October 6, 2018

Joyce Carey The September Monday that we buried Phil dawned bright and sunny, one of the last remnants of summer. Phil’s niece Louise and I arrived at the Farley Center early to check on food for the reception, set up a beverage table and prop up two boards of pictures of Phil in the various stages of his life.

In late December 2016, Phil had pneumonia. He was sick enough to actually ask to go to Urgent Care. The doctor ordered blood tests and x-rays, advised fluids and rest, and sent him home. At 10 pm, a nurse from Urgent Care said that they had seen something called “blasts” in Phil’s blood test results. She told us to go to the Emergency Room first thing in the morning for further tests. I Googled “blast.” A blast, short for myeloblast, is an immature blood cell that is normally found only in bone marrow. Its appearance in the blood stream is a bad sign.

Thirty or so friends and family began to gather in the upstairs room at the Farley Center, waiting for instructions from Bethany, our funeral director from Cress. Bethany somehow managed to be both omniscient and invisible. When it was time, she directed us to go downstairs to the parking lot where the Cress van was parked. An ordinary white van, not a hearse, was parked among the guests’ cars. If I noticed the van on the way in at all, I thought it belonged to the caterer.

We spent the entire day in the emergency room at UW Hospital. Periodically, a nurse came in to extract another vial of Phil’s blood. He was subjected to an ultrasound and more x-rays. Monitors pulsed and beeped. Phil dozed from time to time. I played with my phone. After many hours, tests were read, and the result was not good. Phil was diagnosed with Acute Myeloid Leukemia and referred to the Carbone Cancer Center.

Two men from Cress opened the van’s rear door and slid Phil’s body out on a gurney. He was enclosed in a black body bag. When the bag was unzipped, one could easily see the outlines of Phil’s body, wrapped in the patchwork quilt that I made for this day. I expected the wrappings to be more like those of a mummy, tidy and smooth, the contours of his body softened. But no, there was Phil’s nose, his chin, and his size 15 feet. Our granddaughter Robin began to sob.

We met with Dr. Williams, a hematologist at the Carbone Center in the UW Hospital Clinic on January 10, 2017. We invited Louise to sit in with us. She has nursing background and understands medical terminology,. Dr. Williams described the course of the disease, always fatal if untreated. At Phil’s age, 88 at the time, aggressive treatment was not recommended. Modified treatment could prolong his life, but not cure the disease. Phil agreed to a course of chemotherapy. Dr. Williams performed a bone marrow biopsy, confirming the diagnosis.

Shedd Farley, who manages the green sanctuary burial grounds, had fashioned a wooden pallet to receive Phil’s body, providing a means for the pallbearers to carry their burden to the gravesite in the woods. Slots beneath the pallet were shaped to receive three long metal pipes, which served as handles. Philip, Erik and grandson David took one side. Cousin Jack, neighbor Harry and Jenny’s new husband Steve took the other. They reported later that all the tall men were on one side. The shorter men had to compensate by holding their side higher in order to keep Phil’s body level. One doesn’t anticipate these things.

Phil began a course of chemo treatments on January 17. Once a month, the round of treatment consisted of a weigh-in and blood test, and five consecutive days of chemo injections into what the nurse termed his “belly fluff.” There were four injections each day, Phil’s tummy growing more red and tender each day. By the fifth day, Phil was exhausted, and spent two or three days recovering by sleeping late and taking numerous naps. In the weeks between treatments, he recovered some energy, only to be knocked down again by the next round.

Bethany guided us in forming a cortege following Phil, with me at the lead. Our colorful group walked slowly along the rough pathway, the distance of a city block or two to Phil’s grave. Shedd provided rides in his golf cart for those who found the terrain challenging. I visualized funeral processions in New Orleans, mourners carrying umbrellas, walking, dancing, to a brass rendition of “Just a Closer Walk With Thee.”

Our monthly visits to UW Clinics fell into a rhythm. I pulled the car up to valet parking, Renee, Mike and the other drivers brought over a blue wheel chair if we needed one and whisked our car away. Marilyn was usually on duty at the reception desk in the Carbone Center. Phil memorized his patient number and anticipated her routine, giving answers before the questions were asked, which always brought a smile from Marilyn. We’d take our seats in the chairs, and dispense coffee from the machine. (French Vanilla for Phil, Mocha for me.)

The waiting room for chemotherapy is strictly functional. At one end is an art station, with a table and bins of art supplies. I rarely saw anyone utilize this resource. At the other end is a large television, usually broadcasting Fox news. If no one was watching the TV, Phil would reach behind it and pull the plug. At times, the waiting room was nearly empty. Sometimes there were many patients. They tended to keep to themselves, drawn in to their own thoughts and misery. In contrast, the nurses were uniformly cheerful and positive. We had our favorites, and Phil, always upbeat and outgoing, was clearly a favorite of all the nurses.

The six bearers eased Phil’s pallet to the ground next to his grave, slid the pipes away and replaced them with lengths of heavy rope. With great care and concentration, under the direction of Shedd, they lowered Phil’s body, pallet and all, into the earth.

After sixteen months of treatment, chemotherapy stopped being effective in slowing the leukemia. Phil was fainting more frequently, and growing increasingly exhausted. After one particularly bad fainting spell at home, I called the paramedics, and Phil was taken to the emergency room and then to the hospital, where he spent six days. Dr. Williams sent his assistants to give Phil the news that treatments would cease. He was told he had just a few months to live, and that he should not return home due to his frequent fainting. He was admitted to rehab at Capitol Lakes where he spent three weeks trying to regain some strength in his legs. We used that time to talk about our future, and to find a place where Phil would be well cared for. We called assisted living “Our fourth bedroom.”

We were lucky to find Brookdale Assisted Living in Middleton. It’s a small facility with only nineteen rooms. One of the rooms was due to be vacated in June shortly after Phil’s time at Capitol Lakes. Philip and Jack Hoffman transported lamps and two dressers from our house to Brookdale. I spent a day trying to make Phil’s tiny room look homey. I hung pictures and one of my quilts, brought over our new television, a bird feeder and a Christmas tree. Phil has always loved Christmas lights, and I wasn’t sure he would be around to enjoy them in December. Phil was good-natured about his new residence, although he would much rather have been at home.

Kelly (Crocker) took her place near Phil’s grave, and summoned me to stand beside her. The others found places to stand or sit beneath the trees nearby. Elizabeth played “How Can I Keep from Singing” on her violin. Kelly began, speaking her wise and sometimes humorous thoughts about Phil and his love of life. The sun filtered through early fall branches, the stillness broken by weeping and occasionally, by laughter. Robin played her accordion, the girls joining in a quiet duet for their grandfather. “May the road rise to meet you, May the wind be always at your back, May the rain fall soft upon your fields, and until we meet again, May God hold you in the palm of his hand.”

When Phil was first at Brookdale, he was in pretty good shape. He took his meals in the dining room, spent time checking e-mail on his laptop, and ambled out to the back patio to read. We spent a lot of time on the back patio, talking, reading, enjoying the day. Sometimes we went for a short drive. Life seemed almost normal, except for Phil’s fatigue and his tendency to faint, which happened more and more frequently. I visited every day, usually twice, taking him the morning paper, returning around dinner time. We sometimes watched TV in the evening—Planet Earth, Jeopardy. The Christmas tree timer always clicked on at 7:15, and it always made us laugh.

When Kelly finished the eulogy, Elizabeth played The Ashoken Farewell. Kelly invited us all to share our own thoughts about Phil. Louise said Phil was a great listener, supporting her through her life decisions. I spoke about the richness of our last few months, a time when we talked about our years together, about the big questions of life, death and our curiosity about the afterlife. I wished Phil safe travels and said I’d see him soon. I placed his favorite winter hat and a deck of playing cards in his grave. One by one, our friends stepped forward and placed mementos with Phil’s body—sheet music, loving thoughts, poems, flowers.

As the weeks went by, Phil’s health steadily declined. He relied on his walker to navigate even the few steps to his bathroom. He slept most of the day, and had almost no interest in food. He developed a yen for baked beans, but after a few spoonsful, he was done. He had me bring bags of chili-flavored chips to snack on. His friends brought him candies and sweets, but these gifts languished in his little refrigerator, uneaten. His wonderful caretakers reported increasing falls as Phil’s strength gave out. Hospice nurses were called more and more frequently to check on his status. Sometimes he had a good day. Sunday August 26 was one such good day. I pushed him in his wheelchair to the car, and we took a drive here and there, to Waunakee, to Mendota State Park, and to see the demolition of the old State Office Building. He was happy and alert. It was our last outing.

Shedd provided several shovels so that those people who wanted to could fill the grave from the mound of muddy earth nearby. I lifted one partial shovelful, startled at the weight. Many people took a turn, and the hole started to fill with earth. As a few of the men, plus Robin, worked steadily to finish the work, most of us retraced the path to the Farley Center.

Phil managed to celebrate his 90^th birthday, Sept 1. Except for Elizabeth, who was still in Antarctica, the whole family gathered at Brookdale for ice cream and cake. Written on the cake were the words “You are my Sunshine.” Although earlier in the day Phil was not sure he was up to a party, he rose to the occasion and had a great time. It was one of his two goals—to reach his 90^th birthday and to see his sister Kay, who traveled twice from California to visit with him.

Phil was lucid until the last week of his life. Then he lived two realities—the one he shared with us, and his own. He would make statements with great seriousness that made no sense. On Thursday morning, Sept 13, he was determined to get out of bed, as he said he needed to go to the bank and get $75 worth of quarters. I assured him that I could do this errand for him, and he settled back to rest. He dozed off and on, sometimes opening his eyes and speaking to someone or something. I couldn’t understand the words. He was engaged with someone, lifting his arms and laughing out loud. That evening, Louise came to see him. For a little while, Phil was his old self, talking about familiar things. Then he looked past Louise, and asked “Who is that? Don’t you see him? It’s your grandfather, Louise.”

Phil was seeing his own father, Louise’s grandfather Hubber.

Friday morning I brought Phil his newspaper as usual. It was about 9:30 am. Phil left us just minutes before I arrived. Hubber had taken him home.

Family and friends gathered in the upstairs room at the Farley Center. There was a fine spread of catered food and ample places to sit and visit. The mood was one of subdued happiness. Friends chatted, met new friends, looked at pictures of Phil in all stages of his life. After an hour or so, people began to drift away. Louise, Alice and the girls collected plates and napkins, washed a few dishes. We gave away surplus food, and gathered up our things. As we walked to our cars, the sun was still shining. Everywhere except in my heart.