by Azra Raza
For himself, Harvey faced and accepted the truth. When I would become upset by the intensely painful nature of his illness, he was always calm and matter-of-fact. “It’s the luck of the draw, Az. Don’t distress yourself over it for a second.” It was an acceptance of the human condition with almost inhuman composure. “We are all tested. But it is never in the way we prefer, nor at the time we expect.”
W. B. Yeats was puzzled by the question: “The intellect of man is forced to choose / Perfection of the life, or of work.” Fortunately for Harvey, it was never a question of either-or. For him, work was life and life was work. The two were inseparable. Once, toward the end, when I asked him to work less and maybe do other things that he did not have the time for before, his response was that such an act would make a mockery of everything he had stood for and had done until that point in his life. Work was his deepest passion outside of the family. Three days before he died, Harvey had a lab meeting at home with more than twenty people in attendance, and he went over each individual’s scientific project with his signature boyish enthusiasm. Even as he clearly saw his own end approach, Harvey was hopeful that a better future awaits other unfortunate cancer victims through rigorous research.
It all started on a gorgeous Chicago morning in February 1998. We had just returned from Hawaii. With his newly acquired tan after a week of reading and relaxing on the beach, playing with four-year-old Sheherzad in the water, Harvey looked the best I had seen him in a long time. Several months prior, he had suddenly become conscious of a few extra pounds he had put on, and he had placed himself on a strict diet. His running partner, Henry Black, a fellow New Yorker and one of Harvey’s best friends, was forced into longer and more frequent jogs by the water on Lakeshore Drive. Harvey was lifting weights in the gym in our building on Fullerton Avenue, and so pleased was he with the results that he asked me to go shopping with him for new, better-fitting clothes. I was pleasantly surprised. Normally, I would have to nag him for weeks before he agreed to go within a mile’s radius of a mall. That morning, however, Harvey did not come out of his study for a long time. Sheherzad was getting late for her kindergarten class, just down the road from us. Harvey loved to walk in the mornings with her and often left work in the afternoon for a couple of hours to bring her home and play with her. Finally, I went searching for him. He was sitting at his desk, his feet propped up, looking out the glass windows that lined two walls in his study.
Words are not necessary when you have been with someone for almost twenty years; his body spoke volumes. My heart missed a beat.
“Are your children okay?” I asked. Harvey was extremely close to Sarah, Mark, and Vanessa, his three grown children from a previous marriage.
“Yes, and so are my parents,” he said, anticipating my next concern.
“Then what’s wrong?”
In a hundred years, I would not have suspected what he said next: “I have an enlarged lymph node in my neck.”
After confirming that there was indeed a small, hard presence in the left anterior cervical area, I said, more to reassure myself than him, “It’s probably an infection you picked up in Hawaii.”
“No,” he said. “It has grown slowly over the past couple of months. I can’t ignore it anymore.”
Ever since he had survived one cancer, Harvey had developed a fatalistic streak, convinced he would die young. He detected a tiny growth on his arm a few years before, a self-diagnosed malignant sarcoma, and immediately began putting his business in order, preparing for a swift end. When I took him to the dermatologist, who essentially told him what I had been saying—that it was a sebaceous cyst—Harvey wanted to know how long it had been since the dermatologist had finished his training. I regularly made fun of Mr. Hypochondriac. But this node, it was a different story. It didn’t feel right to me, even to touch.
I called our internist at Rush University and made an appointment to see him later that afternoon. All of us agreed that in the absence of any infection, instead of a course of antibiotics and another few weeks of anxious watching and waiting, we should just take the lymph node out and be done with it. For the first time, I saw Harvey demur. It was as if he did not want to know. Convinced he was fretting over nothing, I insisted on urgent action. He finally agreed when I said he was going to make my life miserable until we knew. Still, he went into the OR reluctantly. I scrubbed and went in with him on March 4, 1998. As soon as the neck was sliced open, I knew for certain that it was not an infection. Behind the superficial growth was a chain of pea-sized lymph nodes dotting the lymphatics with irregular regularity, up and down the neck, creeping their way behind the supraclavicular area and disappearing into the chest. The surgeon, Dr. William Panje, looked concerned but maintained a stoic silence. He carefully dissected out the largest node and closed the wound with aseptic efficiency.
I sat with Harvey in the recovery room. As I called the babysitter to make sure Sheherzad was picked up from school, a nurse came over and whispered that I was wanted on the phone. It was Jerry Loew, the best hematopathologist at Rush, and by now a dear friend. “Azra, I think you should come look at this.”
A while later, he ushered me into the frozen-section lab. One look at the slide in Jerry’s double-headed microscope evaporated any hopeful delusions that it was an infection. There were sheets of monotonous, small, round lymphocytes, looking deceptively innocent but announcing their malignant nature by their sheer number, constricting sinuses, distorting the nodal architecture, effacing crowded follicles. Jerry looked over the microscope. “I’m sorry. Not sure yet about the exact type, but it does not look good. Lymphoma. Let us wait for the permanent sections.”
Standing alone in the sanitized hallway of the pathology lab, unconsciously registering the sharp, pungent smell of formalin, I made two calls. First, to Steve Rosen, the best oncologist I knew in Chicago, and one of our closest friends. He was the director of the Northwestern University Cancer Center. The second call was to my sister Atiya in Columbia, Maryland. She is a superbly trained pediatric oncologist with the reputation of being the best general clinician in the Raza family. “I think Harvey has c—” I could not pronounce the c-word. That choked-up feeling I experienced in the first few lonely minutes of Harvey’s initial diagnosis would stay with me, off and on, for the next four and a half years. Both wanted to come over immediately. I stopped Atiya. Steve dropped everything he was doing and was by my side within half an hour. I did not want to tell Harvey what we suspected just yet on the off chance that the permanent biopsy sections, due out in a week, would show that this was reactive hyperplasia after all. Harvey did not ask. Steve agreed with me, but he came in to say hello to Harvey anyway. “I’m not here for you. Azra was nervous, so I came over to hold her hand,” he said, putting his arm around me.
Harvey relaxed over the next few days. Removal of the physical lump brought a measure of psychic relief. A cloud lifted. No more obsessive fingering of the neck, gauging the size of the node, its shape, level of tenderness. I was anxious, but Harvey looked so good that I allowed myself to slip into a hopeful fog. Anyway, there was not much else to do but wait.
A week passed by, and it was time for the appointment with the internist, who would give us the final pathology report. If Harvey was anxious, he did not show it. Instead, he did his best to make me relax.
Of course, the one thing we are trained as doctors to avoid at all costs had to happen to a doctor who is suddenly a patient. Harvey found out his diagnosis of cancer in the worst possible manner. In the corridor. On our way to the internist’s office, we exited the elevator, coming face-to-face with the chief of pathology, who, assuming that of course we already knew, blurted out, “Harvey, I am so sorry about your lymphoma. Please know we are here to help you in any way possible.” He refused to see the internist after that. We returned to Harvey’s office and called Jerry Loew. Jerry confirmed the diagnosis. It was a chronic lymphocytic leukemia, follicular lymphoma. After I hung up, Harvey said, “Let’s go for a drive.” We sat
in the car by Lake Michigan for a long time, silently holding hands. We were both oncologists. We knew pretty much what was coming. He finally spoke. “This I can take. I’m glad it’s me and not you or Sheherzad. That I could not handle.”
Even in our sleep, pain which cannot forget
falls drop by drop upon the heart
until, in our own despair, against our will,
comes wisdom through the awful grace of God.
—AESCHYLUS
After Harvey was diagnosed with cancer, we prepared ourselves for all sorts of eventualities, but even we were taken aback by the unexpected intensity and recurrent nature of the pain, appearing in wholly unpredictable places and forms. Masquerading as arthritis one day and a neuralgia the next, it showed up as venous thrombosis, assaulted nerves, skin and bones, digits and muscles, mucous membranes, glands, organs, and limbs in a series of reckless tsunamis. No tissue was spared. These were all manifestations of the collateral damage resulting from a twisted, misguided tug-of-war between the body’s confused immune system and the lymphoma, and all were accompanied by intense pain.
After several months of scorching and blistering its way through practically a quarter of Harvey’s visible joints in a sequential, syncretic, episodic wrecking storm, the lymphoma finally seemed to reach a pact of coexistence with the immune system in his ravaged body. Harvey started thalidomide, and four weeks later, the symptoms had vanished as suddenly as they had appeared. The agonizing combat seemed spent. By that time, Harvey had lost more than twenty pounds in the short space of three months. The skin on his arms, gorgeously toned just months earlier, sagged. He looked gaunt, emaciated. An unhealthy pallor covered his entire body. Cancer became visible, announcing its residence through the unmistakable wasting, a sudden and dramatic loss of fat and muscles. His exterior began to reflect the deadly mayhem of the unstable interior. He felt drained as never before.
After great pain, a formal feeling comes—
The Nerves sit ceremonious, like Tombs—
The stiff Heart questions was it He, that bore,
And Yesterday, or Centuries before?
—EMILY DICKINSON
It took him months to regain a fraction of his old vigor and humor, but we both knew the calm was temporary. He was sitting on a time bomb. We said little about the subject, but both of us were helplessly suspended in a state of harrowing apprehension, not knowing when and how the lymphoma would rear its ugly head, what organ was the next target of its indiscriminating malice.
In June 2000, I went to Atlanta for a four-day medical conference. On the third morning, I made my presentation. Shortly thereafter, I received a call from our program’s administrative executive and beloved friend, Lakshmi. She sounded grim.
“Dr. Raza, no need to worry, but now that your talk is done, perhaps you can return earlier? No, no, Sheherzad is fine, and it is nothing serious with Dr. Preisler, but he is developing a rash and not feeling great.”
I flew back the same afternoon, landing in Chicago around 6:30 p.m. Heading home from O’Hare, I stopped to order takeout from Maggiano’s, Harvey’s favorite Italian restaurant in the city. Armed with breaded veal cutlet and his favorite pasta, I walked in to find Harvey lying in the family room watching The Sopranos. Breathing a sigh of relief, I walked over and was horrified to see that half of his face was covered with red, papular lesions, some of which were already evolving into vesicles and bullae.
“Where else do you have the rash?” I asked.
He stuck his tongue out. This is one time when I almost fainted. Half the tongue was studded with the angriest-looking raised pustular rash; some lesions weeping and oozing pale, thick secretions, others bleeding. The distribution of the rash—its restriction to one side of the face and tongue—left no doubt that this was herpes zoster or shingles, one of the most painful conditions imaginable. Even I had never seen shingles of the tongue before. Harvey’s equanimity in the face of such punishing displays of cancer’s malevolence was decidedly saintly. He looked at the Maggiano’s carryout bag and managed a smile. “Thanks, Az. Guess I will be giving this a miss tonight. I know you will want Pakistani food after being away for three days. Better send this down to the doorman. Tony loves Maggiano’s.”
Harvey had started antiviral therapy two days prior, but at that point, things seemed to be worsening instead of improving. The pain and discomfort was frightful. The next morning brought another terrifying development. It was Sunday. I had barely slept and finally, giving up at 4:00 a.m., had come out to do some work on my laptop in the family room. Around 6:30 a.m., Harvey emerged from the bedroom. He did not look like Harvey. He had developed facial paralysis. The asymmetry in those early hours of onset was dramatic. One half of his face drooped, sagging helplessly. He could not completely close his mouth, and saliva dripped from the side. The paralyzed cheek flapped, out of sync, as he tried to speak. The facial lesions were coalescing, the tongue simply unbearable to look at. This man, who was strikingly handsome, slumped into the chair, unable to blink, smarting from itching in the dried-up, perpetually open paralyzed eye, slurring his speech, drooling, twitching, wincing as the lacerating pain sliced and throbbed its way through his palate and tongue, singed his ears, scorched his breath. Master of supreme meiosis that he was, Harvey managed a single sentence. “I guess I’m a mess.”
They say, the tongues of dying men
Enforce attention, like deep harmony;
Where words are scarce, they’re seldom spent in vain;
For they breathe truth, that breathe their words in pain.
—SHAKESPEARE, RICHARD II, ACT 2, SCENE 1
As the day wore on, I obsessively inspected Harvey’s torso and limbs, and by evening, I had located a few new lesions on his back. He now had disseminated shingles, something seen in individuals with a compromised, suppressed, weakened, malfunctioning immune system. It can be deadly. I panicked and called up Harvey’s oncologist, our good friend Steve Rosen. We agreed that Harvey should be admitted. Harvey refused. Steve came over to the house, reviewed the long list of medications, added some, subtracted a few, and held my hand. By the time he left, I felt reassured, thanks to his calm and confident bedside manner. The next morning brought a fresh crop of lesions to various areas of Harvey’s body, but as I decompensated, Harvey maintained his calm. Days progressed at an agonizingly slow pace into weeks. Round-the-clock pain medications helped, and eventually, he was able to tolerate a semiliquid diet. He could not shave from that point on. The facial lesions continued to seep, which made him very uncomfortable. Over the ensuing weeks, he gradually improved, but until he died almost two years later, the facial asymmetry remained a particularly disagreeable, disfiguring, visible reminder of cancer’s vengeful ferocity.
If one is to get cancer, a diagnosis of lymphoma usually brings a modicum of relief since it is treatable with a decent chance of cure. In fact, Harvey did quite well for a while. In June 1998, after treatment with Rituxan, we harvested stem cells from his blood to save, in case we decided on an autologous transplant at some point. I think it was more for our psychological benefit than of any practical value, but the transplant team went along with our request. By 1999, things started going downhill quite rapidly. He developed deep-vein thrombosis, asthma, the migratory polyarthritis, night sweats, infiltration of subcutaneous tissues with the lymphoma cells. I was particularly shocked by the en masse migration of lymphoma cells from one compartment to another, waking up one morning to find his spleen had enlarged and another to discover lumps in the neck and armpits.
He started thalidomide and responded, but after a few months, he developed extremely uncomfortable and painful symptoms of peripheral neuropathy. He was switched to Revlimid, and he experienced much relief for a while, but then that drug proved quite toxic for the marrow. When his platelet count dipped into the teens, we had to abandon this approach. He was eventually started on chemotherapy. I don’t know how much effect all these treatments had on the lymphoma, but they essentially destroye
d Harvey’s immune system. He became exceedingly prone to repeated infections, landing him in the hospital frequently. Were he alive today, Harvey could have benefited from the drug ibrutinib, which is proving to be fantastically successful in several types of lymphoid cancers.
It is still uncertain whether the lymphoma came first and affected the immune system or a defect in the immune system enabled the lymphoma to appear. Harvey suspected the latter because he had already suffered from testicular cancer before and the lymphoma was a second primary cancer, rather than a recurrence or derivative of the first. And then, of course, there is always the question of the endless treatments he received, which played havoc with the immune system in unknown, destructive, suppressive ways. Whatever the case, the failure of his immune system caused sepsis after sepsis until the treating physicians sat me and his adult children down and advised hospice care, gently suggesting that I not rush him to the ER when his next infection appeared. We were to let nature take its course now. Harvey had been suffering from a tuberculous meningitis at that point and unable to make an informed decision by himself.
It was a relief to bring him home, both for him and for all of us. He recovered from the meningitis eventually, regained his full intellectual vigor, and, while on hospice care at home, conducted regular lab meetings with his scientific colleagues. I sent Mark, Harvey’s son, to fetch Harvey’s parents from Florida. Lenny and Estelle, both in their nineties, stayed by Harvey’s side the entire time he was on hospice care at home, providing their love and care until the last moments of his life. One of the hardest things for me in those days was to face his mother. I always took a few moments to compose myself before I emerged from our room, because I knew how anxiously Estelle would scrutinize my face, scan my body language. Harvey was their pride and joy.
