You will find no coherent message here.
Three years ago, today, my father’s life ended. Encouraged by my therapist and the anniversary, I write this retrospective — a post-mortem of the experience of my dad’s death and life after loss of a parent. We start at the end.
Roger A. Feusier
February 15, 1955 — February 2, 2017
After a courageous fight with pancreatic cancer, Roger peacefully passed away on February 2, 2017. Roger was born in El Salvador, grew up in Albany, CA, served as a Green Beret in the Army, married Jane Louise, the love of his life, in 1979, welcomed three children in three years, and loved his family well…
1 Percent Survive a Year
Pancreatic cancer is a heartbreaking disease. Late detection and aggressive growth rate leave little time for peace following a diagnosis. About 1 percent of patients survive the next 12 months. Pancreatic cancer does not go into remission without removal of the pancreas. If I was to receive this diagnosis, I would swallow a bullet.
My dad, who we called Rog (pronounced “raj”), was made of tougher stuff. He chose to fight. He chose to endure agony for us, his family, but also for his pride. After all, he had beaten immigration, new language and culture, racism, the special forces, poverty, the big four accounting world, married life, and fatherhood. And, the doctors were telling him he stood a chance; because of his superb physical shape, they could start aggressive chemotherapy beyond what most patients could handle. If the chemo shrunk the tumor strangling the celiac axis of his pancreas and Rog put on weight, they could remove the pancreas.
Gaining weight through 12 rounds of poison, when your abdomen constantly hurts and the thought of eating makes you sick, did not deter Rog. He delegated to his team — the Rog Squad — to fatten him up.
Head of the care team, Jane (mom), barely blinked. They supported each other through 36 years of marriage; their love and hope would carry them through these trials, as well. Mom began rigorous research and planning, all the while activating the quick-reaction re-enforcements. Jess flew down from Seattle, while Johnny and his wife Daniela came north from Santa Barbara. From across the San Francisco bay, I moved home.
While my mom arranged appointments, research trial applications, Nth opinions, and nutrition, my dad rushed to wrap outstanding end-of-life planning, including fairly complex estate structures. Even in the face of personal heartache, their actions were to shield others from pain. Sometimes, I wonder if this show of strength made it harder on the kids. Probably not.
Jess provided quiet, background support for everyone, and Johnny made us laugh while listening to us cry. I had a few jobs — take care of the dogs, watch movies with Rog, and find ways to get Cannabis into his system. He displayed obvious mood elevation, nausea decrease, and appetite increase when medicating, but he would not help himself unless prodded. When my mom suggested “a few tokes on the vape,” Rog reacted poorly. So, it was up to me to get my dad stoned.
I avoided mention of my main responsibility. The family worried I might “go off the deep end” as we lost Rog. The first day home, Johnny found me in the garage ripping a bong and pounding Sierra Nevadas as though they would heal Rog. Johnny said, “can’t you think about Dad and not yourself for one minute?” The guilt I feel, from my inability to act as my dad, still rears its head from time to time. But, that piercing question from Johnny kicked me in the ass; I resolved to use the time left to grow as close as possible to my dad.
And, though I often broke my resolution in the face of overwhelming fear, over the next 15 months I learned more about my father than the previous 26 years. By the end, he and I were closer than any point in our past. The whole family circled the wagons and we tightened our bonds. I’d guess we do this to prepare to weather the future storm of loss.
But, it worked. 15 months after diagnosis, we celebrated Rog’s strength as hope grew strong within us. Rog had a shot. The chemotherapy had shrunk the tumor and Rog was gaining strength on my mom’s cuisine. After an exploratory surgery to ensure the margin around the tumor was sufficient, we heard the good news. We could schedule surgery to remove Rog’s pancreas.
As soon, as the pancreas is removed, he would be cancer-free. Holy shit. Our relief told us how unlikely we thought this outcome was. We scheduled the surgery and celebrated like he was cancer-free. Moulin Rog would recover quickly from the surgery; medical problems couldn’t beat him.
The Pain of Hope
The surgery was successful. This meant that Rog was cancer-free. Also, he was free of his pancreas, gall bladder, part of the duodenum, and more. Worst, he was free of his ability to produce insulin and glucagon, and regulate his blood sugar.
I am unsure if my dad knew that cancer-free meant diabetic, before the surgery. He was angry about being a diabetic. For about a month after surgery, my dad’s behavior necessitated that mom counted carbohydrates, tested his blood sugar, and administered insulin.
Then, he grew stronger. He began to take interest in his previous retirement hobbies — pottery and bees. He and my mom went to a party, and Rog was the fromage à la crème. Mom said Rog talked non-stop. It had kicked in; he had internalized that he would live.
When they got home that night, they booked at trip to Maui.
My mom’s excitement couldn’t be contained. Her bag was packed a week before the trip. They had an opportunity to live again.
And, they lived happily ever after.
The fairy tale ends here.
The night before their flight to begin their new life, Rog had to confess something to his wife. The past few days, a pain in his abdomen had been steadily increasing. He was unable to ignore it any longer. Praying the discomfort was merely post-surgery complication, they drove to the emergency room.
The doctors in the ER were unperturbed. They sent my parents home with some antacids, painkillers, and reassurance that the Maui trip should proceed as scheduled; the pain was normal post-op discomfort. Elated to have survived their first “remission scare,” they slept — dreaming of warm waters and sunny beaches.
At morning light, my mom woke to find Rog bent over the toilet vomiting bloody bile. His discomfort was far beyond the “normal post-op pain” mentioned at the ER. The trip was off. They bundled a feverish Rog into the car and drove to UCSF, where Rog’s oncology team stationed.
A couple hours, 1 PET scan, and 1 endoscopy extinguished all hope.
My dad would not live out the month.
I am ashamed that we all felt relief. We would not draw out the misery just to beg for a few scraps of probability. We were done. Rog Mahal would die with whatever dignity he still possessed.
We moved him home by the end of the week.
Dying of Thirst
Rog spent the first couple days saying good bye to his parents, siblings, and best friends. The next three days were for us and dying.
My life with bipolar disorder I entails difficulty sleeping, even while medicated. I sleep a few hours a night. So, why not take advantage of my sleep schedule and volunteer for the night shift? We decided that my mom would sleep while I was on duty, and she would care for him during the day.
This decision was an inflection point in my life. I spent the next 2 nights sleeping on the love seat at the foot of my father’s death bed. This used to be my room when I was in high school.
I guess it is only fitting that I was awoken in the darkness by urine. I wet my bed until I was 12. A few nights a week, though his alarm was to ring at 4am, he stripped my soiled sheets with a smile. After putting on fresh sheets, in his tighty-whities, he hugged me and told me he loved me. He never shamed me. I knew I could do anything and he would never forsake me.
I felt moisture on my arm. Adrenaline coursed through me. My dad was standing next to his bed, wobbling, with the detached end of his catheter in his hand. He was spraying me with piss.
Maybe he wasn’t hallucinating. Maybe this was a joke to get me back for my weak bladder. That would have been funny. This was not.
He was in the midst of an hallucination brought about by water privation. I jumped off the couch and grabbed the wrist holding the insertion end of the catheter. “Dad, it’s me. You’re ok. Here, sit down.”
Frustrated, he pushed me away and yelled “I have to pee. I need to urinate right now.”
In his state, I would be unable to catheterize him safely. “Pee. Dad, pee right here. It’s ok, just pee.” I wrapped my arm around the frail man as he urinated on our feet. I don’t know if he knew who I was at the moment, but he hugged me and cried for a few minutes in silence. I bawled. No longer would this man be my strength, my backup, my dad. He was already becoming a shell of himself, retreating into his mind.
When he began to slump, I laid him in bed. He was calm, but unable to speak. “Dad, I’m going to put the catheter back. Go to sleep, dad.” I grasped his shrunken penis and placed the catheter in his urethra on the second attempt. “I love you so much, dad. I’m right here.”
Later that night, Rog screamed. Once again, he was out of bed. He was trying to rip out the catheter while yelling what sounded like military commands. When I approached, he seemed to think I was his best friend “Uncle Milt.” He spoke to Milt for a few minutes before getting riled again. He shouted about “mission ambushes” and “setups.” I convinced him that he was in the infirmary and his team was safe. Docile, he went back to sleep for duration of the night.
Worse than watching 200 pounds of muscle turn to 130 pounds of jaundiced skin and bone, seeing the most intelligent man I knew lose his mind, broke me. His dignity was gone.
The next day he retreated further into himself; he no longer responded to outside stimuli.
Just past sunset, my sister and I kissed my dad good bye. We left my mom laying next to him, whispering love and prayers. Jess went to her room to read and sleep. I went upstairs to get high and relax before my shift. 10 minutes later, I got a group text message to my sister and I, from mom. “I think he’s gone.”
The Moment Man Becomes Thing
The man who raised me, taught me right from wrong, and loved me with all of himself, was now an inanimate object, a body, a thing. He was an it. It was done.
The next hours were a mix of shock and practicalities. I tend to process momentous events rapidly but incompletely. Probably a defense, my brain compartmentalizes everything emotional and focuses upon practical tasks related to the occasion. Tasks like removing the corpse from the house.
Dad chose to donate his body to scientific research. One phone call brought the body snatchers. They stripped him and wrapped him in a body bag. Their leader asked if any of us wanted time to say good bye to Rog. We all said no. This wasn’t him. We already said good bye.
Like that, his body was gone.
But, he left a legacy. My new mantra.
What did he leave behind?
He left a widow. A woman who loved him and shared a life with him. He left her in mourning, but he left her better than he found her. He left her three children and 37 years of memories.
He provided life and thought to three children and never asked for recompense.
He is survived by his two grandchildren, Elliott Jane and Ryan Roger. He did not live to meet his namesake, Ryan Roger, but Ryan hears stories about Pa from all of us.
Rog left assets. Houses, trusts, and large donations to his favorite charities.
Dad died with a wonderful reputation and long list of achievements. From taking Visa public to leading the M&A group at PwC, I heard nothing but awe from his colleagues. Most importantly, he left work and came home to spend time with us. He coached our teams, watched our recitals, cheered at our victories, and comforted us through our failures.
When I look out my front door, I see his four beehives. Though his bees have long come and gone, like Rog, their ancestors keep the colony going. If the sun shines, they make honey. This thought helps me.
Finally, Rog left his exorbitant collection of fishing gear. When I sit back in my seat and look out onto the water, it is almost like we are fishing together again. I love this time with him.
At the memorial service, I was struck by the powerful feeling our family would heal. I saw my father’s sensitivity in Johnny. I saw Rog’s strength in my sister; at 5’3″ with a baby-bump, as she spoke his eulogy to hundreds. I saw the people around us, aching to take our pain away. Most importantly, I saw my dad in myself. If he was part of me, then I had the right stuff.
But, I have scars from the last 15 months.
I struggle to separate traumatic memories from the rest of my memories of Rog. At first, when I began to think of my dad, I was assaulted by images of the aggressive psychotic man. I was unable to call him to mind without trauma for the first half year.
Somehow, I quarantined the disturbing recollections and then avoided them. Though unhealthy, it was positive movement; I could think of dad and laugh. I could remember his advice.
Able to remember his model behavior and sage advice, I was blessed with guilt, shame, and feelings of failure. By my age, he had already immigrated to the US, served at the highest levels of the armed forces, earned a bachelors and masters degree, married a woman he loved, fathered three children, made partner at a big four firm, owned his dream house, was at peak health, and saved money. By comparison, I am 31, single, slightly depressed or manic, 20 pounds overweight, bad cholesterol, just quit a stable job (burned out), drink too much, smoke too much, exercise too little, and have minimal desire to do anything productive.
I term this behavior “apathetic unhealthicide.” Why should I work hard, exercise, eat healthy, avoid drugs, and save for the future? I watched my dad act such. He deferred his relaxation and search for meaning until his retirement at 59. His healthy lifestyle earned him less than a year of play before cancer. I understand the probability calculations, but I’m angry. Maybe it’s an excuse to avoid responsibility for my own actions.
Though writing this hurt, it was cathartic. Almost a scar remover.
What would he want me to do now? I do not need to guess; he told me. He wanted my family to love each other and know how much he loved us.
I miss him. I miss his counsel and company. I miss his smile. But, I also remember his advice. And, I can smile too.
Please consider learning about and donating to PANCAN. They are reducing the impact of pancreatic cancer.
If interested, you can learn about medical body donation here: https://www.sciencecare.com/how-does-the-body-donation-process-work.