How to Live With Death

On the recent passing of my father, Alan Speiser.

The first step is disbelief. Of course you knew your dad was going to die someday, just not right now. Never right now. You might be tempted to think this is unfair, but fairness has nothing to do with it. If pancreatic cancer were fair then why are more than half of cases diagnosed at Stage 4?

You learn this factoid while Googling "stage 4 pancreatic cancer" on the train home. The term has been throbbing in your head since your mom called to deliver the news you thought was impossible. You've vowed to never re-enter the conference room at your office where you took her call. Where she told you the oncologist reviewed your father's PET scan and "thinks" the lesions on his liver and pancreas indicate Stage 4 pancreatic cancer. Why did you even go into the office today? Now you stare dumbstruck at the space between your shoes while the guy next to you plays games on his iPad. It starts raining outside, which feels appropriate.

You arrive home and hug your mother. She cries. The sight of your dad makes you cry. Nothing seems different about him, except that someone with a medical background thinks he's dying. You try and compose yourself. Your dad doesn't like the emotion because it makes him feel bad. He pleads for you to "be strong." You sit around with your parents for hours in your childhood home, not quite sure what to do. But being there feels important. Then you go home and cry yourself to sleep. You wake up in the morning and cry some more.

The sadness follows the disbelief pretty quickly. The two can actually coexist. You can feel sad that your father is dying while not entirely believing it's happening. It's easy to think that way when the hospital takes weeks to schedule your dad's tests. How serious can it be if they can't biopsy his pancreas for two weeks? And then another two weeks for his liver? You've been told your father's death is imminent, and then you've been told to sit around and wait. And as you wait, his pain worsens. And as you wait, a question arises: is this really how this goes? Is every dying person and their family just sitting around waiting for a doctor to call back? Is this a medicare issue? Or is this just the reality of the American healthcare system? You call the oncology department demanding answers to these questions, and a very defensive secretary tells you you don't know what you're talking about.

Oh well. Maybe she’s right.

While you await results from the biopsies, you begin to tell people in your life. The people you want to tell first are the ones who have lost a parent. You hope they will relate to your pain, or tell you something that makes it go away. You don't want to tell anyone else because you hate talking about cancer even though it's all you think about. But you slowly start to do so anyway because you've got two weddings and a business trip this month, plus those improv classes you signed up for back when you still wanted to be around other people. With so much face-to-face interaction, it helps to be able to explain why you wish you could evaporate into thin air.

Telling people in your life is both good and bad. It's good because some people genuinely care and show that they're there for you. It's bad because other people either don't understand how to react or are emotionally unavailable. And that makes you angry. And now you're angry a lot. At your dad. At your fiancee. At your friends. At the hospital. At any little inconvenience: People walking slowly on the sidewalk. A store clerk who isn't helpful. Traffic during your repeated trips from Brooklyn to New Jersey. You've been home multiple times every week since the news. Trying to make up for quality time with quantity time. And while everything's now different, it also feels the same. Your dad's pain gets worse. He's prescribed oxycodone, then morphine that he refuses to take. He sits on the bed clutching at his midsection because the tumors in his liver and pancreas are pinching and bulging. Together you watch all the things you usually watch: the Yankees, Knicks, Formula 1, the news, and a bunch of movies. You find yourself being more agreeable than usual because you don't want any encounter to go badly, just in case it's the last. He smokes pot to ease the pain and casually mentions that you'll need to take care of mom when he passes. Then he abruptly changes the subject while you stifle your tears.

You tell your manager at work what's going on. You even tell my manager's manager. You don't tell most of your co-workers because it doesn't feel like the kind of thing you tell acquaintances unless it comes up organically. You're recommended multiple "great" therapists who don't take insurance, meaning their emotional support will cost $275 per session. You complain about this to your fiancee. You snap at your fiancee. You emotionally retreat from your fiancee. You have countless conversations with her about how you’re feeling. You acknowledge that it's hard on her too. You tell her you don't know what to do because you've never been through this. You tell her thinking about your wedding next year is painful because you don't know if your father will make it. You tell her you need her to care for you right now even if you can't reciprocate. You sometimes feel good when she leaves, because then you can't incorporate her into your misery.

A month since the news and you're still going home constantly. At least once during the week and every weekend. It's the only thing that feels right. You help your mom take your dad to appointments and run errands. You start asking your dad questions about his life that you think you'll want to know later on. What was his childhood like? Did he love another woman before mom? How did he prepare to be a father? He enjoys sharing his story. He says his life is a series of adventures, and death will just be the next adventure he embarks on. You tell him you hope he can hang on awhile longer, and he says he plans to fight like hell, which makes you feel better. 

After 6 weeks the biopsies come back and the oncologist confirms the Stage 4 cancer diagnosis. It's almost comforting to finally have a solid fact. No more theorizing or pretending or wondering what will happen next. But what happens next is more waiting. At least 2 more weeks before your father can get hooked into a clinical trial drug that the doctor says can "maybe" extend his life 15-18 months. And there comes the disbelief again.

Sick of waiting, your family manages to get an appointment for a second opinion. With a better hospital in New York City that advertises their cancer department on the radio. And after one visit it's clear this is the place you should have been going all along. And that's 7 weeks your father will never get back. And you won’t even fully comprehend how devastating that is until later.

You transfer care. And then there are lots of forms to sign. And lists of medications to share. And digital apps to sign up for. And phone calls that can only be taken after you've signed up for the digital app. And your parents aren't technical like that. So you try and handle it. And you learn intimate details about your father's medical history. And you tell him what the doctor told you about the side effects of chemo. And he vascillates between anger, indifference, and "tell your mother."

At this point, you can go entire days where you’re almost numb to the awfulness of the situation. Things that made you cry 7 weeks ago you now understand as facts of life. Your therapist (not the first one who tried to end your sessions early but the new one who only charges $100 per visit) even commends you for being able to talk about these difficult family matters with a "sense of clarity." You're proud of your tolerance for pain. Your fiancee says this isn't a good thing.

You start digging into the business of death. Before your 104-year-old grandfather buries his only son, he'll need a new executor of his estate. And he wants to sell his condo in Florida because your parents will no longer be moving there. And he needs someone besides dad to manage his checkbook because he's blind but still pays all his bills through the mail. So you learn what a trust is, how estate taxes work, and how to pay paper bills. You start to compile an inventory of all your family's assets that will need to be sold. You talk to an accountant. Then a lawyer. Then a realtor. You want to be able to handle all of this because it's how you can help your family right now. You can't save your father, but you can act like a savior. And anyway, it's a good distraction—and you'll take those any way you can get them.

But saving comes at a cost. The life you used to have is fraying. You've shied away from hanging out in groups. You're bowing out of plans. You're not writing. Your relationship with your fiancee is volatile. You don't think you’re depressed, because you've been depressed before and this isn't that. With depression there's often no reason as to why you feel bad. In your situation, it makes perfect sense why you're always somewhere between angry, sad, and numb.

Your dad is now really deteriorating. Without chemo, you can count his life in weeks. Then the week he's supposed to start chemo, he gets hospitalized with an unrelated illness—except that every illness is because his body is destroying itself from within. And so another week gets burned. And then nearly 2 months since this whole ordeal began he starts treatment. It feels like a milestone you thought he wouldn't live to see. And then you hold your breath and pray the chemo will shrink his tumors. Ease his pain. Give him time. He's stated your wedding in 13 months as a goal to live for. And he's asked you not to change the date.

Now that all pretense of a long-term future together is gone, the best you and your family can hope for is a "nice" final chapter together. A few more father-son Yankee games. A final husband-wife trip to Europe. Maybe a wedding celebration. These things feel very far away when your father is currently too weak to stand on his own two feet. But hope is all you get in this situation. 

So you draft this essay. Because it helps you cope. And then you sit on it. And go back and rewrite it. Then sit on it some more. Then rewrite it some more. But you don't publish. Because it's "too personal." Because you're afraid of how it will make you seem. Because you don't know what your dad will think.

And while you're waiting, you run out of time.

It happens while you're out of town, because of course it does. A few days after his first round of chemo, he starts to act "confused." Then the next day he's in too much pain to get out of bed to see a doctor. And the next morning he collapses on the floor and is rushed to the hospital. You later learn some bacteria got into his bloodstream that his body was too weak to fight, leading to sepsis.

You're down in Florida with your sister cleaning out the condo your grandfather is going to sell. You foolishy thought you could go away for a week and nothing would happen. Before you even pick up the phone, you assume the worst possible news because your family hasn't called you for a happy reason in months. You arrange to fly home the next day. Florida never felt so far away. Your sister, who lives outside the country, changes her plans and flies home too. The subtext: this could be it.

The next two weeks are spent in the hospital. Your father eventually regains consciousness and starts talking—but he's not himself. He's more prone to confusion, and easily agitated. You cancel chemo for the following week. The doctor says once they discharge him, he'll need to go to in-patient physical therapy just to regain the strength to continue chemo. Your father is still adamant: "I'll do whatever it takes," he says.

It feels like so much time has been wasted. But you still hope that things can get back on track. That there's a path forward. That there's more time.

And then the palliative care team calls. And they make your mother cry. They arrange a face-to-face meeting with your family. And when the doctor tries to talk about "prioritizing your father's comfort," he yells him out of the room. So you go to the "Family Room" and he says your father's chances of continuing chemo are very slim. The sepsis may be under control, but they're now seeing clotting in his veins—a telltale sign that the body is beginning to shut down.

The doctor explains hospice. You can't believe this conversation is happening. And when it's over you realize you talked for an hour, but it felt like a second. You go back in the room and hold your father's hand. He doesn't know what you know. He doesn't want to know. Somehow, you manage not to cry.

The next few days are spent making plans: in-home vs. facility hospice, what medicare will cover vs. what your family has to pay for out of pocket, work-related benefits that can help pay for a home health aide, updating wills, signing a DNR, funeral arrangements. Terrible things that simply must be done.

You also make a wedding.

You do it the day before your father is set to be sent home to hospice. Because you're not sure if it can wait even one more day. Your immediate family and friends crowd into the room where your dad has been dying for the past 2 weeks. The nurses watch from the hall as the rabbi marries you underneath the makeshift chuppah you bought at Party City. You turn and look at your dad a lot during the ceremony. He nods off a few times, because he's weak. But he's there. And he knows you're being married. And he's happy about it. And that's something. 

Eight days later, he dies.

It happens on a Monday evening. A week after he came home from the hospital. Only 3 months after that doctor said he "thinks" he has Stage 4 pancreatic cancer. And three weeks less than the hospice nurse predicted he'd last. You've had home health aides with you all week, and at first your father complained about them. Because he thought he was coming home to rebuild his strength so he could continue chemo. But then he just slept all day. And asked your sister to give him pain meds. And the few times he woke up, he couldn't finish a full sentence before drifting off again. So there were no meaningful last words—just the ones you whispered to him, minutes before he passed. Words like "I love you so much," "you were a great dad," and "I hope I'll see you again." 

His breathing is labored. And then you notice the gaps between breaths become longer. And longer. And longer. And then he doesn't breathe again. You're holding his hand. Your mom is holding his other hand. The home health aide says he's passed. You cry. And cry. And then you call the hospice nurse, and she comes and confirms the death. And then you call the funeral home, and they arrive at 10PM to take him to the crematorium.

You stand over his body one last time, bawling your eyes out. You try and look at his face as intently as you ever have, because you know you'll need to make that look last the rest of your life. When they take your father's body out, you hide in the basement. Then you watch from the window as the hearse disappears down the block. You have little memory of the calls to your family. Or how you fell asleep that night. Or most of the next morning.

You take bereavement leave from work. You write your dad's obituary. You write a eulogy. You coordinate with the funeral home on his ceremony. You blow up a picture of him on a posterboard and buy an easel so you can display his picture during the service.

Four days after his death, you bury him. It's a sweltering hot July day. 100% humidity. More people come than expected, which feels nice. You barely cry during the ceremony, because it feels too surreal. Like someone else's dad dying. You can't even begin to comprehend this reality. That disbelief stays with you throughout the three days your family sits shiva. You're touched by all the people who come out to pay their respects. You focus on them, you focus on all the logistics you need to take care of when someone dies. You focus on anything that will allow you to focus less on the awful thing right in front of you.

And you still half expect your father to walk through the front door at any given moment. Like the last 3.5 months never happened. Because it still doesn't feel like they have. And you're not sure it ever will.

A week after he passes. You pick up this essay. And you rewrite it. And you rewrite it. And you think it sucks. And then you think it sucks less. And so you hit publish. Because it helps you cope. And maybe it will help someone else cope.

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The pain of losing my father will never go away. But with work and time, I hope it can become a little less raw, a little less jagged. What little I've learned of grief so far has taught me that there's no "moving on" when someone you love dies. The best you can do is find a way to bring them forward with you. If that's the case, I hope to one day see my dad again. In the lyrics of his favorite songs. In the summer sky above Yankee Stadium. In the faces of the grandchildren he’ll never get to meet. And if I don't see him, I'll just keep looking. Because I know he’s out there.

Alan Speiser, August 12, 1953 - July 1, 2024

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