I chide him for his impatience—and selfishness. I see the other side. As editor of a large newspaper, I know all too well that one angry caller may in fact be just one of two, or ten, or fifty—or even a thousand callers, each with the same issue. Each believing himself or herself unique.
“I don’t think it’s unreasonable to—”
Terence cuts me off.
“Who designed this system? I want the name. Which person? I want to know whose fault this is.”
He wants someone to call. Someone to talk to. Someone to throttle.
“Terence!” I am exasperated. “There isn’t any one person; it’s a system.”
That enrages him all the more.
“That’s what Kafka writes about,” he yells. “Everyone’s evading, ducking and weaving. There’s no one to blame. No one takes responsibility. Everyone is JUST DOING HIS JOB.”
His voice drips with sarcasm, his tone coils upward.
Now I see what he means. I never do find anyone to blame. Each individual person I find is completely reasonable and caring—often going far beyond what he or she needs to do. But today, looking back over those weeks, there is no question in my mind: This system isn’t designed for me and Terence. It is designed for them. I spend days, hours, punching in “1,” sitting on hold. Waiting for a callback. Scrolling websites, reading biographies—trying to figure out who the doctors are we are dealing with, whom we should be dealing with, and how we get through to them.
As October draws to an end, the leaves on the redbud in our back courtyard yellow and drop. The school year unfolds with its rhythms of permission slips, homework checks, and music practices. The side effects of Terence’s treatments begin to mark the edges of our world. Yet despite his discomfort, our life is still more or less normal. I still get up every morning and go to work at Bloomberg. He still takes the kids to school and picks me up from the train. He is still playing the violin and the piano and practicing his Arabic. He has even started a new project, a screenplay about a murder in Beijing.
Yet his cough is not abating. We try Robitussin. We try Mucinex. I brew him my old favorite: lemon, honey, and bourbon. He coughs, and coughs, and coughs. Dr. Flaherty prescribes something stronger, a cough syrup with codeine. Terence coughs and coughs. We try a purple inhaler. Another prescription for something we call “pearls”—Tessalon Perle, I later learn is the real name. Benzonatate. It’s used for people with emphysema, asthma. Serious stuff. It is supposed to hinder the lung reflex that makes you want to cough. It doesn’t. He coughs and coughs and coughs and coughs. I look at the latest prescription, something Terence says everyone promises will definitely help. It’s OxyContin, an opiate.
Woody Boyd comes to visit. Terence sits in the car with him. He blows his cornet and coughs and coughs and coughs.
Food tastes funny to Terence. Another side effect, I guess. His weight is dropping. He’s hardly skeletal, but his clothes are starting to look baggy. Yet we’re still keeping close to a normal routine. He even still shops for groceries. He uses one of those little red electric three-wheel carts with baskets that they keep for old folks to use at Superfresh. The kids and I tease him. He tries to run us down.
He’s exhausted all the time. It’s no wonder, I think. The constant cough alone is surely enough to tire him out. The pain must be wearing. OxyContin is the twentieth-century opium. No wonder he is tired.
I troll the Internet looking for salves and ointments for the skin rashes and lesions that are beginning to cause him so much pain. His biggest complaint, though, is his gut. The medicine, or something, is making him so sick that he is now miserable all the time. Clearly his intestinal surgery from seven years ago is making the side effects worse. I want someone to figure out if there is something else we can do to help him.
And so I find myself in a giant game of hot potato. For the first time since Terence’s illness begins I am short-tempered and demanding. He’s being treated for cancer. That’s Dr. Flaherty’s job. How about the tumor that is making him cough? That will be seen by another specialist, Dr. Ali Musani. When can Dr. Musani see us? We don’t know. Dr. Flaherty is working behind the scenes. Is Terence’s earlier intestinal problem making the side effects worse? I want to know. I call the doctor who treated him earlier for that condition. He is a surgeon. The after-effects are not his business, I learn. Besides, his next available free spot is in two months, his receptionist informs me. I try to explain my concern. Can’t we even talk?
Long silence.
December 7?
He’s sick NOW, goddammit. I want to see someone NOW.
What about the skin lesions that are tormenting him? We need to see a palliative care specialist. Or a dermatologist. Each time, I begin the conversation anew with someone on the phone. Each time I hear the long pause as someone consults the appointment book for new patients. February? one suggests. Explain the problem to me and I’ll have the nurse call you back. Who is referring you to this office? Are you a patient of the doctor’s?
I know that throughout Terence’s illness his doctors have been communicating with one another behind the scenes. Surely this maze makes more sense to them than it does to me. When I look at the records, I see the professionally dictated, precise notes they sent one another. But right now I want the system to make sense to ME. I want someone to talk to ME. Terence is hurting and I want it to stop. Yet his entire digestive system—from his mouth to his tail—seems to be cut up into separate duchies, each ruled by a separate monarch. The skin? His throat? His lungs? His cancer? All different lands, different kingdoms. And I lack the keys to these kingdoms. They are remote, inaccessible, cut off from me by schedulers and voice mail. I cannot link them together. I cannot even reach them.
Perhaps my quest is misguided. Perhaps none of these people can help after all. Perhaps we are already doing the best we can. Perhaps I should relax and let the professionals do their work. But it feels as if I am the only person seeing Terence. Terence Bryan Foley. A whole person who is hurting, not just a single piece of his body that needs attention. I am frustrated and angry. I want someone to talk to me. NOW.
In the last week of October, Terence calls me at work.
“I can’t pick up Georgia at school,” he says. “I can’t get out of the chair.”
I rush home. I am two hours away. I am on my phone the entire trip, cursing the tunnels that cut me off. A friend’s mother picks up Georgia. I talk to Terence all the way home.
It is clear I cannot be that far away anymore. I begin working from the guest room. Professionally, the world around us is fracturing. A financial crisis is unfolding. Cellphone in hand, I massage his back and rub cream into his painful skin sores. In my ear I hear chatter about LIBOR and special purpose vehicles and bad banks and good banks, and Hank Paulson and Ben Bernanke and Alt-A mortgages and bad collateral and write-offs. While Terence sleeps I edit stories.
Why do I go into this overdrive? Why don’t I just stop? I keep going—with work, with the kids’ school, with caring for him—because I don’t see this as the end. I see this as our new life. I may be crazy enough to think he will get better; I am not crazy enough to think it will be quick. I am establishing the new rhythms of what I believe will be a way we will have to live for a long time to come.
On Halloween night for the first time ever we leave the candy on the doorstep. His Dracula costume stays wrapped in the basement. Finally we get an appointment with Dr. Musani. Now things will improve, I think. Dr. Musani will laser out the spot. The coughing will stop. Terence will begin to get some sleep. He will stop taking the powerful medications. He will begin to get stronger. The Avastin will work its magic. And life as we knew it will resume.
On Thursday, November 8, 2007, I drive Terence across town to the University of Pennsylvania hospital for our 10:00 a.m. appointment with Dr. Musani. Terence is feeling very weak. The long bridge across the roadway from the parking garage to the offices is impossible for him to negotiate. For the first time, I see the wheelcha
irs by the elevators in the garage and realize what they are for. I push him into a waiting room. A nurse does the usual blood pressure and pulse thing and sits him on an examining table.
Terence is exhausted. So worn out he cannot sit upright. He twists and squirms on the table, tries to make himself comfortable, tries to lie down. I pull the table extension out. He can’t get comfortable. I help him down from the table. He lies down right there on the examining room floor. I bundle his jacket under his head and cover him with my coat.
Dr. Musani enters the room. He is a specialist, an interventional pulmonologist. I am not sure what that means, but Dr. Flaherty tells us that if anyone can remove the lump in Terence’s throat it’s Dr. Musani. We have never met Dr. Musani before. He seems shy. Seeing his patient lying on the floor, he is also clearly alarmed. This is obviously not what he expected. If Terence is so ill he can’t sit up, he belongs in the hospital, not at home. As Dr. Musani leaves to begin the paperwork, he turns to me.
“Have you considered hospice?” he says.
I brush him off. Hospice is for those who are expected to live less than six months. That’s not Terence. That’s not us.
“We’re waiting for the Avastin to kick in,” I explain.
Later, Dr. Musani will tell Dr. Flaherty that there is nothing he can do.
We wait in Dr. Musani’s examining room for what seems like forever. Finally an aide arrives with a wheelchair, and at 2:24 p.m. Terence is admitted to Rhoads 3, the advanced medical oncology unit.
23
Terence spends the next four days in the University of Pennsylvania hospital.
A battle rages around him, and me.
It is a silent battle. A battle where the opposing sides never face each other and take aim. It is a battle fought largely through me. It is a battle I see clearly only in retrospect.
On one side are Dr. Flaherty and me. On the other, the doctors and nurses and—for all I know—the orderlies, assistants, and the nice ladies who bring him lunch. The field of battle: Terence.
Is Terence dying or not?
Subtly, I feel the doctors’ motivations part. Are we plumping Terence back up to resume the fight? Or simply easing the decline of a dying man heading to the end? I can feel the question hover in the air around me.
Dr. Flaherty and I both believe that there is life ahead. Both of us believe—and I think Terence does too—that we can tame Terence’s illness, that victory is possible. In retrospect, and in closely reading the medical records, I can see that everyone on the hospital staff thinks we are crazy. They see a man with his foot firmly planted on the road to the end.
But to me, their actions speak louder than the words they never say. If Terence is dying, then why is this medical machine kicking into such high gear? I know why Dr. Flaherty and I are doing what we do. We believe we are going to save him. But if the folks in the hospital believe he is dying—and quickly—then why are they spending so much time, energy, and money to save him?
Today, three and a half years later, I review the medical records—169 pages of them from those four days. Just over 40 pages a day. My memory conjures up these four days as a whirlwind of people, faces, and procedures. People come and go. They politely introduce themselves, explain who they are. I’ve never seen any of them before. I just as promptly forget their names and become confused.
Who are you again? What do you do? What is your role here? I struggle with the names. I struggle with their functions. I struggle to figure out who’s in charge. Susan Domchek? She’s the attending. Does that mean she’s the boss? I keep asking to meet her. I’m sure I do meet her at some point, but I have no clear recollection. She signs a lot of the documents. She’s important in the paperwork but not in our real lives, it appears. So if she’s not the boss, who is? Elliot Jerud. He’s signing a lot of things too. Does that mean he’s the boss? Are you both the boss? Which one of you is in charge here? And how do I know? Who is ordering all these tests? These scans? Are you guys all talking to Dr. Flaherty? To Dr. Musani? To one another? To me?
The doctors all pop in and out of the room at unexpected times. I am sure their visit schedule works with their own lives and work. Not with mine, though. I go home at night to sleep; there is no one else to care for Georgia and get her to school. I drop her off and come straight to the hospital. By the time I arrive a little after eight, someone important has already been by with some medical message that a drowsy and irritable Terence tries to pass on to me.
And a lot of things are going on. He has his blood drawn, eight times. Urine collected, at least twice that I can see. There is a CAT scan of his chest and an MRI of his brain. A physical therapist drops by several times. A nutritionist talks about cancer fatigue, decompensation, and calorie needs. She orders little containers of high-protein drinks to be delivered with his trays; on the way in and out of the hospital, I stop at Potbelly for takeout vanilla shakes to mix with the prescribed protein. Terence refuses to drink them. The protein drinks, he says, only spoil the flavor of the shakes.
And there are drugs. Lots and lots and lots of drugs. Most of them I know about. Some of them I will learn about only by reading the records years later.
Three years after Terence’s death, an acquaintance, a hospice chaplain, tells me of hospice workers’ black humor about this phenomenon, about how the medical machine keeps on ordering tests and procedures on dying patients. She tells a dark little joke: An orderly goes to the hospital morgue to retrieve a body. It’s not there. Instead, he finds a note: Gone to X-ray, it reads.
By day two, after some intravenous fluid and a glucose drip, Terence is feeling a little better. A brisk, cheerful nurse enters the room.
“Good morning, Terence!” she chirps.
“Do I know you?” he growls. “Have we been introduced?”
She is puzzled.
“I don’t remember giving you permission to call me by my first name,” he says. “The name is MISTER Foley.”
Later in the day a doctor stops by. Is it a resident? An intern practicing taking histories? An actual M.D.? I have no idea. The visits all start out the same.
“I’d like to ask you a few questions …”
Terence is snappish. He’s been here before.
“I am STILL Terence B. Foley,” he says. “I am STILL sixty-seven years old. I STILL was diagnosed with kidney cancer in 2001. Don’t you guys ever talk to each other?”
I understand his frustration.
Over and over again since his diagnosis, we have told the same story to different people. Sometimes they are paying close attention. Sometimes they are going through the motions. Who is reading these records? Does the next person read what the last one wrote? Sometimes it appears they do, and sometimes not.
Reading over the records I discover one thing I didn’t know: Terence is diabetic. Over and over again his blood sugar reading is high. Not surprising. He has been overweight for as long as I’ve known him. Perhaps, given his more serious problems, the doctors felt that wasn’t important to tell us, or perhaps it was just a side effect of his many treatments. But I can’t help wondering: Did no one tell us because amid all the specialists we had, no one was in charge of his blood sugar?
Some records have tiny errors in them. Nothing serious. Just the small careless differences that come from passing information among so many people, or from asking Terence or me questions when we were bored or distracted, or just not really paying attention. One morning’s version of the records says his mother died of breast cancer. Later that day, another account is accurate—she died of non-Hodgkin’s lymphoma. One record says she died in 1971. Another, correctly, says 1986.
At least one record is absolutely accurate. Someone takes some kind of social adaptation history. The question: What helps you relieve stress? His answer: Reading. What are the symptoms displayed when stressed? Says Terence: I yell at someone. The answer is carefully recorded in his records.
So how many different people look in on Terence during these fo
ur days in the hospital? Reviewing the records today, I find the names of twenty-seven people, including nine with M.D. after their signatures:
Susan Domchek, M.D.
Elliot Jerud, M.D.
Hanhngo, R.N.
Neil Wimmer, M.D.
Francis Wilson, M.D.
Anila George, R.N.
Helena Yu, M.D.
Tiffany Gehringer, R.N.
Jeffrey Arkles, M.D.
Maureen Hufford, R.N.
Larissa Shelton, R.N.
Heidi Kapustka, R.N.
John Woo, M.D.
Andrew Bowen, M.D.
Nondas Davis, C.N.A.
Warren Gefter, M.D.
Robert Tabak, pastoral care
Audrey Caspar-Clark, L.D.N., R.D.
Ashley Adams, transition manager (social work intern)
Deborah Lowenstein, L.S.W.
Cathleen Ross-Fredericks, discharge manager
Steve Chickman, Praxair
Jonathan McCaffrey, P.T.
Joan Coynern referred for Penn Care at home
Melissa Maynard, R.N.
Wanda Warren, U.C.
Kathy Zegan, R.N.
That clearly isn’t everyone we see, as the lab technicians aren’t included, nor the orderlies who push Terence down for more scans, nor the nice ladies who deliver the meal trays and empty the trash and deliver fresh towels.
It isn’t hard to see why health care takes up 17 percent of our country’s economy. It isn’t hard to see how all these costs add up.
• • •
On November 11, before discharging him, a doctor props one of Terence’s scans on a light board so I can clearly see the blizzard of white spots, hundreds of tumors covering his lungs.
“There’s been substantial progression,” he tells me.
Substantial? I’m alarmed. I’ve just been talking to Dr. Flaherty, and he tells me there has been “some” progression. Which is it?
Without ever breaking professional courtesy or discretion, each manages to convey just how wrong he believes the other to be.
The Cost of Hope Page 18