untreated, in the eye. Until fairly recently, the recommended procedure was removing the entire eye (he himself had done a thousand such enucleations over the years) but now, it was felt, radiation could be just as effective, allowing one to keep the eye and its remaining vision. Dr. Abramson had barely got this out before I asked how soon this radiation could be done: tomorrow? He said there would be a three-week delay—the Christmas and New Year’s holidays were coming up—but there would be no significant growth of the tumor in this time, he reassured me; these things tended to be very slow-growing. It would take some time to fashion the radioactive plaque itself, tailoring it to focus the radiation precisely on the tumor. Then the plaque would be attached to the side of my eye, which would require disconnecting one of the eye muscles. In a second operation a few days later, the plaque would be removed and the muscle reconnected.
My tumor must have taken some time to reach this size, he added—had I observed any defect in my visual field in the months before? Alas, I had never checked it. I had noticed nothing amiss until two days before, in the cinema, and then the odd visual distortions, the warping of horizontals and verticals, over the weekend. This was due to the swelling and distortion of the retina, Dr. Abramson said, and it would disappear as the tumor, and the edema associated with it, yielded to treatment. But if the distortions grew worse, he suggested, I might consider wearing an eye patch for a few weeks until they subsided.
Ocular melanomas were virtually all sensitive to radiation, he continued. There was a very good chance that the tumor could be killed by the radiation, followed, if need be, by lasering. Unfortunately, my tumor was in a bad location—scarcely more than a hundred cells, a single millimeter, from the fovea, the part of the retina that one fixates with, where visual acuity is greatest. But if the tumor could be stopped in its tracks, he said, I would retain, for a while, the 20/20 vision I had always enjoyed in this eye. Later there might be some loss of vision, due to the belated effects of the radiation. Still, I should have a substantial “window”—perhaps years—of good vision before this occurred.
I said to Dr. Abramson, “I guess you have to give news like this to many patients.” I asked how I had seemed to take the news. Very calmly, he said, but it would need some digesting.
DECEMBER 19, 2005
I wake from a nightmare. The moment I open my right eye, I perceive something is wrong. The Darkness has inched forward—I can hardly see anything now to the left. I am calm and rational on the surface; I know that, with David Abramson, I am in the best possible hands, but I feel a terrified child, a child screaming for help, inside me.
DECEMBER 21, 2005
Having cancer, any cancer, means an instant change in status, in one’s life. The diagnosis is a threshold beyond which lies a lifetime, however long, of tests, treatments, vigilance—and always, whether conscious or unconscious, a sense of reservation about the future. Today, the first day of winter, liver function tests are to be done. Has the beast spread to my liver? Does it have its claws in my vitals? Will I die of melanoma? The thought is in my mind all the while.
I have made a bargain with the tumor: you can have the eye, if you insist, so long as you leave the rest of me alone.
At Memorial Sloan-Kettering there is a special sidewalk marked “Reserved for Patients Going to MSK.” I had occasionally noticed it when I visited people at the hospital. “Poor buggers,” I would think as I saw people take it. Now it is the path I take myself.
Blood is drawn—will it be normal? Routine exam: pulse, blood pressure, etc. My blood pressure is up a bit, 150/80—it is normally under 120/70. The elevator to the X-ray suite seems to have a strange, trapezoidal shape, its walls converging inward to the back. Is this part of the funhouse world, the world of metrical and topological distortion, that I will have to traverse? Kate assures me that this time, at least, it is not my eyes. The elevator indeed has a trapezoidal shape.
After a round of tests and paperwork at the hospital, I go back to Dr. Abramson’s office, a few blocks away. I am beginning to know the place and his staff, and they, now, are beginning to know me. I have joined a new club—the Ocular Melanoma Club of Greater New York (just as I belong to the Mineralogical Club of New York … and the New York Stereoscopic Society, of which I may soon become the only monocular member).
“December twenty-first, the first day of winter,” I say to Kate.
“An auspicious day,” she replies, trying to cheer me up. “The days start getting longer.”
“Yours, perhaps,” I remark darkly.
DECEMBER 22, 2005
4 A.M.: Woke. Cold. The fear. I open my right eye. The Darkness has grown again, is coming to encircle my little island of vision, my fixation point, my fovea. Soon it will be engulfed entirely.
10 A.M.: Vision much better. I think my 4 a.m. observation was related to the semidarkness of my bedroom and the fact that (as I am learning) the blind area, the scotoma, varies with the illumination—it can get larger and even knock out central vision if the light is dim.
When I close my right eye, I again see brilliant lights, the blinding lights that herald blindness. A scalloped crescent, with a Technicolor edge, just above my fixation point.
DECEMBER 23, 2005
I find that if I use just my right eye, I cannot read—the lines are indistinct, slippery, grossly distorted; they waver from moment to moment. I had not realized that this would be upon me so soon. Perhaps I have avoided reading these last few days, or done it wholly with my left eye, without realizing it. I am tending to close my right eye when I read—this is unconscious, involuntary, almost automatic.
DECEMBER 24, 2005
Waking after a good night’s sleep, and with the morning sun pouring in through my windows, I forgot for a moment that I am now a “cancer victim.” I felt well, and the visual symptoms were not intrusive. Feeling well is always a bit dangerous for me—it tempts me to excess. This morning at the pool, I swam for too long: an hour, mostly backstroke, but then
several lengths of freestyle, which Dr. Abramson had advised against (as, perhaps, tending to cause the retinal edema to pool), followed by a half hour of vigorous exercises with mat and ball. It was at this point that my vision started to go again—testing my right eye an hour later, I found I could not read even the large headlines of the New York Times. This terrified me, showed me what loss of central vision was like.
Now, two and a half hours later, the edema is settling (if it was edema), though vision in the right eye is still swimmy: lines and surfaces snake and curve. I find it easier to put a patch on the right eye and use just the left, which at least has stable vision.
Inside the blazing, coruscating margin of the scotoma, involuntary imaging of all sorts—faces, figures, landscapes—is going on continually. I have had similar images briefly at the start of a migraine or before falling asleep, but never, as far as I can remember, continuous imagery as I have now.
DECEMBER 25, 2005
Everyone says “Merry Christmas!” and I reply in kind, but this is the darkest Christmas I have ever known. The New York Times today has pictures and stories of various figures who have died in 2005. Will I be among those figures in 2006?
Kate tries to remain upbeat. “Dr. Abramson said that this would not kill you,” she said. “Whatever happens, we will deal with it.” I am not so sure. The idea of blindness terrifies me, as does the thought that perhaps I will be among the unlucky one percent.
DECEMBER 30, 2005
8 A.M.: This morning when I opened my eyes, the dark cloud in the right eye was much larger. Sitting up and looking out the window with the right eye, I could hardly see the sky at all, and I found, looking up at the center of my ceiling fan, that three of its five blades were scarcely visible to my right eye—I could see just the stumps of the blades, close to my fixation point.
10 A.M.: Now, after being up for two hours, I find that the scotoma has retreated and that I can see all but one blade. Position is important, since the edema seems to pool when I lie flat at night—perhaps I should sleep with my head propped up.
I find it difficult to concentrate, to compose myself. Difficult, too, to write—I have not written anything (other than brief letters) since completing a chapter on musicogenic epilepsy a week ago—though I have been thinking, at least, of synesthesia and music.
4 P.M.: Mood and energy much better! I have just written the greater part of “Colored Music,” my chapter on synesthesia.
JANUARY 1, 2006
On this New Year’s Day, I find myself entertaining fears and hopes, facing challenges of an entirely new kind. There is a small but significant chance that this will be my last year—but whether or not this is so, my life will certainly be transformed, has already been transformed, in a radical way. Questions of love and work, of what really matters most, have taken on a special intensity and urgency.
JANUARY 5, 2006
I am impatient and annoyed that I must wait so long for the surgery. Has this holiday period cost precious time, allowing the tumor to continue eating away at my vision? I am reassured that Dr. Abramson will do everything possible to kill this tumor, while preserving as much of my sight as possible. And I am glad to have met him again (though not in these circumstances). He is not only a brilliant physician but an extremely sensitive man—very important when dealing with people who have cancer. He never seems hurried or impatient. He listens carefully to what I say and responds with great delicacy and tact. I think he has my measure, as well as the melanoma’s.
JANUARY 8, 2006
I slept fitfully last night, with dreams and anxieties about the eye, about vision—and, beyond this, about my life. Fears of every sort are rushing through my mind, mixed with (futile) regrets and recriminations that the tumor was not diagnosed earlier. Why did I not realize the import of those close-set wavy lines, the little stars and tussocks, which I had been seeing on the white ceiling of the swimming pool for the last few months whenever I did the backstroke? How could I be so absurd as to dismiss them as “fragments of migraine” or a reflection of my eyelashes in the goggles, when a moment’s experiment would have shown me—as I found yesterday—that they were only to be seen with the right eye and equally visible without the goggles? I could, should have paid attention, questioned, sought clarification months ago.
Bob, however, feels that this would not have made an appreciable difference, but what is damnable—and here I am mad at my former eye doctor, at Kate, and at myself—is that my “annual” eye exam was somehow missed two years in succession, so I went thirty-two months without an eye exam. This delay could perhaps cost me my vision, even my life—but I must not think on this; must focus instead on how fortunate I am that the thing has been caught now and, as Dr. Abramson says, is wholly treatable.
JANUARY 9, 2006: SURGERY
10 A.M.: I am due to go to surgery in an hour or so; I do not know how conscious I will be, or want to be. With previous operations—shoulder and leg surgery—I was eager to know, almost to participate in the proceedings. This time I would like to be out, completely out. Kate and Bob are here with me and are trying to reassure and distract me.
5 P.M.: I was—happily, deliciously—out of it during the procedure. As the fentanyl took effect, the sciatica I have been plagued with for months disappeared, and I drifted into an unconsciousness deeper than the deepest sleep. When I came to, Dr. Abramson asked me a question or two to test my orientation and cognitive status. Where was I? What had been done? I replied that I was in the recovery room and that he had detached the lateral rectus muscle of the right eye and attached the plaque containing radioiodine (I-125, to be precise) to the sclera. I said that I was sorry it was not radioactive ruthenium instead of iodine (I have a thing for the platinum metals) but that 125, at least, was memorable for being the smallest number that was the sum of two squares in two different ways. I startled myself as I said this; I had not thought it out before—it just jumped into my mind. (I realized, a few minutes later, that I was wrong—65 is the smallest such number.) I continued in a loquacious, slightly euphoric state and, for me, an unusually amiable and sociable one, chatting with all the nurses. Kate came in to visit me in the recovery room (she told me later that she had to reassure the nurses that my low pulse is normal, for I am a long-distance swimmer).
Now, six hours later, lying in bed, I see occasional sparkles, scintillations, in my right eye. I wonder if these are from particles or rays emitted by the radioiodine hitting my retina. (It makes me think back to the radioactive clock dials my Uncle Abe used to make, and how I would press these against my closed eyelids as a child and see similar scintillations … could this have played a part in causing my tumor?)
My eye is covered by a thick wad of gauze and a rigid eye patch to protect the eye from any jostling. There is a radioactivity warning sign on my door. People can only enter my room provided they obey instructions—and I cannot leave it. No children or pregnant women are permitted, and no one is allowed to kiss me for the days that my radioactive plaque is in place. I am not allowed to go home; I am under hospital arrest. I am “hot.”
JANUARY 10, 2006
4 A.M.: Up, restless, can’t sleep anymore. The patch presses on my eye, oppresses me (someone had the witty thought of bringing in a book called The Blindfold, by Siri Hustvedt), but my sciatica—which has tormented me for months—is still, mysteriously, in abeyance. The room is quiet, peaceful, undemanding, and I can gaze at the East River slowly moving by.
9 A.M.: Looking through the window, with my unpatched left eye, I am startled to see cars stuck in the branches of trees, like toys. With one eye occluded, I have no sensation of distance or depth whatever, a foretaste of what it will be like if I lose central vision in the right eye.
3 P.M.: Visitors and phone calls nonstop since this morning. Wonderful—but exhausting. Kate went out to find me some comfort food and came back with a bagel and whitefish; other friends have brought chocolates and fruit, matzoh ball soup, challah and schmaltz herrings. It is her
ring and smoked fish I crave most when I am down. Between that and the hospital food, I am well stocked and quite happy to be alone now.
4 P.M.: A pall has descended over the city—a soft gray mist rendering the East River invisible and softening the blocky outlines of the buildings around me. A gentle, beautiful pall.
5 P.M.: A sudden stabbing pain in my eye, then a turmoil of raying purple forms, starfish, daisies, expanding outward from a multitude of separate points. This turmoil seems to fill the whole visual field. It fascinates and frightens me. Is something adrift, askew, amiss in the eye? Or is it my brain filling in, generating visions, in reaction to the cutting off of vision from the operated eye?
7 P.M.: Dr. Abramson came in for a long chat around six o’clock: How was I feeling generally? And what about the eye? I described my “visual storm,” the starfish, etc. He thought it was probably a retinal reaction to the radiation. Picking up on this, I mentioned my thought—half serious, half joking—that the radioactivity in my eye might be strong enough to make my fluorescent minerals glow. Perhaps I could light them up by fixing my radioactive eye, my rays on them—it would be quite a nice party trick! Dr. Abramson was amused, said I should ask Kate to bring the minerals in, and that he would take off the dressing so I could try.