A Note to the Reader:
In March of 2012, as part of BlogHer’s daily writing challenge, I began and completed a medical memoir in serial form. My Right Eye is an account of three medical crises in my life, two of which consisted of cancer diagnoses. I have reprinted the memoir in its entirety here, on a stand-alone page, so that each installment now forms a distinct chapter. Readers can follow the journey from start to finish without having to click to a new post.
The Baby’s Nightmare
Here is a vivid memory from my infancy: I see a row of pastel-colored plastic balls, beaded through a wooden dowel on the headboard of my crib—benign toys meant to give baby something to touch and spin and wonder at. The year is 1957. I remember waking from a nightmare in this crib. One of those toy balls had transformed into something sinister, and looked down with malevolence upon my sleeping self. A ubiquitous television image from the era—the CBS “eye” logo—inspired the transformation.
Television was broadcast in black and white in those days, and this stark image left quite an impression on my credulous infant brain, which decoded the emblem as something dangerous. The iris of the eye, along with its upper and lower lid, was solid black. Layered over the pupil were ominous white letters, “C-B-S.” In my nightmare, this eye looked directly at me, staring at me, and kept on doing so throughout my nightmare, until I finally woke up in a tearful fit of screaming.
According to Siddhartha Mukherjee’s Pulitzer Prize winning-book, The Emperor of all Maladies: A Biography of Cancer, one in three women in the United States will develop cancer during her lifetime. My number came up in November of 2006. The nightmare I’d had as an infant was the first thing that occurred to me when a doctor at the Cleveland Clinic told me that I had a malignancy of my right eye.
The Nightmare Returns
After two years of dealing with what my ophthalmologist advised was an irritation likely caused by allergies, the white, rice-shaped bubble atop the otherwise placid white sclera of my right eye—between my iris and the bridge of my nose—had become really troublesome by November of 2006. It was annoying, irritating, and unsightly. Sometimes, when I blinked, it would slide around. The topical steroids he prescribed would sort of pop it, flattening it out and leaving the area red and venous, and then things seemed to clear up. Soon, though, the bubble would return. I’d had enough of this cycle. It was time for a second opinion.
The next doctor I saw examined me briefly, then told me that I really needed to see someone at the Cleveland Clinic’s Cole Eye Institute, part of the main campus downtown. She would set up the referral. She also told me to stop using the ointment my other doctor had prescribed.
I was already scheduled for surgery—also at the Cleveland Clinic’s main campus downtown—to have my thyroid gland removed that month. What was one more doctor visit? I went into organizational mode and asked that a visit to the Cole Eye Institute be tagged on at the tail end of my preoperative appointments and exams. The eye doctor who saw me was ruefully apologetic: I had gotten “stuck” with him because all of the other physicians were in Las Vegas, attending the big national eye conference. (The irony of a bevy of surgeons converging in the nation’s risk-taking gambling capital was not lost on me.) The stay-behind doctor told me I had a tumor (“No, not a cyst. A tumor.”), and that I really should come back as soon as possible for a consultation with the Institute’s director of ocular oncology.
Ocular oncology? As in eye cancer? I willed myself to not worry; with my upcoming thyroid surgery, I had enough on my plate. I tried to dismiss the fact that this doctor used the word “tumor,” and that the bubble on my right eye now flared up with a vengeance; it was red, engorged, and floating on a sea of scarlet blood vessels. It also ached like hell.
The day before my thyroid surgery, I drove in from Oberlin to the Cleveland Clinic (some 45 miles away) for my eye appointment, joined by my son. I designated him return driver in case they had to dilate my pupils during the eye exam.
Here’s what I remember about that day:
After we arrived and spent some time waiting, a nurse came for me and took me to a room for some preliminary examinations. A technician took numerous high-resolution digital photographs of my eye, which the doctor I’d come to see would then review. Matthew and I waited in his office for his examination and assessment of the photographs. I should have seen it coming, but I didn’t, not really: “You have a malignancy,” he said. “We’ll need to operate.”
I reached for my son’s hand. Despite my best efforts to maintain my composure so I wouldn’t upset him, I broke down. Matthew’s face was grim; he squeezed my hand. Tears formed in the corner of his eyes.
Working its way through the rapid and incoherent jumble of my thoughts was my memory of the nightmare I’d had as a baby. I thought about other things, too—none of them comforting. I sought my old ally, humor: “Doctor, I’m already having surgery tomorrow to remove my thyroid. Could we do this at the same time and save me some money?” He smiled, then said no; he’d prefer to wait about ten days after my thyroid surgery to operate on my eye. He then asked me what was going on with me that necessitated the removal of my thyroid. He took some notes.
Then this doctor, who had suddenly become very important in my life, gently advised me that the next thing we needed to do, while I was still there, was have my eye biopsied. He wrote out an order and instructed me where to go, and where to return after.
I stood up but I was shaking. I remember trying very hard to organize all of his instructions: take the paper, walk to the elevator in the waiting room, take it to a lower floor, give it to the receptionist I’d see at the desk as soon as I got off the elevator. Somehow I made my way there. There were more than a dozen people seated in that waiting room. Did all of them have eye cancer, too?
Someone called my name, and took me to an interior, more clinical looking area where I was to await further instruction. I had my cell phone with me, and made two calls. The first was to my ex-husband. I wanted him to know what was going on, and to make himself available should Matthew need or want to talk with him. The second was to my boss at work. I had already arranged sick leave for my thyroid surgery; now it would have to be extended. My colleagues needed to know I would be out for a longer period of time. I’m embarrassed to say that I cried through both phone calls. Any bravery I prided myself on having abandoned me.
A woman in a lab coat came to get me. It was time to have someone slice open my eye.
Room 101 and the Masquerading Marauder
I’ve always been squeamish about anything touching my eyes. During one particularly harsh Northeast Ohio winter, when my eyeglasses fogged up each time I stepped outside, I finally gave in and got fitted for a contact lens. (I’m far-sighted, and the vision in one eye was strong enough that I only needed one contact.) Even after overcoming my fear of placing a foreign object on my eye, I couldn’t tolerate the sensation of something being there. I gave up, went back to wearing my glasses, and never looked back.
And so it was with great apprehension that I sat in the examination chair for the biopsy of my eye. The fog of fear clouded what happened next: it was either the technician who numbed the area with what I assume was Novocain, or I did it after being asked to apply a numbing agent with an eye cup. But I do remember what followed with utter clarity: she had to position a sort of clamp on my eye to keep it open in order to conduct the biopsy, and she struggled to apply the device.
Do you remember the terrifying scene in George Orwell’s 1984, where Winston, taken against his will to Room 101, the torture chamber in the Ministry of Love, must confront his worst fear? In his case, it was rats, and O’Brien affixed a cage of them to Winston’s head. I’m not fond of disgusting rodents either, but that examination room at the Cleveland Clinic—my own Room 101—revealed to me my own particular fear threshold: Someone poking something into my eye. I resisted and squirmed against the technician’s efforts. She finally gave up, and let her annoyance be known. I felt as though I had let her down. I returned to the doctor’s office an abject failure, unable to complete a crucial task. Not only did I have cancer, I was a coward.
To my surprise, he wasn’t as concerned as I thought he’d be. He must remove the tumor—there was no question of that—it was impinging on my cornea. A pathology report would be done following the operation, revealing the facts about the malignancy. He arranged for his secretary to provide me with the name of a patient who had gone through the same ordeal. I was to call her and, hopefully, gain some comfort from her experience.
Matthew drove me home in the twilight. I remember making more phone calls—one to the former cancer patient. If I ate any dinner, I don’t remember it. I do remember thinking that all I could do now was wait, and prepare for the other surgery scheduled the next day. After all I’d just been through, having my thyroid removed now seemed as though it would be a walk in the park. I was actually looking forward to it—looking forward to being rendered unconscious by anesthesia so I wouldn’t have to think about any of these fears for a while.
Once my dilated pupils returned to their normal state, before going to bed, I did what I imagine anyone does upon receiving a cancer diagnosis: I sat at my computer, logged in, and began Googling “eye cancer.” I suppose I thought that information would be a key weapon in the arsenal I was subconsciously building. I took notes, and am sharing some of them here, with a disclaimer: my research took place in November 2006. It’s completely possible that the statistics have changed. But at the time, this is what I was learning:
Although squamous cell carcinoma of the conjunctiva is rare, it is the most common conjunctival malignancy in the United States. Globally, fewer than three cases per 100,000 people are diagnosed each year. It is also three times more common in men than in women. And it is a chameleon. According to Dr. Christopher DeBacker, a member of the consulting staff in the surgery department of Eden Medical Center in Castro Valley, California, its changeable appearance “may pose a diagnostic challenge as a masquerade syndrome.”
I gave the cancer a name of my own. I took to calling it a masquerading marauder.
The Eye as Metaphor
I rarely have difficulty falling asleep, but that night I didn’t sleep at all. Metaphors and images skittered across the screen of my consciousness, keeping me alert and wakeful—one of the blessings and curses of being a poet. It’s not that I didn’t pray that night—I did—more fiercely than I ever had in my life. But when you are a poet, or any type of writer, I imagine, literary allusions and metaphors supplement your prayers. I hope that doesn’t make me sound pretentious; it’s just the way I’ve always dealt with confusing issues in my life. Don’t understand something? Try to break it down into a poem. Oh yes, and pray.
Here’s an example of what was happening to me that night. My stream-of-consciousness thoughts ran to a poem I’d published years earlier in the literary journal FIELD: Contemporary Poetry and Poetics. (It was the Fall 1991 issue, Number 45, for those who wish to dig deeper.) Called “Correlatives of Pain,” it’s a long poem that weaves aspects of Catholicism into scenes from my childhood. Populated by saints and angels, it featured a mystical woman named Lucia, who stood in for real-life Lucy, a neighbor of my Sicilian grandmother’s, who performed what I referred to as “an inverted baptism” on me when I was a little girl suffering from headaches.
In actuality, Lucy was famous in that Lorain, Ohio, neighborhood for her ability to cast out the evil eye, or what Sicilians call malocchio.
Here’s that section of the poem:
The winds of Sicily in her throat, Lucia begins to pray
for me in Grandmother’s green kitchen.
I’m nine, with a headache, being checked for the malocchio.
Lucia performs an inverted baptism,
a shallow bowl of water in her lap.
The trick is to form an unwavering eye of oil.
She carefully adds a drop,
then another, and another …
they disperse wildly, will not bind in an eye.
The family holds hands, their voices bound in prayer.
And all this time I’m standing before the bowl,
prayers floating around my head, legs aching.
I’m praying for the whole eye.
It’s what I’m told to do. When I look up,
my parents smile down at an oily eye,
like the dead round eye of a fish.
Applause. And Grandmother to Lucia:
Have a canoli, have a cup-a coffee.
My head still pounds, but I am proud.
Such a good girl. Good girl. Good girl!
There’s laughter in the kitchen now,
a cold wave I catch, rocking
back and forth on the porch,
fingering the scapular around my neck.
Make sure she keep some garlic on her,
Lucia says, leaving the house,
making the sign of the cross, trailing water.
Lucia will be a saint someday, I whisper.
Excerpt from “Correlatives of Pain” by Mari-Marcelle Janas. FIELD, Number 45 Copyright © 1991 by Oberlin College Press.
Other allusions surfaced as well. I noted them in a journal I’d starting keeping during this period. The great, blind giants of the literary canon—Homer, Milton, Jorge Luis Borges, Goethe’s Faust—for what did eye cancer lead to if not blindness? That was my soon-to-be new reality, I was convinced. Despite my prayers, despite reaching for the comfort of metaphor, I was already preparing myself for the fact that I could very likely go blind.
Morning came. It was time to get ready for the drive to the Clinic for my surgery, when sleep, at least, would come.
The Back Story
Several years before the white rice-bubble first appeared on my right eye, I was diagnosed with lymphocytis thyroiditis, more commonly known as Hashimoto’s Disease. One morning while applying my makeup, I noticed a bump on my throat, near the suprasternal notch—the dip below the throat that was so beautifully romanticized in the film The English Patient. The bump didn’t hurt, but it was there, noticeable. That’s the thing about cysts and growths: one day you’re not aware of them, the next day you are.
I was still married to my first husband at the time. I showed it to him and he confirmed that he could see it, too. We both thought it might be a cyst, and agreed that I should schedule an appointment with the doctor to have it checked out. Since I had a history with things that go bump on the body, I didn’t delay in making the appointment.
And here I must digress; it might explain why I wrote earlier that I should have seen the ocular oncologist’s diagnosis coming.
One winter, when I was 15-years old and a sophomore in high school, I was seized by the worst pain I’d ever experienced. It was, in fact, my first experience with debilitating pain—a knifing, throbbing sensation that grabbed me in the abdomen, like cramps from the bowels of hell. It was so severe and unrelenting that my mother, who didn’t drive, arranged to have me taken to the emergency room, and I was subsequently admitted for observation. I remember being there about three days, after which the pain finally subsided. I don’t remember what anyone told me in the way of a diagnosis. I do remember that this marked the beginning of an excruciating cycle that would be repeated, at varying intervals, until it reached a crisis shortly after I turned 21.
Before that, the attacks—when they came—would send me to bed for several days. My mother took me to a series of different doctors; I recall one advising me that I had a kidney infection. That would also be the consensus after the occasional ER visit. Finally, a friend of my mother’s suggested she take me to a gynecologist. He astutely diagnosed an ovarian cyst, and prescribed birth control pills in a very low dose, which he said would essentially “burn” the cyst away. My friends in high school had a field day with that one—”Ooooohhhh. Marci’s on the pill! Here come the good times!” I should mention that I went to a Catholic high school, and my friends and I were what was known back in the day as “good girls.” Here I had a medical license to fool around, and it was completely wasted on virtuous me.
Despite the good-natured teasing I took from my friends, the pill worked its magic. The pain was gone. One month after another passed without incident, and it seemed as though this doctor had found the cure. I remember feeling immense relief as months, then a year, then two passed without incident.
It’s strange, but I don’t remember how much time ultimately passed before I was again racked with pain. For some reason my mother did not return me to the doctor whose prescription had seemed to work. Perhaps it was because the pain returned that she felt we needed a new approach. She had begun seeing an osteopath in town, and set up an appointment for me to see him as well. His diagnosis of my problem? Nervous stomach. He prescribed pills that I was to take before each meal. I remember visiting my aunt one day and admiring a charming cloisonné pill-box that she had on her dressing table. She made a gift of it to me. I felt rather special and grown-up, carrying my stomach pills around in that pretty little box, daintily extracting one before sitting down to a meal.
This was my reality when I left my teens. I had graduated from high school, gotten a job working as an administrative assistant to a county court administrator, and was attending night school at the local community college. When the pain would strike, I knew I’d be out of commission for several days. My mother took care of me while I stayed home in bed, waiting for the siege to end. Sometimes we’d have to go to the emergency room. I was still seeing the osteopath. He was still prescribing the “nervous stomach” pills.
I met the man who would become my first husband when I was 20; he was just out of law school, and we liked to joke that we met in divorce court, because that’s where I worked. We started dating. I vividly remember going out to a nice restaurant with him and pulling out my cloisonné pill-box before our meals arrived.
One day in April, I was returning to my office after lunch when the pain hit. It doubled me over, and I barely made it back to the courthouse. My worried colleagues told me I needed to get to a hospital; one of them drove me. I was examined, treated, and sent home with a diagnosis: urinary tract infection.
The following month, just a few days after my 21st birthday, I was again at work when the pain came late in the afternoon. Once again, someone drove me to the hospital. This time was different, though. After a great deal of discussion, with various white-coated individuals entering and leaving my curtained area of the ER, it was determined that not only should I be admitted, I should also have some advanced diagnostic tests.
I remember being wheeled to an examination room and the attending physician suggested that I had an ectopic pregnancy. I rose up on one elbow, looked him dead in the eye, and told him that was impossible. I was a virgin, I said sternly.
I was x-rayed following an injection of a dye that would allow the doctors a better view of what was going on with me. Then, a gynecologist was called in to examine me—not the same one I’d seen years before. After the examination, he left the room. When he returned, he told me—gently—that I had an ovarian cyst the size of a small football on my right ovary. They would have to operate soon, and he already established he would not be able to save the ovary. “You’ll still be able to have children with just one ovary,” he said. “Don’t worry.”
This was good and bad news, but I began to relax. Finally, after so many years, someone had figured out what was wrong with me. I would have to have surgery, but then I would be pain-free. I was actually looking forward to the operation; I wanted to be done with this once and for all.
My mother looked so worried. My boyfriend was there, too, looking concerned. I don’t know where I got the idea to do this, but for some reason I wanted to reassure everybody and show them how brave I was. As the orderly was about to wheel me into the operating room, I gave them a “thumbs-up” sign. I then passed through the biggest door I’d ever seen into a room that seemed as though it was lit up by the sun itself.
It’s Nature’s Way
The next thing I remember was a heavy sensation on my chest and stomach, as though an elephant was sitting on top of me. I gasped for air, and a nurse told me that I was in the recovery room. I remember someone telling me I had been in surgery for six hours.
My next memory is a visit from the gynecologist who performed the operation. He came to my hospital room to tell me how everything went. I don’t remember if my mother or my boyfriend were in the room with me.
“The cyst that we removed had strangulated,” he said. “That’s why you were in so much pain. The fallopian tube had to be removed also,” he added.
Then he paused.
“Your uterus was fine. We then checked the left ovary, to make sure everything there was all right. I’m afraid that there was no ovary. What we did see was a dermoid tumor. The fallopian tube on that side had apparently never developed properly; instead of an opening to receive the egg, it was sealed off. We surgically opened it and left it. We thought—we think that—perhaps, someday, medical advances might make a ovarian transplant possible and you’ll be able to bear children. That’s why we left in the tube. And, of course, your uterus.”
I tried to let this sink in, but I didn’t understand all of his terminology.
“You’re saying that I didn’t have an ovary on the left side?”
“That is correct, yes.”
“What was it you called it? Some kind of tumor?”
“Yes, a dermoid tumor.”
“A tumor that has skin tissue, hair, and teeth.”
I didn’t know what to say. I’d never heard of such a thing—couldn’t imagine that such a thing had been inside of me. I tried to grasp the whole situation; this part of it was too difficult to comprehend.
“So you’re saying that I had a tumor and a cyst? Do I have…”
“We’re waiting for the lab reports,” the doctor said, not meeting my eyes. “But I’m confident we’ll find that both growths were benign.”
“But what does this mean? I can’t have children?”
“I’m sorry. I was not expecting this outcome, but no. You won’t be able to have children. Someday, perhaps, with medical advances …” He trailed off.
“I won’t have pain anymore though, will I?”
“No, absolutely not,” he said, relieved to have some good news for me. “But we know now why you did have pain all those years. That’s over though. No more pain.”
No more pain. It had been such a regular, excruciating part of my life for so long that I have to admit—as devastated as I was by his news, I felt relief. But still …
“I’m starting you on a course of estrogen replacement hormones,” the doctor continued. “You’ll take the pills every day for three weeks, then you’ll be off for several days. You should begin to have regular periods during the time you’re not taking the hormones.”
“How long do I have to take these pills?”
“Until you reach the normal age for menopause.”
I didn’t want to hear anymore. I closed my eyes.
“You rest now,” he said. “I’ll be back to check on you later, and of course I’ll let you know when I have the lab report.”
I must have fallen asleep; I was on strong pain medication. When I awoke, a figure was standing at the foot of my bed.
“I just wanted to check in on you,” said the man. “I want to say—I want to tell you how sorry I am. I’m so sorry.”
Still groggy, it took me a while to register who he was. Then it dawned on me, slowly. It was the osteopath, Dr. W—the one who had prescribed all of those pills for what he thought was a nervous stomach. Apparently, being my doctor of record, my surgeon had informed him about my surgery.
I was not happy to see him. Then, with great clarity, I knew that I should be—and in fact was—angry with him. On at least two occasions during the time he’d been treating me, I asked him if he didn’t think I should have an x-ray to see what was causing the pain, because the pills weren’t working. He told me an x-ray wasn’t necessary and that I should stop worrying; it was exacerbating the nervous stomach.
At some point during those years, with pain as my monthly companion, I came across a sentence in a book or an article—I no longer remember exactly what it was—that pain is nature’s way of telling you something’s wrong. That sentence then morphed into a refrain from a popular song of the day, Spirit’s “Nature’s Way.” The melody would haunt me every time I’d feel the onset of pain, and it would play out in my head, over and over.
I don’t remember articulating any of this to Dr. W, though. I don’t remember saying anything to him at all. I just glowered at him, giving him what my mother used to call “a dirty look.” And I tried very hard not to cry. He quietly left my room.
And then I cried.
I never saw Dr. W again after that.
Help From the Man on the Street
Dr. B was smiling when he entered my room. “How are you feeling today? I have wonderful news,” he said. “Both the tumor and the cyst were benign. ”
I smiled back at him, grateful—relieved—for this news but also for his kindness. “Thank you. Thank you so much.” And then I started to cry.
Dr. B patted me on the hand. “How is your pain? I heard you had a rough night.”
“I’m okay,” I said.
“We have to get you up on your feet today. You need to begin walking a bit each day so you don’t develop adhesions.” He completed his examination, patted me on the hand again, and went on about his rounds.
Later that morning, my mother came in. She smiled.
“Everybody’s asking about you. All of your friends have been calling. How are you?”
“I’m okay” seemed the easiest answer to give people for now. It required the least amount of effort. I had been thinking that I’d have to drop the classes I was taking at the community college. There were only two—economics and tennis for the PE requirement—but when you take night classes and miss even one session, you’ve dug yourself a huge hole. There was no way I’d be able to catch up.
My mother had something she wanted to say to me; I could tell that whatever it was she wanted to tell me was difficult for her. She was worrying, she said, about how she would ever be able to take care of me once the hospital discharged me.
“I don’t see how I can manage it,” she said. “You’re going to need someone with you, and I can’t take any more time off of work.”
She was a clerk-typist in the County Auditor’s office, helping title agents and attorneys process property transfers. She worked at a desk in a large office on the second floor of the new county administration building. My job at the court was in the same building, on the top floor. The pay was terrible, but at least we both had health insurance.
“Don’t worry about that now, Mom. I’ll still be here for a few days.”
“I was talking with V. She said she’d be happy for you to stay at their house. They have a nice, large bedroom with its own bathroom where you’ll be comfortable.”
V was my boyfriend’s mother. Apparently everything was already being arranged. I had met her just a few times; T and I had only been dating since February. She and her husband lived on the other side of town, in a spacious ranch house on a beautiful corner lot. We, on the other hand, lived in a small saltbox house on the south side of town—two small bedrooms and one closet-sized bathroom. “It will be so much nicer for you there,” my mother said.
I sighed. I didn’t want to think about any of this, but I was disappointed. I had just had major surgery. Something really awful had happened to me, and I wanted and needed my mother. I wanted her to rise to the occasion. I don’t think I made this difficult situation any easier for her by letting my disappointment show. I feel awful about that now. It took several years and a good bit more maturity on my part to realize that she was right. Everything—taking care of me, seeing that I had nourishing meals three times a day, getting prescriptions filled and carting me to doctor’s appointments—would have been much too hard for her. She had struggled ever since my father died eight years earlier, in 1969. She didn’t drive, she worked every day, and she suffered terribly from anxiety attacks. As I look back now, I really don’t know how she was able to bear what had happened to me. At the time, I didn’t know she blamed herself. I would find that out later.
It would feel strange, I thought, staying with people I barely knew, even though T would be there with me after work and on weekends. He had just rented his own apartment in town.
“It’ll all work out,” I said. “Let’s not worry about this right now.”
And it did all work out. I recuperated at T’s parents’ home, and his mother could not have been more loving and caring. She should have been a nurse—in fact, that was a vocation she had always wanted, but her own mother thought it wasn’t “proper work,” and so she became a housewife instead. I will never, ever forget her tenderness to me those weeks after my surgery. She holds a special place in my heart, even if she is no longer my mother-in-law.
There was an important conversation I needed to have. I brought the subject up with T after I’d been at his mother’s for a couple of days. He sat down at the side of my bed in his parents’ guestroom.
“Look, I care about you a lot—you know that. But I need you to know that you don’t have to deal with this,” I said. “What happened to me doesn’t have to change your life. You don’t have to stay with me.”
He smiled and took my hand.
“I’m not going anywhere.”
And he didn’t. Six weeks later, on the Fourth of July, he asked me to marry him. Our wedding was in November. One of the first things we did was register with Catholic Social Services in our county to begin the process of adopting a child. I’ll never forget our first meeting there. The director of the agency was Miss Geyroux.
“Here’s how you’ll remember my name, and how you pronounce it. Think of ‘man on the street.” The English word for a man is ‘guy’—and the French word for street is ‘rue.’ That’s how you say my name and how you’ll remember it. ‘Guy-rue.’”
Her mnemonic clearly worked. More than 30 years later, I still remember sitting across from her desk for this conversation.
T and I had to be married one full year before we could formally submit our application; we then had to wait several years more before we could be placed on the list. Once our name reached the top of the list, there would be more waiting until a child became available. Given our special circumstances, however, Miss Guy-rue waived the second requirement and said she’d add us to the list after we passed our first wedding anniversary. There was no need to wait to ensure we couldn’t get pregnant. We couldn’t. That door was closed forever.
But when God closes one door, He opens another. Throughout my entire life, this has been my experience. Even to this day.
A DES Daughter?
We brought our baby boy home in October 1981. He was four-months-old, with a full head of dark blond hair and a Gerber baby smile. We called him Matthew, because the name means “gift of the Lord” and that’s exactly what he was—and has continued to be—for nearly 31 years. He is the joy of my life.
Sometime in the mid-to late 1990s, my mother called to say she wanted to discuss something important with me, and could I please stop by her house on my way home from work. She had heard about a possible class-action lawsuit for children of women who had taken the FDA-approved drug Diethylstilbestrol, or DES, which had been widely prescribed from roughly 1940 until the early 1970s to pregnant women to prevent miscarriage. DES was eventually pulled from the market because it was found to cause a wide range of serious medical issues, including cancer. In fact, DES is the only transplacental carcinogen known in humans.
To my knowledge, my mother never had a miscarriage—either before her pregnancy with me or after. I had even asked my aunt about this when she was alive. But I was aware that my mother had trouble not only in conceiving, but also in carrying her only pregnancy to term.
My parents waited some nine years to have me. I was known as a “change-of-life” baby—my mother was in her early 40s when I was born. Her pregnancy was further complicated by the fact that she contracted toxemia, or preeclampsia, while she was carrying me. In the truest sense of the word, my time in utero was a period of “confinement” for her—with orders to take to her bed until I arrived. Finally, to make matters worse, her doctor discovered that I was a breach baby. As such, I was born by Caesarean section in May 1956.
At some point before the onset of my mother’s toxemia diagnosis, she began to hemorrhage. Her account was, for her, unusually graphic. She and her friends often spoke in euphemisms; if they found out that someone they knew had cancer, for example, they would never say the word “cancer.” It was always, “She has C-A.” Here is the story I remember her telling me:
“I started bleeding, and it looked like a slab of liver on the floor at my feet,” she told me. “Your father was frantic. He called Dr. O, who said, ‘I can save the baby,’ and phoned in a prescription at H Pharmacy. Your father ran to get it, and I took the medicine. The bleeding stopped.”
What had once been a merely fascinating and somewhat dramatic account about my tumultuous road into the world had now become a crucial piece of information. My mother thought that the drug she’d been prescribed was DES, and the news was filled with stories of what were becoming known as “DES Daughters,” offspring of women who had taken the drug during pregnancy and were now experiencing serious reproductive health issues.
My mother blamed herself for the tumor and cyst that devoured both of my ovaries. She felt tremendous guilt. By bringing me this information, she hoped that her guilt could be assuaged. What’s more, she wanted me to pursue the cumbersome option of becoming part of the proposed class action lawsuit. She had acquired the name and address of a law firm working on the case, and she wanted me to contact them to get the process started.
I never blamed my mother for what happened to me. Any blame to go around—and there was plenty—should have been distributed among the long parade of doctors who misdiagnosed me at every turn. But I could not convince my mother that I held her harmless. And even if I could, she needed, in some Catholic way, to feel this guilt. She had been taught that tragic consequences are always tethered to a fault somewhere along the line. She was adamant that I follow these leads.
I had learned long before this that arguing with my mother about anything was an exercise in futility. I took the information, drove home, and told my husband about the situation.
“I don’t think there’s any harm in looking into it,” he said. “You ought to be compensated for all those years of pain and trouble.” And then he told me something that surprised me.
“You know, you could have sued Dr. W for malpractice.”
“What?! Why didn’t you ever tell me this before? Why didn’t we?”
“Maybe we should have. But I just didn’t think you wanted to live through all of that again.”
I considered this for a moment. He was right. I didn’t want to. And even then, 20 years after the fact, I still did not want to.
The next day, with a heavy heart, I drafted a letter to the law firm, briefly outlining my story. I asked if they would consider adding me to their list of plaintiffs.
Poetic Interlude I
This memoir is my first major attempt to address the significant medical events that happened to me in 1977 and in the 2000s, my first go at creative nonfiction, and certainly the first time I’ve ever shared my story in such a format with a wide readership.
Years ago, however, I wrote two poems about the 1977 event. The first was written and published in 1985 by a small writers’ group to which I belonged. The next would appear five years later in The Plum Creek Review, Oberlin College’s student literary journal.
It’s strange to re-read these poems after so many years. I majored in English, with a creative writing specialization, when I transferred to Oberlin College in the late 1980s. I’m a harsh critic of my own work, and I find the first poem rough, the second somewhat better. Both, however, strike me as evasive and cryptic—guilty of what one of my poetry professors would call “withholding too much information.”
This poem is very much a part of my story, and represents the way I viewed things at the time—in a metaphoric, if not melodramatic way.
Elizabeth, Without the Miracle
That silent growth
sat suspended in serene
waiting to strike in the night.
The shrike’s attack
left in its wake a barren
cavern, empty arms,
hollow wails in the nightlight’s glow.
Its signature smiles
across her belly
sealing shut the wasteland,
entombing the womb.
It has flown …
—Poem originally appeared in the 1985 issue of Black River Review under the author’s former name, Marci Janas.
Poetic Interlude II
I wrote this poem when I was an English and Creative Writing student at Oberlin College. It was published in 1990 in The Plum Creek Review, the student literary journal.
A word about the reference to “hunter’s moon” in the title: I was thinking more about its synonymous name—sanguine moon—rather than the fact that this full moon following the autumnal equinox is ideal for hunting. Another name for it is “blood moon.” That’s what I was after, for obvious reasons. But because this is a poem, I didn’t want to be that obvious. (I was reading a lot of Virginia Woolf at the time, and of course the mysterious conceit of Edward Albee‘s play Who’s Afraid of Virginia Woolf? can’t be ignored either.) I also liked the internal rhyme of the first syllable of “hunter” with the word “confronts.” As for the hunter who makes a cameo appearance in the last line, I promise you I was not thinking of Elmer Fudd. I merely wanted someone in the poem to discover the woman. Over the years, I’ve vacillated between taking out the last line, leaving it in, or editing it. With the exception of a misplaced comma, which I’ve taken out, what you’re reading here is the version as originally published.
The Barren Woman Confronts the Hunter’s Moon
which is lit from behind,
like God playing a trick
with an arc light.
It will be twilight
all night long.
The river is a nursery,
and the songs of the barren woman
sink down into the dark water
heavy murmurs whispering
among the mossy stones.
The moon illumines this—
her small drama.
The woman does not love this moon.
Yes it is her mother. Yes,
her cyclical tyrant, cold
sarcophagus, empty, empty
moon. She would like to drown
this moon that looms up at her
from the dark water, protecting
its nest of stones.
She throws stone after stone
at the flickering disc.
It splinters into smaller selves,
then settles back into its own
dumb look, stunned but whole.
So she fills her dress
with stones, and steps
into the river, swollen.
Moments later, shouts ring out
against the stillness
of the moon’s face,
against the stillness
of the face grazing the moon.
A hunter is out for rabbit.
The Needle and the Damage Done
My first husband went with me for my first biopsy. It was a cold January day in 2003, and we were in an examination room at the Cleveland Clinic. The doctor was facing away from me, preparing his instruments. When he turned around, he held in his hand the longest, thinnest, sharpest-looking needle I’d ever seen. I froze, realizing that he was going to stick the thing into my neck. He might have given me a sedative or some sort of numbing agent, but I don’t remember.
What I do remember is reaching for my first husband’s hand. I squeezed it so tightly I was afraid it might break. If I had been biting down on a bullet I would have bitten it in two. I couldn’t believe how painful something so thin could be. After what seemed like an eternity, he pulled the needle out of my throat and that was that. We’d hear something in a week or so about what the bump at the base of my throat meant.
We left the Clinic and stopped at a restaurant in Lakewood for dinner. I was exhausted when we got home.
About a week later, my first husband took a phone call from the doctor, who told him that the lab report from my biopsy was negative for a malignancy. Amazingly, I still have an email from that doctor; I wrote him asking for a clarification about his diagnosis. Here’s his response:
And that was all he wrote.
It wasn’t cancer. I had a problem with my thyroid, to be sure, but nothing that couldn’t be managed. According to the Mayo Clinic website, lymphocytic thyroiditis, in its simplest terms, means that the immune system is attacking the thyroid gland. This explained not only the lump at the base of my throat, but also the reason why I was so fatigued all the time, and why I had been gaining weight. It wasn’t cancer. But it was a skirmish: One system of my body was attacking another system, an internal struggle that had an external analogue. By September of that year, my husband and I decided to end our marriage. On the day before Thanksgiving 2003, our divorce was final.
I was living on my own for the first time in my life. I was 47 years-old.
Can I Get a Discount?
I settled into my new life, unpacking boxes, shelving books, setting up my kitchen the way I wanted. I wasn’t interested in dating anyone; I just wanted to discover myself first. Time passed. The following year I decided that perhaps it was time to test the waters. I explored Match.com and eHarmony without success. Friends tried to set me up, but the guy lived in Nebraska—three states separated us on the map—I knew a long-distance relationships wasn’t for me. Then, nearly two years after my divorce, a friend, in town, introduced me to someone. In town. Our relationship lasted slightly more than one year. By the summer of 2006, I was on my own again. And then, that November, came the diagnosis of eye cancer—the day before I was to have my thyroid removed.
Jack: What do you say?
Joy: I’m a Jew, I’m divorced, I’m broke and I’m dying of cancer. Do you think I get a discount?
Except for the parts about being a Jew and dying, I could relate. In my own lame attempt at humor, I asked the doctor if I could get a two-for-one deal. (Ever efficient, ever thrifty, ever grasping at straws…)
The next morning, after a wakeful night, my former boyfriend drove me to the Cleveland Clinic for my thyroid surgery. He had said, when we broke up, that he would always be there for me. He was true to his word. I was grateful for his support. I would need it.
I wasn’t worried about this operation. I had a great endocrinologist at the Cleveland Clinic, and the biopsy she performed on my thyroid, nearly three years after the first one I’d had when I was still married, did not reveal anything wrong. The ultrasound she’d taken did show that the lump that first appeared at the base of my throat in late 2002 had grown considerably; it was, in fact, pushing my trachea off to the side. I was constantly clearing my throat, and at times had difficulty swallowing. It had to go.
(What would replace the essential hormone produced by the thyroid gland? No stranger to hormone replacement therapy, I would be taking a medication called Levothyroxine. But unlike the estrogen replacement therapy I’d taken throughout the 1970s, 1980s, and much of the 1990s, I would have to take this for the rest of my life. Come to think of it, a discount wouldn’t be a bad idea.)
All in all, I felt that I was in the best possible hands; the surgeon to whom my endocrinologist referred me was also wonderful. There’s always the risk of complications from surgery—one concern, given the location and size of the enlarged thyroid, was whether or not my vocal nerves might be affected. But all went well, and I tolerated the operation well, spending just one night recovering at the Clinic. My son picked me up the following morning, a Saturday, and brought me home to flowers, covered casseroles, and the support of my many friends, including D, my former boyfriend.
I had created a group list on email, and D was sending updates to my friends and family. Many of them, however, expressed concern about the coincidence of my needing to have my thyroid removed and being diagnosed with eye cancer at the same time. One friend, living in The Netherlands for a year with her husband, a professor who was on a research sabbatical, sent D a reply asking for more information about the “thyroid situation” because she had been out of the loop:
“Is the malignant eye tumor associated with the thyroid problem, or is it separate? Was there a malignancy in the thyroid, also?”
To which he replied:
“Marci’s thyroid enlargement was non-malignant, and (as far as anyone can tell) completely independent of the malignancy in her right eye. Marci learned about the eye cancer only Thursday, and she doesn’t yet have full information, but she did use the terms “squamous” and “carcinoma.” When I searched on those terms I found the sentence, ‘Luckily, squamous cell carcinoma is not usually a threat to life as secondary spread (metastasis) is uncommon.’
I also wondered at the timing, but I was even more curious to know if there was any relevance to the fact that I’d had to have both of my ovaries removed 28 years earlier, in 1977. It struck me as interesting, for lack of a better word, that two pretty critical components of my endocrine system had conked out on me. When I asked my endocrinologist, she maintained that there was no connection at all. But I still wonder, even to this day.
I was recovering well. The surgery had left me with the thinnest imaginable “necklace” scar at the base of my throat. I was to take care to stay out of the sun and apply Vitamin E to minimize it. My surgeon was a true artist, and I’m grateful for her expertise. I was exhausted, but feeling more like myself with each passing day.
All I had to concentrate on now was my recovery. I had to gear myself up—physically and mentally—for my upcoming eye surgery in a few days. Oh, and await the results of the lab report on my thyroid.
A Call During Dinner
It was the day after Thanksgiving, about a week since my thyroid surgery. I was sitting in a booth at a popular Chinese restaurant in town, across the table from a good friend of mine. M, a violinist with an incredibly busy schedule, knew I had cabin fever and was itching to get out of the house, so she made time in her day to take me out to dinner. All of my friends were being so kind to me! I’d soon be back at the Cleveland Clinic for the operation on my right eye, but I didn’t want to think about that. I wanted to enjoy my dinner and my friend’s company.
The server had just taken away our soup when my cellphone rang. It seemed rude to take a call during dinner, but a 216 area code showed up on the screen, meaning the call was coming from Cleveland. It could be one of my doctors. (I now had so many I began thinking of them collectively as a team.) M indicated she didn’t mind, so I answered the phone.
She sat quietly, listening to my side of the conversation, which must have sounded like this:
— Yes, this is she.
— Oh, thanks for calling.
— You did?
— It did?
— I see.
— Well, I’m having eye surgery next week, but I’ll call her first thing Monday morning.
— All right.
I put the phone down and looked at M. “Well,” I said, “I have thyroid cancer.”
First There is a Cancer, Then There is no Cancer, Then There Is: Part I
So here we are: part 13 of the series. How’s that for timing? I thought about making like a hotel and skipping over to the 14th floor, so to speak, but how silly is that? I mean, up to this point in the narrative, I’ve received two cancer diagnoses. I should care about luck now?
M, my dinner partner in the Chinese restaurant, looked at me in amazement. “That was the Clinic?” I nodded. “And you have thyroid cancer?” I nodded.
“My God, you’re taking it well.”
Strange as it must have seemed to M, I suppose I was. What was I going to do? Why wasn’t I falling apart? I was about to have surgery for eye cancer, and after a clear biopsy on my thyroid, was told—there was no question—that I actually did have thyroid cancer. Why was I so calm? I suppose I was numb, for one thing. Stunned. I suppose I felt as though there were something inevitable about it all.
Years ago, a psychology professor in one of my night classes told a story about a woman who had won the lottery. All her family, friends, and co-workers were thrilled for her—she threw a big party, and they all came to congratulate her. Against all odds, months later she won the lottery again. This time no one congratulated her. Every reaction was muted. The point of his story (and his theoretical interpretation) was that people are psychologically primed to communicate an appropriate response to something the first time it happens. But they never expect the exact same thing to happen again. When it does (if it does), they’re unsure how to respond.
I was told I had eye cancer. Then I was told I had thyroid cancer. I felt unsure how to respond.
The server brought our dinners. I don’t know how I managed to eat, but I did. Perhaps a part of me knew (rightly) that I needed to keep up my strength.
I called my endocrinologist the first thing Monday morning, before leaving the house with my son for my eye surgery. I could hear the concern in her voice. “The problem with a fine-needle biopsy,” she told me, “is that it will only extract cells from one area; the area we studied was clear. But with the entire thyroid in the lab, of course, we have a different story. Try not to think about any of this now. Concentrate on getting through your eye surgery. We’ll schedule you for an appointment as soon as you’ve recovered enough to come in. We’ll need to determine what course of treatment you’ll need.”
God, this was exhausting. Of that much, I was sure.
Through a Glass, Far too Brightly
Although I knew I’d be sent home the same day of my eye surgery, I hadn’t counted on the anesthesiologist telling me that all I’d be getting was a local anesthetic. A local? No, no! I wanted to be pulled completely under—give me the full treatment—knock me out, send me to sleep so deeply that when I awaken, I’ll have no memory of the doctor cutting into my eye. But no. No. To my surprise, they don’t do that. They did give me something that made me unaware of pain and discomfort, but it was not the full treatment. I’m not sure why, and I no longer remember. When the surgery was over, and they determined that I was sufficiently awake and aware, they told my son that he could drive me home.
I wish that my memory of all this were clearer. I seem to recall that the room where the procedure occurred was more like an examination room than an OR. I could be wrong about that. I was also surprised that they did not put a patch over my eye. Instead, the doctor used what he called a bandage contact lens. I was given a prescription for pain medication and post-operative instructions, then we were on our way and left to our own devices.
I was thinking clearly enough to ask my son to drop off the prescription at CVS before we went home, and it’s a good thing, because when the effects of the local anesthetic wore off, I gained a real understanding of the Biblical expression “smite the eye.” My eye had been smote. There was no other word for it. The pain was relentless and scissoring. The drugs were powerful and sent me tumbling back to sleep. That was good. Sleep was what I wanted. Sleep, and to not feel the pain.
All of this took place in late November—winter in northeast Ohio—the brightest, sunniest winter that we’d ever had. Or so it seemed. I loved my house—I bought it because its many windows let in the sunshine—but now I wished I lived in a black box. The sun just poured in, and there was nowhere to hide from it; I didn’t have curtains or shades on any of the downstairs windows. I wore my sunglasses indoors, but they didn’t help all that much. My only respite was my bedroom upstairs, and so I spent most of the day up there. When the sun went down, I went downstairs.
An email update that D sent to my family and friends the day after my eye surgery summed things up pretty well:
She is in typical post-operative pain and her eyes are very sensitive to light (she says: ‘I feel like a vampire who comes out only at night’) but her spirits are good, she’s got good painkillers, and she’s lucid and cogent. Because it’s hard for her to read, she’s listening to books on CD (Right now, ‘To Kill a Mockingbird.’)
I believe it was Joanne Woodward who read To Kill a Mockingbird for the release I’d wisely checked out of the library days before my surgery. Hearing Harper Lee’s wonderful words in Woodward’s beautiful, soothing voice gave me such comfort. It was like a lullaby.
Because I also knew I would need to laugh, I had checked out several David Sedaris books on audio, too. His unmistakable voice conveying his hilarious, lopsided view of the world was another dose of great medicine. David, you signed one of my books after a reading you gave at Oberlin College several years ago. I should have told you then how much you helped me after my eye surgery, but I didn’t want to hold up the line. If you ever read this, please know that you saved my spirits. You truly did.
Anatomy of an Eye Operation
Before he operated on my eye, Dr. S wrote a letter to the local ophthalmologist whose referral brought me to his attention, telling her about his diagnosis: squamous cell carcinoma of the conjunctiva involving the cornea. He proceeded to explain:
As you know, squamous cell carcinoma of the conjunctiva tends to be low-grade with a low risk of metastasis. It is also associated with a low risk of recurrence. I have recommended a wide excision with cryotherapy and corneal alcohol epitheliectomy. Considering the area of wide excision, maybe about 12 mm in size, a possibility of an amniotic membrane graft and bandage contact lens was also considered.
Overall, I expect her to do well. The surgery will be scheduled over the next few days and she will also undergo a CT scan of the head and neck to exclude any lymphatic spread. I will keep you informed of her progress.
Of course, it was some time after my surgery before I could read my copy of this letter. But I knew, more or less, what the surgeon had needed to do; he explained everything to me, and sketched out what he had done, when I had my first post-operative appointment. The first of many.
“Everything is healing nicely,” he said. “It’s looking fine. The tumor is gone. Your cornea was not affected by the tumor, but because of the margins I had to remove just a little corner of your cornea; nothing that will impair your vision. As you know, when I examined you with the microscope before your surgery, the retina and optic nerve both looked healthy, so I expect your vision to be unaffected by any of this. It will be two weeks for the pathology report.”
The tumor itself was about 6 mm by 6 mm. It’s standard procedure that when a malignancy is excised (removed), a portion of the tissue surrounding it on all sides must be excised as well. In my case, the incision of the conjunctiva was 8 mm by 10 mm. (The conjunctiva is the thin membrane covering the sclera, which is the white of the eye.)
Because the sclera was also involved, the surgeon had to perform what his post-operative notes refer to as a “superficial scleral dissection … 8 mm in height and 5 mm anteroposteriorly,” or front to back. To the best of my ability to interpret his operative notes, this was the depth of the incision. The line that serves as a border between the sclera and the colored part of the eye, the limbus, was also involved, which is what the surgeon was talking about when he said they had to nick into a part of my cornea; he had to cross that limbic border to clean out every trace of the tumor.
He stanched the blood during the surgery with “bipolar cautery,” and then he proceeded with “double freeze-thaw cryotherapy,” which is exactly what you suspect it is. He froze my eye. Left behind after all of this slicing was a wound too large to close. He filled the hole in my eye by suturing an amniotic membrane graft into it. Then he placed a 22 mm bandage contact lens over my eye, applied eye drops, and someone wheeled me off into a recovery room.
I have no idea how long any of this took, and the operative notes, to my surprise, don’t indicate that. I still marvel that this happened to me, and that I got through it.
And here I should say a word about my surgeon: he was (and is) brilliant, and the best at what he does. He’s written extensively about eye cancer and eye surgery, and it was my good fortune that he’s the one who handled my case. He had access to all of the latest advances and techniques, and I suspect in some cases he might have pioneered them. I don’t want to think about my outcome if someone else had done my surgery.
About ten days after the operation, I was still in tremendous pain. I had been taking Oxycodon, and didn’t like the way it made me feel. When I slept, which seemed all the time, I had strange dreams. On one or two occasions I was aware that I was hallucinating. The pain was so severe, however, that there really wasn’t anything as strong as the Oxycodon to counter it. The eye drops I was prescribed offered some relief, but not much and for too short a period of time. It seemed strange to me that I even needed them; my eye was watering on its own almost nonstop, which only added to the pain.
The light streaming in through the windows of course made everything worse; by now there was a good blanket of snow on the ground, which reflected and intensified the bright sunshine. A good friend of mine who worked at the Clinic arranged for me to have a pair of surgical sunglasses—the type worn by people who have had cataract surgery. I wore those with my regular sunglasses each time I went downstairs, and for every hour-long drive and back to the Clinic in the bright winter sun for my post-operative appointments—not just for my eye, but also for my thyroid—grimacing with pain all the way.
Thank God for my friends, who took turns chauffeuring me to Cleveland, sometimes twice a week. I never would have gotten through this without them. Even with their loving help and support, though, I still felt alone.
I was in the strangest zone of twilight I had ever known.
And so the waiting. The pathologist was on vacation; it would be two weeks before I’d get the report on my eye. In the meantime, I was still going back and forth to the Clinic for post-operative appointments—both for my eye and for my thyroid surgery.
The surgeon who operated on my neck was pleased with how well I was healing. She did a bit of clean-up around the incision, and it was barely noticeable. I joked that I’d just wear a lot of jewelry around my neck, but in truth it didn’t look as though it was going to require much camouflage at all. Around this time D sent another email update to my friends and family revealing new information from the thyroid pathology report:
… On the down side, when I looked at the written report I found that the thyroid malignancy was much larger than I had been told: It was 0.7 cm in diameter, not 0.07 cm, and the threshold for follow-up chemotherapy is typically 1.0 cm. Marci and her endocrinologist will have to consider the best course of action.
As they say, size matters.
This gave me quite a lot to think about. I did most of my thinking and reflecting at night, since I slept through much of the day to avoid the sunlight. When I came downstairs to rest, my preferred spot was a chaise lounge in a corner of my living room, with windows on both sides, which is why I turned to it at night. Nestled there in my cocoon of darkness, I prayed, of course. I might even have engaged in some bargaining with God. (It’s strange I don’t remember those negotiations.) But what I do remember, distinctly, was making my peace with death.
I think the fact that so much darkness surrounded me—I slept during the day and rested at night in the dark—helped me to accept my mortality. I didn’t want to die—that would not have been my first choice—but it didn’t seem frightening to me. There was something relaxing about the prospect. No longer being in pain seemed like a good trade-off to me. And being enfolded in the arms of a loving God. Just letting go and letting be…
I believed in God. I still do. In fact, there never has been a time when I doubted His existence. It’s easy to say that this was merely the indoctrination I’d received through years of Catholic schooling, but I knew there had to be more to it than dogma. Throughout all the turbulence of my life—my father dying when I was 13, experiencing a traumatic medical crisis at 21, losing my mother to Alzheimer’s, going through a divorce—I never felt as though I was utterly alone—even during the times when I really was alone. I always sensed something stronger than me was holding me up.
I had survived this long, hadn’t I? I had managed to make a go of things.
Now please don’t get the wrong impression of me. I’m a lackadaisical Christian. More often than not, church on Sunday morning for me has meant coffee and extra time with the newspaper. I admire people who have the discipline to express their faith outwardly and regularly—whatever that faith may be. My approach—my relationship with God, whom I believe is a God of love—has generally been more subdued. And I don’t think that’s wrong.
I’ve made mistakes, broken a few Commandments, but I’ve always felt His forgiveness. And as a result, I’ve tried even harder to be good.
I prayed a lot during this time. I prayed for God to help my son, to keep him safe and strong. More than anything else, my son was what weighed most heavily on my mind: how he would be, how he would manage, if the worst happened.
Although I was no longer a practicing Catholic, a wonderful priest who has known me since I was in high school came to visit me during this time. We spoke about these matters, he took my confession, and he gave me his blessing. I felt at peace.
First There is a Cancer, Then There is no Cancer, Then There Is: Part II
When one is ill, one’s focus becomes oneself. That’s exhausting and debilitating. And boring. I wanted to think about other things and other people. I wanted to think about the wider world beyond the Cleveland Clinic. I wanted to engage in daily life again.
On a Wednesday in mid-December, I felt well enough (which is to say I had started tapering off the pain medication and was beginning to feel more like myself) to have a friend take me out to lunch. We stopped off first at my office so that I could see my colleagues and reorient myself for returning to work the following Monday. My first operation, to remove my thyroid, was on November 17. Allowing for the days before that surgery, when I had doctor appointments for my eye and preoperative testing, I had missed an entire month of work. Even after returning, I’d still need time off for postoperative doctor appointments. Then, with the holidays, our offices would be closed between Christmas and New Year’s. I wouldn’t be back on a bona fide work schedule until after the New Year. I missed the hectic, healthy pace of my job, filled with normal things to do and worry about.
Making the rounds of the different offices, being greeted by hugs and wrapped in love and concern, brought home to me how appreciated I was, and how missed. I had cancer, yes. But I was damn good at my job, and people kept telling me how they couldn’t wait for me to return. As re-entries go, this was a balm. I would soon have things to worry about other than cancer. They would pale in comparison, but my mind would be exercised in other areas again. That was a good thing.
I wore my sunglasses throughout the day, but showed off my thyroid surgeon’s beautiful handiwork to everyone who wanted to see. It was a perfect arc at the base of my throat, razor-thin and pale. I shared my jewelry joke with one colleague who promptly whipped open her bottom desk drawer and pulled out a choker. Made from strands of soft gray cloth and studded at the center with some pretty impressive (albeit fake) bling, she handed it to me.
You have to know M to know that it was not at all surprising that she, an elegant woman with impeccable taste and style, would happen to have some spare jewelry lying around in a desk drawer. Nor was it surprising that she gave it to me. With M, class went hand-in-hand with generosity.
I had amazing friends.
When I returned home late that afternoon, exhausted but content, the message light was blinking on my answering machine. My eye surgeon’s office had called to confirm my post-op appointment for the following morning.
D, who had arranged for another professor to cover his lecture, drove me in. After all of his help and support throughout this frightening experience—way above and beyond the call of duty for former boyfriends—it was appropriate that he was with me when my eye surgeon gave me the news:
“We’ve received the report from the pathologist, and it is excellent. The cyst we removed was benign.”
A cyst. And it was benign. I was shocked. Relieved, but shocked. He, one of the top experts in the country in his field, had told me that it was a tumor—not a cyst. He had examined me and said I had a malignancy. I’d just had 10 millimeters carved out of my eye; did I really even need to have the surgery?
Oh yes. I did. It turns out that I had a “nodular cyst” that presented, in every way, like eye cancer.
“This is a rare condition,” Dr. S said. “It required many cytological tests to pin it down. There is no question that we had to take it out; it was encroaching upon your cornea.”
Here’s the final diagnosis as it appeared on the surgical pathology report:
CONJUNCTIVAL TUMOR, CORNEOSCLERAL DISSECTION – BENIGN EPITHELIAL INCLUSION CYST. (SEE COMMENT)
— ACUTE AND CHRONIC INFLAMMATION AND REACTIVE EPITHELIAL CHANGES.
There is amorphous hyalinized collagen around the cyst. Congo red stain for amyloid is negative.
It’s only now, nearly six years later, that I’ve looked up the meaning of some of these terms. At the time, it was enough to hear the word “benign.” I knew what that meant. That was all I needed to know.
But how ironic! I had been living with a bump on my neck that I was told was not cancer, and it turned out that it was. Then, a bump on my eye that was supposed to be cancer wasn’t cancer after all.
My emotions were see-sawing. On the upswing, when the see-saw hoisted me toward the sun-filled sky, I didn’t mind the brightness at all. I was still in pain, my vision was still blurred, and I was extremely sensitive to the light, but I didn’t care. I did not have eye cancer. I did not need to have head scans to learn if a cancer that wasn’t there had spread to my brain. I was not going to go blind.
When the see-saw jolted me back to earth, I remembered that I still did have cancer. I had thyroid cancer. And a few days later, my endocrinologist would tell me what we were going to do about it.
The Rising Tide of Thyroid Cancer
A headline in Parade earlier this month jumped off the page as soon as I saw it:
“Thyroid Cancer: Why Is It on the Rise?”
The brief item, by health and nutrition journalist Camille Noe Pagán, addresses the fact that for reasons which remain unclear, thyroid cancer diagnoses rose a staggering 173 percent between 2002 and 2012, making it one of the fastest-growing types of cancer in the United States. I received my diagnosis in 2006.
Noe Pagán interviewed Dr. Robert Smallridge, chair of the division of endocrinology at the Mayo Clinic in Jacksonville, Florida. He attributes part of the increase to better screening and detection, but points out that “research suggests other factors must be at play.”
What could those other factors be? Radiation exposure, such as the type found in dental X-rays, is a known cause of thyroid cancer. Because I’m an ounce-of-prevention girl, I get my teeth cleaned and checked regularly. I’m sure, though, that I’ve had no more than the recommended allotment of dental X-rays; I can’t believe that a lifetime of systematic devotion to dental hygiene caused my thyroid cells to mutate. Or did it?
And here’s something else to think about: The thyroid is an endocrine gland. So are the ovaries. A benign tumor and cyst obliterated my ovaries 30 years earlier. Did that have anything to do with what was now happening to my thyroid gland?
The nodular cyst on my right eye was clearly an anomaly, an interloper in the perverse parade of cellular dysfunction traipsing through my body for more than half my life.
These are some of the questions and observations I had for Dr Y, a young and personable endocrinologist from Romania. Not surprisingly, she had no answers. But she did amplify the nature of my cancer:
“The pathology report actually showed two malignancies. Yours is papillary thyroid carcinoma, and if you have to have cancer, that’s the kind to have because it has such a high cure rate—80 to 90 percent survive ten years after diagnosis. And your tumors were small and encapsulated. The prognosis for patients with these types of tumors is very good.”
“So what do we do for treatment? Chemotherapy?”
“No, not chemo. I want to stress that Dr. M did a wonderful job removing your thyroid—surgery would have been the first step. But as good a job as she did cleaning out your thyroid, there’s always the chance that some thyroid tissue remains. These emit chemical signals that can confuse the results of future tests. And, despite the fact that your tumors were encapsulated, there’s always the possibility that a rogue cell could migrate to any remaining bits of tissue.”
“Okay, so I had the surgery and the thyroid is gone. That’s a good thing. The cancer’s out of me. But if I don’t have chemo, what do I do? Radiation?”
“Not what you normally think of as radiation. You need to know that I presented your case to all of my colleagues in the department. I had my own idea of how we should proceed, but I wanted to get their opinions first. These guys are the best at what they do, and our consensus is that we proceed aggressively. And that was my inclination.”
“What do you mean by ‘aggressively’? Are you suggesting another operation to make sure everything’s gone?”
“No. Look, there are really only two options. The first is to do nothing, to trust that the surgery got all the cancer, and not worry about any likely or unlikely remaining bits of tissue. The second option is to kill off whatever remaining bits of tissue exist with a single, low-dosage treatment of radioactive Iodine-131.”
“How does that work?”
“In about five to six months, you return here to the Clinic, to the Nuclear Medicine Department, after preparing yourself to take the pill. You prepare by stopping your Synthroid and going on an alternate hormone-replacement therapy for two weeks, followed by no hormone-replacement therapy at all. You’ll also have to be on a completely iodine-free diet. The Thyroid Cancer Survivors’ Association has the list of foods to avoid and a cookbook to help you with recipes for what you can eat. You can find all that on the Internet. It’s important to be completely, totally iodine-free when you take the radioactive pill, because if there’s even a trace of iodine in your system, the radiation will zero in on it, doing more harm than good.”
This was a lot to take in. I tried to process all she was saying: No additional surgery. No chemo. No radiation per se, but a radioactive pill instead. This sounded promising, but I couldn’t get past the prohibition on medication. I’ve never been what you’d call a dynamo. Now, without my trusty pills to keep me on an even keel, I could see myself sleeping all the time.
“How will I function? I won’t have any energy if I stop taking my Synthroid.”
“It is difficult, it will be difficult. But you get through it. You get through it because you have to. We really believe this is the best course of treatment for you. It’s aggressive, and we think we really need to be aggressive.”
I was glad D was with me. I wasn’t sure I was following any of this, and I knew he was taking good notes. I also didn’t have to decide on the spot. Dr Y told me to go home, get some rest, and think about it.
By now I’d dodged so many bullets. Maybe taking one bullet-sized radioactive pill wouldn’t be so bad. As risk-averse as I am, it sounded better than the alternative, which was to do nothing.
And I’m not a “do nothing” kind of girl.
Before and Aftereffects
For weeks I’d been responding to email by typing with one hand; the other held the magnifying glass from my compact edition of the Oxford English Dictionary so I could make out what I was seeing. I’d not been able to read a book or my beloved New Yorker and New York Times for a month, but by the end of December the world was clear and whole again. Dr. S, my eye surgeon, removed the bandage contact lens from my right eye and the three stitches that remained. D took me in for that appointment, holding tight to my hand while marveling at the steadiness of the surgeon’s.
Winter turned to spring. I was regaining my strength after the two surgeries, adjusting to the vagaries of my hormone-replacement medication, and traveling to the lab for regular blood work to check my levels of TSH (thyroid-stimulating hormone). I was also back at work.
Since I had decided to proceed with the radioactive Iodine-131 treatment, I had to prepare myself by becoming completely hypothyroid. This meant that for two weeks, I stopped taking Synthroid and instead took an alternate hormone therapy. After that weaning process, I had to stop cold, taking no hormone replacement medication at all. In addition, I went on a highly restricted diet to ensure that there were no traces of iodine in my system.
These are some of the foods I had to avoid:
- Iodized salt and sea salt
- Seafood and sea products, and foods containing sea-based additives
- Dairy products
- Commercial bakery products
- Beans, soybeans, and soy products
I could eat fresh meats in limited portions (no more than five ounces per day), grains, cereals, and rice.
I could also enjoy fresh fruits and vegetables (except, for some reason, potato skins); unsalted nuts and unsalted nut butters; sugar, jelly, and maple syrup; vegetable oils; and, surprisingly, sodas, coffee, tea, beer, wine, and other alcohol. Homemade foods were permitted, and the Thyroid Cancer Survivors’ cookbook offered a host of recipes, including those for baking bread without iodized salt.
I hope that no one reading this ever has to go through this ordeal. The last two weeks before taking the radioactive pill were agony. I had absolutely no energy, my thinking was fuzzy, and I hated the limited diet. On the upside, my former boyfriend loved to bake. He baked a delicious bread for me using a recipe from the cookbook. In fact, several of the recipes I tried were so good that I still make one of them to this day, happily adding salt. I even included one of them (for Greek Grilled Chicken) in the “Food for Thought” section of the blog.
I was so lethargic and logy by the time it came to get to the Clinic to take the nuclear pill, D basically had to drag me there.
I felt a certain amount of trepidation, walking into the nuclear medicine section of the Clinic. I put on a gown and someone escorted me to a room at the end of a long corridor. I sat behind a screen while a technician pulled out what looked like a small safe deposit box. Inside was the pill I was to swallow. I was warned not to let it linger in my mouth; I was to get it down as quickly as I could. I was afraid my throat would close up and I’d struggle to swallow the pill, but I managed to get it down. And that was that.
Here’s an excerpt from an email I wrote on May 21, 2007:
Please forgive another mass email, but my energy level is pretty low, and this is easier for me right now.…
I do have good news: today’s scan (done with a gamma camera for you science buffs) indicates that the thyroid cancer did not spread elsewhere! I did, however, need to have the therapeutic dose of radioactive iodine, so I’m afraid I’ll be lollygagging around the house until Thursday. [Apparently, this was the date when I could resume my regular medication and a normal diet.] My doctor is extremely pleased with the way things are progressing, and especially pleased that she insisted on such an aggressive protocol.
It is now almost five years since my cancer treatment. Periodic ultrasounds of my neck show that the cancer has not returned. Other than having to use eye drops several times a day, I’ve not had any problems with my right eye. Or my left one, for that matter.
I’m reading a beautifully written book, a “biography of cancer” by oncologist Siddhartha Mukherjee called The Emperor of All Maladies. He says that all patients begin as storytellers, as narrators of suffering. They are travelers who have visited the “kingdom of the ill.” In the days following my eye cancer diagnosis, I attempted to write an essay called “My Right Eye.” I knew how I wanted it to begin—with the nightmare I’d had as a baby that you’ll recall is the first installment in this series. But I couldn’t get much farther than cursory research into conjunctival sarcoma. I was frightened, busy with medical appointments, and far, far too close to what was happening to me to really be able to narrate my suffering. That essay lay unfinished for years, until the daily blogging challenge on BlogHer presented me with an opportunity to take it up again. And that is how I ended up writing this series.
A brief note about the process: With the exception of the first installment, which I edited fairly extensively from that aborted essay, I wrote every part in this series directly on WordPress’ editor mode. I tried writing it out in Word first, but that seemed an impediment; I found it easier to just type and write, type and write, as I went along here in WordPress. I’d re-read a draft before posting, doing surface edits or rearranging a sentence or paragraph, but what you’ve been reading is pretty close to how it just came out of me. No one read any drafts before I hit “publish.” I did refer to old notes and emails from the period—I’m so glad I kept them! But I wish I could remember in greater detail all I went through. I guess the mind knows what it can best manage to hold on to.
In the course of my writing, I learned a few things. Most distressingly, I learned that the woman I had called at the suggestion of my eye surgeon—the patient of his who’d had the same eye cancer surgery as me, died in 2010. I came across her work email in my files; when I Googled her name and the name of her company, I found her obituary. Although the cause of death wasn’t stated, she apparently had been in hospice; the family had requested that in lieu of flowers, a memorial contribution be made to a palliative care center. L was so kind and reassuring the one time I spoke with her—upbeat, optimistic, and encouraging. She was one of many flowers that I found along the rocky path I walked in the months from November 2006 through May 2007.
In researching the series, I discovered that there might be an alternative for Synthroid that no doctor had ever told me about—desiccated thyroid, an old therapy made from porcine thyroid glands. There seems to be a lot of controversy surrounding it, but then there are doubts about the efficacy of the synthetic drug that I’ve taken for nearly six years. It bears looking into, at the very least.
A comment sent by a reader reminded me about a book by television journalist Betty Rollin that helped me when I was going through my first medical crisis—the tumor and cyst leading to my oophorectomy in 1977. After I replied with the name of the book, First, You Cry, it occurred to me to try to locate Betty, to thank her for sharing the story that helped me so much. I’m fairly relentless when it comes to research; I found a Manhattan telephone number that I thought could be hers. When I dialed it, a woman answered. I asked if I could please speak with Betty Rollin, and to my delight, it was she on the other end of the line. She told me about her most recent book, Here’s the Bright Side: Of Failure, Fear, Cancer, Divorce, and Other Bum Raps, to let me know that there is a flip side to the terrible things we endure. After we got off the phone, I went to the library and checked it out. I’m reading it now. Here’s something for us all to think about:
I woke up one morning and realized I was happy. This struck me as weird. Not that I didn’t have all kinds of things to be happy about—love, work, good health, enough money, the usual happy-making stuff. The weird part is, when I thought about it, I realized that the source of my happiness was of all things, cancer—that cancer had everything to do with how good the good parts of my life were. …It turns out there is often … an astonishingly bright side within darkness.…There are even studies, scientific studies (!) that show that people often say they have benefited from the terrible things that have happened to them.
Having lived the life I’ve lived since one erroneous cancer diagnosis and one all too accurate cancer diagnosis, I know this is true. At midlife, remarried to a wonderful man, I’m happier than I’ve ever been.
There’s a dividing line between health and cancer. (Or between divorce and remarriage, or any other dichotomy you can think of.) In my case, I found that there’s a lot to be said for thinking you’re going to die—it makes you appreciate each bright, pulsing, living moment that comes after that dividing line. The poet Wallace Stevens wrote that “death is the mother of beauty.” I understood his meaning in the abstract when I first read “Sunday Morning.” I even wrote my own poem about it, conflating my uncle’s death from cancer with my father’s death from heart disease. But now I have lived it. Now I really get it.
Life is beautiful.
© 2012 Marci Rich
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