by Lissa Warren
Though he was in almost constant pain, Dad took a bit more convincing. He wasn’t up for another surgery, another hospital stay. But then the doctor said the magic word: outpatient. Dad could be in and out the same day. In less than a week, the surgeon got clearance from Dad’s cardiologist (who insisted on a stress test first, which, miraculously, Dad passed), and the procedure was scheduled.
I took the day of Dad’s back surgery off of work. It was my job to change Ting’s water and put down extra food; to do the driving and to bring Dad’s various pills; to hold his glasses for him while he was in surgery and to keep track of his watch. We left the house around seven a.m., and by nine a.m. he was prepped and on his way to the OR. He was calm—much calmer than he’d been for his bypass—so Mom and I were calmer, too. After they wheeled him off to the OR, we went and grabbed tea in the hospital cafeteria, then camped out in the waiting area.
I did my best not to think back to Dad’s bypass, but the situations were similar enough that I couldn’t help it. The scary memories resurfaced—from the catheter they dropped through the side of his neck so they could monitor his blood pressure during surgery, to his sternum being cut in half and spread open so they could gain access to his heart; from the veins they harvested from his leg for the grafts, to how swollen he looked from all the IV fluids and blood products when we were finally escorted to the recovery room to see him; and finally, from the Streptokinase, a bacterial product they gave him through his IV to eat away at the postoperative adhesions that had formed in his heart, to how hard Mom and I pushed the doctors to have his breathing tube removed as soon as possible, while he was still kind of twilighty from the anesthesia, so that he wouldn’t remember the feeling of being on a ventilator. I remembered Dad having hiccups nonstop for three full days after his bypass because his diaphragm had been irritated during surgery. It sounds funny, but it wasn’t; hiccups hurt when your breastbone is held together with nothing but wire and you have half a foot of staples running down the middle of your chest.
Though my mind was working overtime to make it just as bad, this surgery was much less frightening than Dad’s bypass had been. It was also considerably shorter. In a procedure that lasted a little over an hour, Dad’s back pain went away for good. After a brief stay in Recovery and a final once-over by the surgeon, we got to bring Dad home.
I drove carefully, avoiding all the potholes on Pond Street. I took the speed bumps on Stillwater Circle extra slow. After pulling in the garage, I eased Dad out of the front seat, held him by the elbow while he walked upstairs to the bedroom, and helped him lower himself into his rocker. I tucked our fluffiest pillow behind his back and handed him the remote control and a giant bowl of vanilla-bean ice cream with chocolate sauce that Mom had scooped for him (he’d earned it), and left him to watch the Yankees game in comfort for the first time in over a year.
Except for a plum-colored bruise on his lower back and about an inch of stitches, you’d never suspect he’d just had surgery. His eyes were bright. He had energy. His appetite was back. He felt good. Mom offered him a post-op pain pill that the doctor had prescribed, and he waved it off with a quick “I don’t need that crap.”
Later that night, he picked Ting up and danced around the bedroom with her, cheek to cheek, while singing “Unchained Melody.” He was finally happy again. We all were.
Chapter Ten
December 18, 2008
If human lives be,
for their very brevity, sweet,
then beast lives are sweeter still.
—Isobelle Carmody
In the fall of 2008, not long after his back surgery, my father was diagnosed with myeloproliferative disease, a disorder in which excess cells are produced in the bone marrow. Mom and I researched it and learned that, in a matter of years—or months, if we weren’t lucky—it would likely turn into leukemia. Dad knew the name of what he had and that it was serious, but he didn’t know how it progresses. Mom and I didn’t tell him. The doctors didn’t tell him. He didn’t know how to use Google, so he didn’t know that the disease is sometimes referred to as “pre-leukemia.” My father was a worrier by nature, and Mom and I were determined to do the worrying for him.
Weeks after his diagnosis, Dad started having a tingling sensation in his left arm. It was a symptom he knew well, and a feeling he hated. We took him to the emergency room of a nearby hospital, and they admitted him. Because his condition seemed so unstable, Mom and I slept in his room, in reclining chairs that the nurses wheeled in for us. He had tried to convince us to go home, but something told us not to leave him.
At some point in the middle of the night, Dad called out to us that he was feeling worse. We could see that he was sweating profusely—more than just the night sweats he’d been having lately, a telltale sign of myeloproliferative disease. Mom rang the call button for the nurse, who came in and took his pulse, his blood pressure, and his temperature. His temperature was a bit elevated, but nothing else seemed out of whack to her. She gave him two aspirin, and told him to try to go back to sleep.
A half-hour passed, and he still didn’t feel right. We saw that he was becoming increasingly agitated, and it was starting to worry us deeply. Mom gestured to a poster on the wall with a twenty-four-hour number patients or their family members could call if they felt they needed more care than they were getting—a number that would summon some sort of special support team.
“Should I dial it?” I whispered.
“Go to the nurses’ station and threaten to,” said Mom.
So that’s what I did and, because by that point I was really scared, I was horribly rude. I lobbed phrases like “substandard care” and “inadequate action.” I asked for supervisor names. Out of a genuine desire to help my dad, or a genuine desire to get me out of her hair, one of the nurses picked up the phone and dialed the hotline number herself.
To the hospital’s credit, a mere five minutes later a three-person support team was in Dad’s room hooking him up to an EKG. They said it didn’t show anything out of the ordinary, and by the time they’d removed the leads from Dad’s chest, he said he was feeling better. Shortly after they left, he fell asleep. Shortly after he did, Mom did.
I lay awake in the half-light of the hospital room the rest of the night, thinking that we had many more nights like this ahead of us—worse ones, probably. Probably much worse. There was no self-pity, just fear for my father and a sense of dread—and a helplessness I wasn’t used to. My parents had gone out of their way to raise me to believe there was nothing I couldn’t do, but I felt powerless to help my father. I had grown up thinking my way out of every bad situation, but I didn’t know how to think his way out of cancer. All Mom and I could do was advocate for him, and surround him with good doctors.
I also thought about being an only child that night. Growing up, it was lovely. I don’t recall ever feeling lonely—I had plenty of friends to play with, and Cinnamon, and Oregano. And Nonnie and Grampa too, of course. And Mom and Dad, who lavished me with attention. And I had my imagination to keep me company—a general store beneath the Ping-Pong table, full of rinsed-out yogurt containers, empty graham-cracker boxes, Styrofoam egg cartons, and Monopoly money for making change. Plus I had books—lots of books—to be with. Laura Ingalls Wilder and Anne of Green Gables were my friends. I read the whole Trixie Belden series—thirty-nine books—in a single summer.
But in the hospital that night, for the first time in my life, I wished I had a brother or sister—someone to stay with Mom and Dad while I went to fetch a nurse, or even just a cup of tea; someone to help me interpret the notes on the chart that hung on the wall by Dad’s bed. Someone to tell me it would be all right. Maybe a husband could do these things, but I didn’t have one handy.
It hit me that night that someday both Mom and Dad would be gone and that, when they were, I wouldn’t have a family. That no one would remember “raccoon theater”—how we used to scatter marshmallows on the back lawn of our house in Ohio so that, after dark,
we could turn off the inside lights, turn on the outside ones, and settle near the window to watch the raccoons enjoy their treat. That no one would remember how, at 11:11 every night, whichever one of us noticed it first would cry out “Happy our time!” simply because my father had designated it as such. That no one would remember the trip to Greers Ferry Lake where Dad dislocated his shoulder trying to get onto a raft, but where we found great barbecue afterward—pulled pork sandwiches with that vinegary sauce they have in Arkansas that Dad said was worth a little pain. That no one would remember the night I brought Ting home, and how I slept on the floor of my parents’ room to help her transition from me to them. That no one would remember any of it. No one, that is, except me.
But all of these were selfish thoughts. I wanted—and needed—to focus on Dad.
The next morning, Dad’s hematologist/oncologist came by. He wanted to do a bone marrow aspiration to get a better sense of how Dad’s myeloproliferative disease was progressing. I had always thought such procedures were done in an operating room—too many episodes of Grey’s Anatomy or House, I suppose—but he said he could do it right there, and summoned a nurse to help him. When she arrived with a tray of instruments draped in hospital-blue, Mom and I went out into the hall to wait. Five minutes later we heard Dad scream in pain. It was guttural, and cut us. Mom grabbed my arm as if to steady herself.
Seconds later, the door to his room opened and the nurse slipped out. She inched away from the room holding on to the wall, mumbling something about the size of the needle and feeling like she might faint. I ran for the nurses’ station to get someone else to help Dad’s doctor while Mom walked the nurse to the nurses’ lounge.
A little while later the doctor came out. He pulled a small vial from the pocket of his lab coat and held it up to the light. It was filled with fluid, and what I think was a little piece of bone. “We’ll send it to the lab,” he said, “but if it were leukemia, it’d probably be cloudier. This is actually pretty clear.” Encouraged that the myeloproliferative disease might at least be progressing slowly, Mom and I took a deep breath, gathered ourselves, and went back into Dad’s room. He already had the TV on and was searching for a ball game. We said nothing about having heard him cry out or how incredibly brave he’d been, and he said nothing about how much the procedure had hurt him.
Before releasing him, Dad’s doctors consulted and agreed that his angina was likely tied to the myeloproliferative disease. He was given a blood transfusion, and it seemed to do the trick; the angina lifted, and we got to take him home. Looking back, I suspect my father had a minor heart attack that night.
A few days later, on my mother’s sixty-ninth birthday, my father wrote a letter to his cardiologist:
11/25/08
Dear Dr. C.,
Just to bring you up-to-date: After seeing you last Thursday I had my blood taken as you requested upstairs. I then went home and basically did nothing all day. The angina pain continued, and nitro abated it.
By Friday the rapidity of the left forearm attacks continued, and I finally went to the ER in the late afternoon, on Dr. Meow’s advice.
My HCT was down to 24.5, and it was decided to start giving me a blood transfusion. Dr. McKurgi (can’t spell his name) stopped in, and had a lot to do with the blood step-up. I wound up having four liters (pints?), and my HCT got up to 38.5. I was finally released on Sunday. Once the blood started I had no angina attacks, and started feeling better.
Dr. Sanz-Altamira, my oncologist, did a bone marrow biopsy while I was in the hospital—results pending; will keep you advised.
General consensus: It’s the blood flow caused by the myeloproliferative disorder that is probably causing my problems.
Having the echocardiogram today as scheduled—the saga continues. I await your feedback on the blood work taken upstairs, as well as the echo.
The hopeful,
Jerry Warren
Dr. Meow was, in actuality, Dr. Miao—an Asian name—but my father heard it as any cat-parent would.
Several things about this letter were telling. By referring to Dr. Sanz-Altamira as his “oncologist” rather than his “hematologist,” Dad showed more awareness of his illness than we realized. The careful tracking of his hematocrit numbers proved that he was still capable of being an active participant in his own care. And his salutation—“The hopeful, Jerry Warren”—showed how much he wanted to live. It’s that last bit that still gets me.
About three weeks later, on the evening of December 17, Mom called me at work to tell me Dad was having angina again, and that she was taking him to the hospital. I grabbed my coat and my laptop and headed right for the car, realizing halfway there that I’d left my snow boots beneath my desk, but not wanting to take the time to go back for them.
Driving north I let my thoughts get the best of me. Worst-case scenarios flooded my mind. I kept the radio off in case my cell phone rang, and still glanced down at it every few minutes just to make sure I hadn’t somehow missed a call when driving through one of the many dead zones along Route 93.
When I got to the emergency room forty-five minutes later, the tingling sensation in Dad’s left arm was more severe than it had been when Mom first called me, and more severe than it had been during his previous hospital visit. Though he had walked in under his own power, it soon became clear that something was seriously wrong. The doctors, in the midst of a shift change, and quick to blame things on his myeloproliferative disease, didn’t catch what was, in retrospect, blatantly obvious. One of them seemed unsure of how to work the EKG machine. Another one—completely lacking anything remotely resembling a bedside manner—flew into the room and threw on the lights that Mom had dimmed so Dad could try to get some rest, and announced that they could try to give Dad some sort of clot-busting medicine, but that if there wasn’t a clot, it could kill him.
As the evening wore on, no plan of action was put in place. No decisions were made on my father’s behalf by anyone in a white coat, and Mom and I couldn’t even tell which doctor was supposed to be making them. At one point, a nurse told him dismissively that he was “just having unstable angina” and would “have to learn to live with it.”
Eventually the tingling crept into Dad’s jaw, and from that point on the night is something of a blur. I remember running out to the nurses’ station—literally running—to tell them his new symptom, half expecting them to hit some sort of giant red button that would immediately summon every doctor within a ten-mile radius. The nurse said that he was going to be admitted, and that someone would be right in to take him upstairs to intensive care, because the cardiac care unit was full.
Time elapsed; I couldn’t say how much. Eventually, a tiny nurse came in to hook him up to a portable heart monitor. She explained that there was a ramp they’d have to go up, and that she’d need a running start for it. I remember me and Mom running along after the gurney, not wanting to leave Dad alone for a minute, not trusting that he was in capable hands. I remember Dad holding on to the gurney railings for dear life as it bounced its way up the impossibly long ramp with its impossibly steep angle for anything on wheels.
At the top of the ramp we boarded an elevator, and when it let us off on the intensive care floor, the nurse wheeled him into the unit, telling us to go sit in the waiting room while she got him settled in. For some reason I will never understand, Mom and I obeyed. Minutes later, a code blue was called, and we watched doctor after doctor run by. In ignorance or deep denial, we didn’t put two and two together. Eventually, a woman in a white coat came out and told us that my father had had a massive coronary—right there in a hospital, with a state-of-the-art cardiac catheterization unit that they never used to try to save him.
My father hung on through the night. He regained consciousness briefly—long enough to squeeze my hand when I asked him if he could. They intubated him so that he could breathe, and they sedated him. They put salve in his eyes to keep them moist, because they were still half open. Mom pulled ChapStick from her p
urse, and smoothed it across his lips as best she could, taking care to avoid the tube.
Over a period of five or six hours, Dad coded so many times that I lost count. Mom and I stood at the foot of his bed each time, trying to give the doctors room to work, holding on to each other and telling Dad he’d be okay, even though we didn’t think he could hear us—even though we didn’t think he was going to get through this.
One of the nurses asked us if there was a family member we’d like to call.
“We’re it,” I snapped. “This is our family.”
The nice nurse backed away.
Toward morning, the cardiologist on call—the same one who’d placed Dad’s stent years earlier—came by. I asked him if we should look into MedFlighting Dad to a hospital in Boston—Massachusetts General, maybe. He said that he’d considered that, but didn’t think Dad was stable enough to make it. Then he asked us if we believed in God. I told him we believed in people, though in my heart I knew that the ER doctors had failed my father, and that by allowing them to fail him, Mom and I had failed him too.
My father died shortly after seven a.m. on a cold and appallingly sunny Thursday. He was still warm when we kissed him good-bye.
Chapter Eleven
The Sock Drawer
“Name the different kinds of people,” said Miss Lupescu. “Now.”
