My father is fine - San Angelo man's family coping with brain cancer diagnosis

My father is fine.

“Perfectly fine,” he says. “Fantastic.” Those are his words. The answer he gives after I ask, hesitantly, “How’re you feeling, Dad?” as he sits in a hospital bed, at home, in his living room, watching television, dying slowly from a brain tumor.

It was a stupid question, I suppose. Made sadder because I’m paid to ask smart questions. But I couldn’t think of anything smart. Or deep. Or funny. All I could do was sit next to my father as he watched another episode of Wheel of Fortune.

“Oh, you dummy,” he says, laughing at the contestant in the white button-up shirt and large glasses who guessed the puzzle wrong.

“Yeah… what an idiot,” I say, staring at the screen. “Hey, you need anything, Dad?”

“No. No, I’m fine.”

I wasn’t going to write anything. I didn’t think I was capable of writing at all. But here I am. Writing. It’s what I do. Professionally as a journalist. And sometimes when I take the occasional half-assed stab at fiction. So I’ll start with what I know. A story about someone else’s life.

It began with a fall.

Dad stumbled in the bathroom. It happened on the second floor of my parent’s apartment in San Angelo. He fell and hit his head. Mom was downstairs and heard the sound of his body crashing into the shelves by the toilet. She raced to the bathroom and found him unable to sit up.

Dad tried to explain that he was fine. It was just a little fall, but his words were slow and slurred. Then Mom saw the side of his face. It was drooping. She called an ambulance, worried her husband of 49 years had suffered a massive stroke.

He hadn’t. But we wouldn’t know the reason for another six hours.

“Well… I had quite the day,” he managed at last to tell me over the phone from his hospital room at Shannon Medical Center. I listened to him talk about what had happened earlier that morning. The fall. The trip to the hospital. But he was struggling with his words. At one point he said, “The serenity men… you know, serenity… they came… and they tried picking me up to bring me here.”

Mom clarified that an EMS crew arrived, placed him on a stretcher, and carried him down the stairs to a waiting ambulance. Dad couldn’t quite articulate the who, the what, or the where.

But the why came after an x-ray.

“He has a brain tumor,” his neurologist said, pointing to a dark blob on one side of the chart. A big one. A glioblastoma.

“It’s what he… you know… the governor had. No… Not the governor. He was in… New Mexico? No… Arizona,” Dad said.

In 2017, Arizona Sen. John McCain was diagnosed with a glioblastoma. That’s what Dad was trying to tell me. And he would know. He’s an avid follower of politics. Always has been. Watching CNN, MSNBC, The News with Shepard Smith, PBS Newshour and 60 Minutes—that was his life. Dad could name every power player in Washington. Every person who had run for president in the past decade. He loved that stuff. Ate it up.

And yet McCain’s name somehow escaped him. That and the fact McCain had been a senator, not a governor.

It was the tumor. Like ocean waves to a sandcastle, it was taking little bits of him piece by piece, grain by grain, fact by fact, smoothing over once carefully constructed details and leaving only faint traces of what had been there before.

What my father could remember about McCain’s glioblastoma was this: it was fatal. After the diagnosis, McCain survived a little more than a year.

A neurologist said my father wouldn’t live nearly that long.

We were told the tumor is in Dad’s parietal lobe, an area of the brain dedicated to processing sensory information: touch, taste, hearing, smell, and sight. Among other functions, the parietal lobe handles spatial awareness, allowing the body to maintain its balance.

Dad can no longer get around without a walker or a wheelchair.

To make matters worse, the tumor will damage his cognition, speech, and ability to write. Dad enjoyed crafting and telling stories in his spare time, so that last one especially hurts.

The tumor is growing at a small, but alarming rate, doctors said, a centimeter or two per day. It would double in size after roughly seven weeks. It has tendrils, like a jellyfish, that are spreading to other parts of his brain. An MRI determined the tumor was invading his occipital lobe, which is responsible for vision.

At the time of this writing, Dad can no longer read or see the buttons on his TV remote control.

The survival rate for a glioblastoma is about 6-12 months. Under ideal circumstances. Without treatment, the doctor gave him between two weeks to two months to live.

That was a month ago.

I remember the phone call with his neurologist. Mom was in the hospital room, trying not to cry. So was my sister, Sarah Marie. She had canceled everything and driven four hours from Austin to be there. All I could do was listen in on speakerphone, sitting in a spacious conference room at the Indianapolis Star, more than a thousand miles away.

A team of doctors spelled out his options—all of them were bad.

Option 1: He could have surgery, but there was no guarantee it would remove every last bit of cancer in his head. Remember those tendrils? They would grow back.

We were warned he could die on the operating table. We were told there was a strong possibility the surgery could cost him his vision, his hearing, and his ability to speak.

All in all, if everything went perfect, and that was a big IF, an operation would buy him maybe an extra 2-4 months of life. Then the cancer would return. There was a risk of him becoming a vegetable, and staying in a nursing care facility until the day he died.

That was Option 1, and it was the more optimistic choice out of the others

Option 2 was to have a biopsy and then undergo chemotherapy. The costs and benefits are tedious and too stupid to list here.

Option 3 was to do nothing. To leave the hospital. To allow nature to take its course. A team of hospice nurses would see to his needs until the end came.

And that, by the way, was the one certainty we were given: his death was imminent. Its timing came down to a murky window of weeks or months, but not years. A Hobson’s choice between my father dying either in a facility, or dying at home.

And I want to pause here for just a moment to say how extraordinarily well he took hearing that news.

If you know my dad, really know James Clifton Tufts (Jim to his friends, ‘Jimmy’ when his mother was alive, ‘Jamesy’ to my own mother when she’s feeling playful), then you’ve witnessed how perpetually calm, uncommonly nice and almost Zen-like his demeanor can be.

I’m his son. I’ve known him for more than 40 years, and I can count the number of times he’s lost his temper. I don’t even need all the fingers on my left hand to do it. He screamed once in California, late at night, when the bathroom toilet broke and sewage was spilling into the house. And I don’t think that sort of outburst counts. Everyone should get ‘a pass’ on plumbing disasters.

I myself have uttered more swear words in the past ******* month, just in thinking about his death, than my own father has probably cussed in his entire life.

He’s the kind of man who if he got hit by a freight train, and survived, would tell you, “I’m fine. Perfectly fine. Fantastic.” He would say that calmly, even if his legs and arms had been amputated by a 3,000-ton locomotive. He’d go so far as to ask, in all seriousness, if the train was OK. “Just find my arms and legs. We can go and apologize to the nice railroad people later.”

Do you know my dad? Tell me that’s not him.

And that was the same man in the hospital gown last month, connected to all sorts of wires and tubes monitoring his vital organs, as a doctor in a white lab coat stood there and gave him a death sentence.

It was quiet for a moment. The only noise in the room came from the beeping of instruments keeping watchful track of his heartbeat and blood pressure. And the sound of my mother sniffling.

“Oh… well… I want to do whatever’s best for Mary and the kids,” he said at last.

He was so calm. Not a single outburst. Not even a tear. Perhaps he was in shock. I know the rest of us were. Mom was choking back emotion. Sarah Marie seemed to be holding it together. And I had my phone on mute, so no one could hear what I was saying, alone in a workplace conference room a time zone away in Indiana.

The doctor went over his three options: surgery, chemotherapy, or hospice. It took a while to explain. It took even longer to decide what he wanted to do. The tumor was nearly a month old at this point, and it was already stripping him of his ability to respond using clear sentences.

He asked each of us what we thought. And then when it came to my turn, he asked my opinion on going into hospice. And so I told him this:

“Dad, if that’s what you want to do, to leave the hospital, when you go home the nurses will make you as comfortable as possible. Every day you wake up, Mom will be there right by your side. You’ll have your cat. You’ll have your TV. You’ll get to watch all your favorite Westerns. You’ll get to watch them until the very end.”

You have to know something about my Dad. He grew up on a steady diet of black and white television, and was always partial to shows with cowboys and sheriffs. Whenever I visited, he was usually seated in his recliner, enjoying episodes of Stagecoach and Wyatt Earp.

Actors like Hugh O’Brian and Morgan Woodward portrayed characters who solved their problems with their fists or their guns. I’d sit on the couch with him, watching Charles Bronson—Yes. THAT Charles Bronson donned in cowboy duds—as he took care of bank robbers and horse thieves using his six-shooters and a few choice words.

The fictional characters my father admired were all tough, quiet men driven by their moral compass to do the right thing under whatever circumstances they found themselves in. They didn’t curse or shout. They didn’t get agitated or show fear. They stepped outside with their spurs on, walking defiantly through a dusty street at high noon, guns ready, knowing full well any moment could be their last. They fought on. Most of the time they won.

In the end, my father chose to go home and watch his Westerns.

I hugged him for the last time two weeks ago.

It was a short trip. Three days in San Angelo. I flew from Indianapolis to Austin, then drove until I got to my parent’s front door. Mom opened it. We hugged. Dad was excited to see me. So was Mom. She had set up a recliner next to his hospital bed in the living room. That’s where she had slept every night since he’d come home from the hospital.

We talked that first night until it was time for Dad to get some rest. Then I went upstairs and slept in my parents’ bed. It was weird. My father’s life was shrinking. That included a list of places he could and could not go. Like his bedroom. He probably would never sleep in it again.

The next day I went to work.

My managing editors at IndyStar, bless them, have been extremely supportive throughout this entire process. They encouraged me to go home. To stay as long as necessary. And they were uncommonly kind by pretending to believe my assurances that I would get loads of work done in Texas.

That was certainly the lie I told myself on the flight. I’d work remotely while seated across from my dad. It would be easy. Just talk, write, repeat.

I think I managed to file all of two stories. My ability to concentrate lately has been awful. Unless you hold a pistol to my kneecaps, my thoughts tend to wander.

I struggled to write, even when it was quiet while Dad napped, a thing he’s been doing more of lately. Even when there weren’t multiple phone calls being made to insurance companies, to social security, to the military—Dad’s getting an honor guard at his funeral after 22 years of service in the Air Force—I just couldn’t write.

There were other interruptions caused by a steady stream of friends and well-wishers who checked on my parents.

I’m not complaining about that, by the way.

My mom and dad have been active members of Lions Clubs, the American Red Cross, volunteers at the hospital, the Rainbow Room, and active members of their church. They’re blessed to have so many people who care and want to support them through this agonizing chapter of their lives.

When I wasn’t working (or trying to), Dad and I sat together in front of the TV. We watched his Westerns and his favorite game shows, like Wheel of Fortune and the Price is Right. He seemed to enjoy it when contestants won thousands of dollars in cash. They always looked so happy, like their lives suddenly had new and exciting opportunities that weren’t there before.

Eventually he’d stop watching TV. I offered several times to read him whatever books he wanted, but he always declined.

That’s another thing about my Dad you should know—the man doesn’t want to be a burden on anyone. Not ever. He thanked me, profusely, for buying him a cup of his favorite flavored tea, aptly called ‘The Cure’, he could enjoy from the safety of his recliner.

But the thought of someone going out of their way to help him, to do literally anything because he’s incapable of doing it himself, has always mortified my father. And yet here we are. Since his diagnosis, my mother has to bathe and feed him, wash his hair, and dress him every day.

He’s apologized to her, several times, for having a brain tumor.

Members of the East Angelo Lions Club installed a wheelchair ramp outside my parents’ apartment before I left. Only a short time ago, Dad enjoyed taking trips with Mom across Texas. He drove. She navigated. They took flights and traveled the world together: Africa, Italy, Great Britain, and Europe.

Thanks to that wheelchair ramp, he’s thrilled he gets to go outside again and just sit in the sunlight.

On my last day in San Angelo, after I closed my work laptop, after I packed my bags and set everything by the door, Mom helped Dad get to his feet. He stood there, unsteady on his legs as he gripped his walker, then he threw his arms around me, and we hugged for the last time.

In October, just three months ago, I was standing outside with my Mom and Dad, ready to get on the road and drive the two days it would take to move to Indiana. The hug he gave me then felt different.

His arms had been stronger, the embrace firmer, fiercer. Now he held onto my shoulders, partly to keep his balance, and to say all the things he wanted me to know while he could say them in person—that I was a good kid, that he was proud of me, and that he loved me very much.

“Now… get the hell out of here,” he said, a weak smile plastered on his face.

“Yes sir,” I replied.

Then I grabbed my things and went for the door.

In our family, there are three goodbyes. There’s one that happens when you announce you’re going to leave. There’s a second farewell before you exit. And then there’s a final goodbye as you’re driving away—Mom and Dad always stand outside, and they’d wave until you were out of sight.

Dad managed the first two goodbyes, but not the last.

We said farewell to each other in the living room. And once again, before I walked out of their apartment. But after I set my suitcases in the trunk of the car and turned around, no one was there to see me off. The door was closed.

Stupidly enough, I walked back and peered awkwardly through the window. Doing so made me feel a little like Peter Pan—a kid who hadn’t, but should’ve grown up—there on the outside looking in, searching for someone who was no longer there.

The window faced the living room where my father’s hospital bed and chair sat, but they were both empty. Then I heard my parents talking through the other side of the door.

Mom was helping Dad into the bathroom. After that, she’d dress him in his pajamas and put him to bed. I stood there a moment longer, listening as they chatted idly. It took a moment for me to notice my hand was still raised, ready to knock, wondering if I should knock.

Then I realized the moment had passed. I turned around, got into the car, and drove back to Austin.

It was a four-hour trip. I don’t remember most of it.

My sister was expecting me around 11:30 p.m. that night. She and her husband, Bryan, had prepared the couch so I could crash for a few hours before an afternoon flight. I arrived safely. Sarah Marie and I hugged, and then I went to the couch and settled in.

It took a long time before I fell asleep.

When I awoke the next morning, Bryan had already left for work, so my sister and I drank coffee together and reminisced about better times. We talked about Dad, about life, and about grief.

It’s a hell of a thing losing a parent. We both knew that on some basic, academic level. It’s another thing to experience that loss played out over time. No one knows how long the cancer will last, not until it takes our father from us.

A hospice nurse who visited Dad while I was there said she thinks he has at least another month, maybe more. Dad asked the nurse what happens when people with brain tumors die. With a polite smile, she told him that death was different for everyone, but wouldn’t elaborate.

Dad doesn’t like taking naps anymore. They make him nervous, despite the nurses who remind him it’s important to rest.

Like most people experiencing a crisis, this has caused our family to be closer to one another. We talk every day using a video messaging app. Dad brings up the weather in San Angelo. It’s one of his favorite subjects. And, of course, he tells us he’s fine.

“Everything is fine. It’s fantastic. I love you all.”

Then he mentions all the delicious food he’s eating, courtesy of the Lions and other friends who are showering my parents in kindness. And then, Dad usually brings up a final request he’s made: what he wants all of us to do after he dies.

He wants the family—me, mom, Sarah Marie, Bryan, and my daughter, Sage—to take a trip to New England, to Maine, the place where Dad spent his summers growing up in Port Clyde.

And when we take that trip, Dad wants to come too, in a manner of speaking. We’re bringing his ashes along for the ride. Mom already bought the urn. It’s aqua blue, like water, with patterns that swirl like an ocean wave.

He wants us all to eat at his favorite restaurants. He wants us all to revisit his favorite places. He wants us all to go to the same sandy beach he loved playing on as a kid, building sandcastles before the tides rolled in and wrecked them.

And it’s there that he wants his family, his survivors, to build one last sandcastle in his honor.

“Build when the tides are going out,” he said. “You gotta’ wait and build things right so it takes longer for them to wash away.”

Don’t worry, Dad. We will.

(John Tufts is a former San Angelo Standard-Times reporter who now writes for the Indianapolis Star)

This article originally appeared on San Angelo Standard-Times: San Angelo man's family coping with brain cancer diagnosis