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Dr. Bob's Brain

Photojournalist Karen Pulfer Focht documents a family's journey from a devastating diagnosis during the Christmas holidays in 2015 to goodbye two and a half years later

By Published: December 26, 2018 11:14 AM CT

There were only a few warning signs that something might be wrong. Dr. Robert Bolding thought he had perhaps suffered a stroke. There was the numbness on his left side, and his family said his behavior was odd. He was inclined to ignore the frequent headaches, figuring maybe it was just the weather.

But there was one symptom he couldn't ignore.

A musical guy who sang to his children every night when they were little, Bob didn’t understand why he could no longer sing.

A NOTE FROM THE AUTHOR:  It was three years ago this Christmas week that my dear friend Dr. Robert Bolding was diagnosed with a deadly brain tumor. Because I am a photojournalist, he and his family asked that I document his journey. In the most spiritual way, this is a Christmas story. Told through excerpts from my blog, it is a story of faith, hope, love and friendship. Bob was a simple man who wanted a simple life. As he grew closer to his own death, he grew closer and closer to God. His faith sustained him; he was a wise man on a path to holiness. This year will be the first year his family will spend Christmas without him. The peace and love expressed by his family, friends and Bob himself during his illness truly represent the Christmas spirit and a true Christian life of faith, hope and service to one another. Read more about his journey in the blog on my website,  karenpulferfocht.com. – KPF 

During the week of Christmas in 2015, the Boldings found out why. Doctors determined that Bob had an aggressive tumor – a GBM or Glioblastoma Multiforme – growing in the right side of his brain, the hemisphere that processes music. He was given only a few months to live.

In the hospital, Bob’s handsome and usually smiling face became very serious as he pondered what was to come. There were things he wanted to live long enough to see, like his daughter Katherine’s marriage and his children’s children being born.

Bob’s symptoms were improved with steroid treatment and he underwent brain surgery – twice – at Methodist Hospital in Memphis that same Christmas week. He returned home, singing once again, often bursting into song for the steady stream of longtime friends and neighbors who came to see him every day. Casseroles and soups overflowed from the refrigerator. He was feeling so much love that he jokingly said he wished everyone could experience having a brain tumor.

Bob’s sense of humor was obviously still intact.

Their church community rallied around the Boldings. A lifelong member of Second Presbyterian Church, it was a deep and abiding faith that helped sustain Bob and his family throughout his ordeal. 

His pastor and church friends visited, praying over and anointing him.

When the family was asked how people could help them, the answer was always the same: they wanted – needed - only prayers.  

“The things I want, money can’t buy,” Bob said. “I wouldn’t even know how to ask for what I need, but God knows and continues to bless me and send me people to love me.”

After surgeries, he underwent radiation and chemotherapy treatments at Memphis VA Medical Center. Bob was an Army veteran who deeply appreciated the care he received at the Memphis VA. He loved the people there, eventually becoming an ambassador for the center.

During his illness, family members sought answers and treatments. His daughter Buffy frantically tried to educate herself and family about Bob’s tumor; she looked for clinical trials, thought about organizing a race to raise funds for research, anything she could do to prolong or even save her father’s life. At a certain point, though, she helplessly resigned herself to the idea that her father would not be getting better – ever.

She posted: “The type my dad has, has a very low survival rate of 1%. The other 99% of people diagnosed are measured by if they live up to 5 years (only 5% with his diagnosis do), and a sickening number live between weeks and 2 years... It's devastating and lacks funding and promising research... Why isn't there a 5k for it here in Memphis? We are full of research facilities...”

Bob opted to treat his Glioblastoma, the deadliest form of brain tumor, with an Optune cap, a relatively new treatment at the time. For 20 or more hours a day, he wore an electrode cap and a backpack that delivered an intermediate-frequency alternating electric field to his brain. Novocure, the company that makes Optune, says the electric field stops tumor cells from dividing. Eventually, though, Bob stopped using the cap – his balance had become compromised and wearing the device was awkward.

The tumor and treatments were taking a toll. In addition to balance issues, Bob’s vision was becoming limited.

An educator with master’s and doctorate degrees, Bob was naturally inquisitive and needed to be engaged. He had a really good brain, full of knowledge and always ready to learn more at every turn. He was naturally an avid reader but in time was able to get through only a few pages a night.

As the days came and went, Bob and his family found pleasure in the simple things: puppies, bunnies, smiling babies, flowers, good food and their treasured time together and with friends.

Bob seemed to be taking his disease in stride, remaining grateful for each day given to him. As the scar on his scalp faded, he was filled with deep gratitude and humility and his spiritual journey deepened.

“What more could I ask for,” he reflected. “I have been blessed for 60 years with a wonderful family, friends and church.”

But the days became longer as Bob could do less, and time for him passed slowly. “There is nothing worse than to have nothing to do all day,” he said. Friends visited and played music or read the Bible to him, activities that comforted Bob as his health declined, then stabilized, then declined again.

As the pain increased, Bob became depressed and irritable, which was very hard, his family said, for those who had been caring for him, especially his wife. 

During his illness, Bob mused about his love for Ingrid, how lucky he was to be with her, how beautiful she was. The idea of leaving Ingrid behind and alone weighed on him. As his vision and voice weakened, Bob would gaze at Ingrid and whisper “bussi,” German for “kiss.”

The family set goals for Bob: weddings, babies, visitors, holidays – anything to keep him looking forward. He lived long enough to walk his daughter Katherine down the aisle at her wedding and give her away. He lived long enough to see his first grandson and namesake, Bobby, born on Feb. 26, 2017, to son Mark; granddaughter Charlotte’s birth on March 27, 2018, to Katherine; and for several other family milestones.

Most times, the house was a hive of activity. Bob tried to put on a happy face for friends and guests but when the pain became intense, he wouldn’t talk. He once asked a friend, “Do you have any idea how hard it is to be in this much pain and have all of your friends there and then know that there is nothing anybody can do about it?”

Over time, his appetite faded, his skin thinned, his muscles became limp, he became incontinent and very weak and, ultimately, bedridden.

It became increasingly important to the family, however, that Bob be able to maintain his dignity. Ingrid reminded guests that even though Bob’s eyes might be closed, often he was awake and listening. At times visitors would think Bob was sleeping, only to find out he was awake when he offered an unexpected word of wisdom, a joke or correction. Once, out of the blue, he even corrected a song lyric.

Mark Bolding thought his father handled well the fact he had become dependent on others, his sense of humor seeing him through his illness. The two were very close and Mark knew how hard it was for his father to be so vulnerable.

Life was volatile and everyone became very good at living in the moment. There were many times his family thought he was close to death but Bob would bounce back. He had an amazing rally last Christmas when it was predicted he might not live through the week. He smiled, engaged with guests and even made jokes about what might happen to a family friend's boyfriend if he got out of line.

But then Bob revealed he was losing track of time and no longer knew what day or month it was. He slipped between realities, hallucinating about dancing girls or horseback riding. Other times his mind was seemingly razor sharp. He resisted medicine after being put in hospice because he did not like the sense of losing control of his mind. He had a good brain, a very good brain, and he fought to keep it that way.

Shortly after granddaughter Charlotte was born, Bob told his sister he knew that his time was near.

As the summer of Bob and Ingrid’s 35th wedding anniversary approached, Bob started to slip away. He had difficulty eating, stopped talking and stared for long periods of time at the ceiling. Ingrid lived out her vows, at Bob’s side, caring for him for better or for worse. She said she would have cared for Bob that way for another 10 years.

“I am with the love of my life,” she would say. “I am good.”

Two and a half years after being diagnosed with a deadly brain tumor, Bob Bolding passed away peacefully, surrounded by the people he loved the most.

His family believes that as the sun rose that morning, Bob’s soul left his body and rose to the heavens as well.

Close friends and family wept together, touched him for one last time and sang prayers over him.

It was hard for Ingrid to let his body go. She wrapped her hands around her husband’s face until the moment on May 26, 2018, that they took him away from their home on a stretcher draped with an American flag. Baby Charlotte was looking up in the sky.

Bob Bolding lived a simple life, just as he had aspired. He loved his family, he loved his God and he loved his country. Always the teacher, thinking about others to the end, he donated his body to science.

He remarked more than once how lucky he was to have had so many good friends surrounding him during his journey. To those friends, luck had nothing to do with it. As one put it so well:

“You see the goodness in us. But it's a reflection of you.”



Topics

Bob Bolding Karen Pulfer Focht Glioblastoma Multiforme Cancer faith

Karen Pulfer Focht

Karen Pulfer Focht is a freelance photojournalist in Memphis and former staff photographer at The Commercial Appeal. She has won numerous awards in her career, many for in-depth projects about children and families in Memphis. Most notably, she was presented with the Society of Professional Journalists' Medallion for Distinguished Service to the American People for her series on infant mortality in Memphis, "Born to Die." Karen was recognized as one of the world's top contemporary photographers by both Magnum and LensCulture in 2017. Her work is regularly published in newspapers and magazines around the world.


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