Joe Neyer: Dying with dignity by living with quality

This is the beginning of a three-part series about Joe Neyer and his journey through death. Click here to see part two, and here for part three.

Joe Neyer looked out the windshield and tried to decide. Left or right?

It was a cloudy day in late November 2012 and Joe, a contractor, had been in this parking lot hundreds of times. No, thousands. It was the Ace Hardware in Oxford on College Avenue. He knew where he was. He knew where his house was. He just didn't know how to get there. Left or right?

Joe didn't know yet about the tumor. He would learn of it in an hour or two. He didn't know his condition was terminal. He would learn that in four days. He didn't know he would turn his death into a conversation project. All that mattered at that moment, the thing that really concerned him, was how to get home. Left or right?

Joe was only five blocks and one turn from home, but the sky was no help, the clouds were too thick, he couldn't find the sun. He took a left, looking for home. A lucky guess.

Four days later, at the University of Cincinnati Medical Center, surgeons remove the tumor from his brain. Joe, 46, wakes to the news. All of it bad. The tumor is 4.5 centimeters, the size of a golf ball. Glioblastoma multiforme grade 4 is a cancer so aggressive and mean-spirited it has a nickname in the neurology community: The Terminator.

His wife Laurie is there, and his three sons: Alex, Aaron and Zeke. Joe is foggy, but insistent. "I gave them 45 years of lessons in 45 seconds: 'Be good to women. Put the toilet seat down. And here's how to fix the pond.'"

Is the toilet seat an allegory?

"No. It's just a toilet seat."

There is reason for the urgency. Glioblastoma multiforme is incurable. The American Brain Tumor Association describes it as "highly malignant" and "very aggressive." It is a creature with "finger-like tentacles."

Joe has to make a decision: treat or not treat. It is not a question of life or death; his fate is sealed. The cancer always wins. The patient always dies.

The median survival time for patients after diagnosis is 14.6 months. With treatment, Joe would last longer, but the treatments are difficult and never end. Without treatment, he will not live as long, but he will avoid the effects of chemotherapy and radiation. He might last six months. Maybe.

The question, the struggle, for Joe is complicated. How to fight to live while striving for peace? How to accept death without being consumed by its inevitability?

Joe will try to die with dignity by living with quality.

It is difficult from the start to find balance.

One week after surgery, Joe goes home and chooses chemotherapy and radiation. He loves life and wants more of it.

Joe is strong and otherwise healthy. He is funny and warm and charming. He is also a fighter and stubborn. And arrogant. Joe thinks he can be the exception. He can get five or 10 years.

The initial treatment is a 50-day bombardment. It takes a lot out of him, more than he figured, but he recovers. He builds a new laundry room in his house.

He starts to make a bench with some old walnut. His hands, always the steady hands of a builder, are shaky, his vision blurred. "Jesus," he says, "I can't even build."

Joe changes his mind. He is done with treatment. The cost is too high.

Then the boys come home. The house is filled with their voices and laughter. He wants to live. To hell with dignity. He wants time.

Joe changes his mind again. He opts back into treatment. That morning on Facebook, he wrote: "A few more benches and games of chess with the boys and sitting on the couch with my sweetie, well worth it. Today, I glued up the first bench and it will get oil this weekend."

The first round was difficult, the second round is more so. Joe is on the couch for days. It is like the flu, a really bad flu.

The medicine feels like it is taking him in the wrong direction. He stops again. Doctors tell him he will live maybe six months. Maybe.

"Treatment felt like choosing my way to die," he says. "Stopping felt like choosing my way to live. I started building another bench. It felt like me being me. Once the decision is made, the living is pretty effortless."

Laurie, Joe's wife since 2007, embraces his decision. "Even if it means it takes him out 6, 12, 18 months sooner," she says. "I think the chemo might kill him, and I know it was killing his spirit."

Joe stays at home. He will never work as a contractor again. But he will continue to build benches. "There is something nice about a bench. Either sitting down alone or sitting with somebody outside, it's good for you always."

Joe and Laurie's relationship begins to take the form of caretaker and sick person. They fall into those roles reluctantly but neatly.

Then Joe makes another decision. He will turn the story of his living and dying into a conversation. He will talk to a reporter – that's me – and a photographer, Carrie Cochran. We will document the entire process. His only requirement is that we stay through to the end, tell the story honestly and tell the good parts and the bad. "I won't care," he says, "I'll never read it."

He starts work on another bench.

Don and Phyllis Neyer had eight children: Barry, Diane, Donna, Dave, Dan, Jenny, Mary and then Joe. They are all Neyers, a prominent family of builders that goes back generations.

But Joe was always something of an outlier. If not a black sheep, certainly a nonconformist.

After graduating from St. Xavier High School in 1984, Joe went to Miami University for one year. School, he says, wasn't really his thing.

The summer after his freshman year, in 1985, Joe got crosswise with his dad. "I was 19 years old. I knew everything. I was drinking and partying," he said. "Oh, I was a total pain in the ass."

One night, Joe left a note on his pillow at home that said simply, "I don't belong here anymore." And he was gone.

He kicked around Oxford for a year and then hit the road, hitchhiking. He just vanished. "We didn't know where Joe was for one year and a half," Don says. "And then he called me one day at work and said, 'Dad, I'm alive.'"

Don stood up from his desk and walked out of the office. He went home and told his wife Phyllis that Joe was still alive. Phyllis baked Joe cookies and mailed them to him.

Joe returned to Oxford and odd jobs. One night he went to a wedding and his friend, Rebecca Remke, told him she was going to kiss him goodnight. So she did. Or at least that is how Joe remembers the story.

Rebecca – Becky – would capture Joe's heart before ultimately breaking it.

Joe and Becky married on Valentine's Day in 1990. They moved to Oregon the next year and lived in a yurt. Yes, a yurt. They had three sons, Alex, Aaron and Zeke in the next four years. They cut wood to warm their home. They washed cloth diapers in a metal pail under a tree.

One night at a potluck supper, Linn and Ida Spaulding asked Joe to help them build their home. Joe needed money, and loved the Spauldings.

Two weeks in, Joe realized something. A hammer felt right in his hands. He could see lines and understand angles. Joe was a builder just like his father, and his father's father. "It was in my blood." Joe and Becky moved back to Ohio in 1995, and Joe became a contractor.

Joe and Becky bought a small house in Oxford a few blocks from the Miami University campus. On the advice of his father, Joe also bought health insurance for the family.

Between jobs, Joe rebuilt the family home, creating a master bedroom with a small porch off the southeast corner. He designed the room so it would be filled with light every moment of the day. Becky would die in that room.

In 1999, Becky felt something in her breast and got a mammogram. After treatment and illness, treatment and metastasis and then more treatment, she died in their bed, just as the sun was rising and filling the room with light. She was 35.

In the four years between Becky's diagnosis and death, Joe learned about cancer and pain and being a caretaker. He learned about nausea and medicine and kindness. He saw what cancer did to the patient and those who loved her. He knew the joy of leaving nothing unsaid, and the pain of regret.

Joe remembers every detail of his last night with Becky. "Beck used to call me Joey-Joe. She put my face in her hands and said, 'I love you, Joey-Joe.' That was the last thing she ever said to me." Joe fell asleep next to her at 2 a.m. He woke in the morning and went down to get the hospice nurse. When he came back up the stairs, Joe watched Becky take her last breath as the sun was rising.

"I always regretted sleeping that night. I should have been with her."

In the spring of 2013, after Joe stopped working, his sisters organize a fundraiser at the Oxford Community Arts Center. Joe is not in financial hardship, but he has lost his income. He hates the idea of charity, so he will make benches, and they can be auctioned.

He builds and he builds. The wood is speaking to him. It feels, he says, like living. His mind is clear and his hands are steady. His plan is working. He is fully alive and present.

On the night of the event, more than 200 people show up. Oxford funk mingling with buttoned-down Cincinnati money. Seven of Joe's eight siblings are here. The eighth is in India. Joe is happy and the benches sell like crazy. One goes for $2,200.

At the end of the night, Joe's father offers a prayer. Don is a man of few words. "I am so proud of my son, Joe. Amen."

And then the headaches begin. "The head pressure has been getting a little bit worse. I can feel some clumsiness." When Joe says something hurts "a little bit," he is lying. It hurts a lot.

According to his doctors' timetable, this is when the tumor should return. It will be the beginning of the end. Or the middle of the end.

Joe and Laurie talk about getting an MRI to know the status of his brain. Instead, they go to San Francisco. Aaron, Joe's middle son and a computer science major at Case Western Reserve University, is on an internship there and Joe thinks it might be time to get the whole family together. On the first day of summer, Joe, Laurie, Alex and Zeke fly to California for a nine-day trip.

"It was awesome. It was all of us. The first day, we all sat outside. Then we took a walk. Aaron and Zeke walking together. Alex just hanging back a little, like he does. I can call it the best mile-long walk of my life."

Four of the nine days, however, Joe's head hurts so bad he needs to stay in the hotel. When he comes back to Oxford, Joe stops driving. He cannot trust himself anymore. After the Fourth of July, he decides to go get the MRI. Not a big deal, he says, just information. "Information is neutral."

On July 9, 2013, Joe, Laurie and I go to the UC Hospital West Chester complex for an MRI and a talk with Dr. Rekha Chaudhary, a neuro-oncologist at the UC Brain Tumor Center.

Joe and Laurie married in 2007. They had known each other far longer. Laurie and Becky were good friends. After the imaging, and before the appointment, the two of them wait nervously.

"It's so weird to see him in this setting," Laurie says. "Since March, we haven't been seeing doctors."

I ask again why is he telling his story publicly. Why allow a reporter and a photographer to be in the room when getting information so personal?

"In my life, there is nothing cooler than a real conversation. That's what I hope comes out of this story. The story I am telling is a universal story."

Joe said, ultimately, this was one of the last things he could do. "My father raised me to ask, 'What can you do for the world?'"

And then Dr. Chaudhary walks into the room.

"Do you have any pain today?"

"Yes, a little headache."

"On a scale of 1-10?"

"Oh, just a one."

Laurie and Dr. Chaudhary look at each other. They both know he is lying.

Joe acknowledges that the headaches are frequent and he gets confused. Then Dr. Chaudhary gives them the results.

There has been no regrowth. There is no tumor. Chaudhary seems a little surprised.

So why the pain, why the headaches, why the confusion? Dr. Chaudhary says there is a "flare," probably a scar from surgery or inflammation from radiation. It won't get worse and will probably get better.

"This is good news," she says. "This is all good news."

Neither Joe nor Laurie knows what to say. Laurie looks like she is trying to let the information in. Joe looks like he is trying to really understand it. But he feels a little vindicated. He leans over in his chair and kisses Laurie on the shoulder. "Love it," he says.

Everything is off balance. The plan was for acceptance. To die with dignity by living with quality. But now, suddenly, Joe isn't even dying.

Both Joe and Laurie are a little lost in their relationship. Their roles have changed. They never really wanted those roles, but they had grown into them. Joe was sick, and Laurie took care of him.

One scan changed all of that.

Joe is no longer sick. Not technically, anyway. Laurie is no longer defined as a caretaker. She is back to being a wife. Finding their way back to their normal roles would be difficult enough. They have to do it knowing it might not last long. Joe is nearly certain to go back to being sick.

They are sitting at the kitchen table and they are either saying their sentences a little bit differently or they are hearing them a little bit differently. But they are each annoying each other a little bit.

Laurie: "I just need to figure out how to adjust. I was so prepared for the worst. It didn't know what to do with the best. ... So how do I live? Can I leave the house? Can I leave my husband alone? Am I taking care of him? Am I just his wife now?"

Joe: "OK, well, this just means we are right here. OK, that's fine. I've always been pretty comfortable with right here. But, yes, maybe we did not expect this here to be our here."

He says stuff like this a lot.

Joe finished working on two more benches in August. Benches represent the best of both of his parents. One will go to Joe's sister's cottage. Joe's mother, Phyllis, will sit on this bench. Phyllis has had Alzheimer's disease for years and her memory is entirely gone, her dementia nearly complete, but Joe loves the idea of her sitting on the bench.

"She'll sit on the bench and rub her hands across it and she will feel every grain. She always encouraged art and Dad encouraged building. So that's why I love benches so much. Functional art."

Joe is feeling good again. His thinking is clearer. He can do numbers again.

He has always been joyful. He likes music and dance and talk. Lots and lots of talk. He adores nature and he whistles frequently. One morning, sitting at his computer, he whistles. A wren returns the call. Joe whistles back and then the bird again. This happens for a while before Joe realizes he is "talking" to a bird. He slides to the door and looks for the bird.

"Honestly, it feels like I don't have cancer right now. I'm just drinking water."

Laurie has started teaching more piano and giving more voice lessons. She has a stunning voice and performs regularly around Oxford.

A friend offers them the use of his beach house on Hilton Head Island in South Carolina. Joe and Laurie decide to drive.

And then his head hurts again, on the drive to South Carolina a headache so bad Joe calls it "splintering."

They came home early.

In September, Joe can feel something is not right in his brain. He begins working on his koi pond in the backyard. It sits right outside the door of the garage, the garage where Joe can spend hours a day on the Internet, talking to people about living and dying.

The sound of water soothes Joe, but the idea of Laurie needing to take care of the pond in the future bothers him. So he drains it, replaces the plumbing and the plaster and the woodwork around it. It is lovely. But more importantly, it is done.

One year and one week after Joe could not get home from the hardware store, Joe and Laurie drive back down to West Chester for another MRI. It feels like winter this morning. The cold is settling in.

This time, the news is not good.

A small tumor has returned in the same exact spot. The neuro-oncology team will meet the next day and make recommendations. Joe thinks they will suggest another surgery.

The urge to fight more aggressively remains. Joe wants to live. That is the hardest part for him. Joe is a fighter. But he is afraid that wanting to live gets in the way of living.

Joe had been struggling to accept his fate without giving in to it. He has wanted to fight cancer mostly by not fighting it. Or by not fighting it in the way people expect. He takes one anti-seizure pill per day, plus vitamins, some herbs, a lot of water, and he smokes marijuana to help with pain and prevent headaches. He has started "toning" – a guttural hum – to attack the cancer. He has thought he could beat the cancer, or stave it off, for as long as he was intentional.

Nearly every week for a year, I have asked Joe the same question: Are you happy with your decision to stop treatment? The last time I had asked him, he said: "John, it wasn't really a decision. The universe always gives you the information you need."

But this new tumor, a recurring tumor, changed the name and the game. Now he had "Glioblastoma-r." The "-r" could qualify Joe for new trials.

Now he has to think about medicine again. And life and death and time. And hospitals and pharmaceuticals. He has nine vials of blood drawn to see if he is eligible for new treatment.

Joe qualifies for a drug trial. He is eligible.

Joe sits for a week with the information. He has to consider traditional medicine again. Joe is stubborn and confident. His father is generous and wealthy. Don tells Joe to avail himself of any options, regardless of cost. "Send the bills to me," Don tells Joe. "Don't even open them."

But by beginning to accept death, Joe has come to really enjoy life.

This new protocol, again, is not offering a cure. It is only offering time. But for a man with glioblastoma, there is nothing more precious than time. "The best case is someone who showed positive tumor inhibition for 12 months which, I gotta say, seems like an eternity to me now."

But then Joe finds his path again. He won't do the treatment.

On Dec. 12, he wrote about it and called it freedom.

"I assure you we are at peace with this decision. Life is a sexually transmitted terminal disease and we are all the better for being blessed enough to dance with life, as it dances with us."

Joe starts wearing a DNR bracelet: 'Do not resuscitate.' His relationship with the tumor that will kill him, which he has named Doug, is like a dance. Sometimes he leads, sometimes Doug leads. He wants to accept death, but not embrace it. He wants to acknowledge death, but not succumb to it. But first, there can be no fear. "If you stop fearing death, it loses its power."

Joe thinks he can befriend death and still deny its power. "I'm not giving up, I'm choosing my path. I still think I can get five to 10 years. I want some more time; I am so pleased with my life just as it is."

But the headaches just won't stop.

At the start of the year, Jan. 3, 2014, Hospice of Cincinnati comes to the house for the first time. He walks like he is a carrying a weight. His eyes are sunken.

How are you feeling? "Fine." Pause. "Fine."

The meeting with hospice is only for admissions. This is not the start of care, this is paperwork and an interview to make sure Joe is eligible for the program. Joe is continuing to walk around the subject of death. Laurie puts her hand on his wrist. "It does not mean we are counting days, we just want to get our ducks in a row."

Because of his tumor, and because he is off treatment, Joe's entry is automatic.

In February, Joe starts to feel better. We drive out to an old home in Bath, Indiana. A stunning 19th century farmhouse with 12-foot ceilings.

When Joe and Becky first moved back to Oxford, he lived in this house and refurbished it. He shows me every corner, immensely proud of the home and the memories in it. That afternoon, I drive him back to Uptown in Oxford. He buys Laurie a necklace and a brooch for her birthday. It is a good day.

Five days later, Joe thinks he is dying. He sends me a note asking me to come visit that day. That morning. "Been a rough couple of days. My feeling is that it will get to the point where there is a fairly full cessation of functioning rather suddenly. But we will see what happens, or someone will, at least."

Brain tumors are odd. They grow, they plateau, the brain makes accommodations. Joe begins talking about a radical revolution in consciousness. He begins to talk about nonlocal communication. Some of it does not make a lot of sense.

Laurie calls hospice and asks about the logistics of Joe starting the protocol. About how it will happen: "If there has been a change."

Joe wants to know, too. And then everything changed. He got better.

Next: In life, we are in death. Joe Neyer's next six months prove the adage