Feb. 20, 2014— -- In 2003, as Richard Bandy prepared for cancer surgery that would bathe his abdomen in hot tumor-killing chemicals, he and his wife, writer Sonya Lea, talked about the possibility of his death, but also about potential impotence.
The couple, then in their 40s, had been sweethearts since high school and said they enjoyed a close, sexually charged relationship.
"We did the usual things everyone does with a life-threatening illness -- we got wills ready and secured all the practical business," said Lea, 54, who now lives in Seattle.
"We looked at what our dreams were for life and got our bucket list," she told ABCNews.com. "We were so optimistic. If sex doesn't work, we'll figure out other forms of sharing our erotic life. Many people who are injured or impotent have active sexual lives and we think we can do this."
Bandy even discussed allowing Lea to take another lover.
What they didn't expect was that surgery would go terribly wrong and internal bleeding would cause a brain injury. In the decade since, Bandy could physically have sex, but his personality was forever altered.
"You go into surgery, and you don't imagine you will end up with a different man at the end of it," said Lea.
In a Feb. 12 article for Salon, "How My Husband Forgot Sex," Lea writes about Bandy's loss of short- and long-term memory and his ability to initiate and recall decades of marital intimacy.
"The man who taught me to explore, has become as unknowing as a stranger in a strange land," she writes. "Three years after the brain injury, it still isn't possible for him to ask what he wants, or conduct a conversation, or remember the ways my body responds."
Bandy had a rare form of pseudomyxoma peritonei or PMP, a cancer that currently only affects about 5,000 Americans, according to Dr. Paul Sugarbaker, director of the Center for Gastrointestinal Malignancies at the Medstar Washington Hospital Center. It develops after a polyp on the appendix bursts and spreads mucus-producing tumor cells throughout the region.
"It used to be universally fatal and now we cure 80 percent of them with a new type of surgery that involves perineotomy, stripping the insides of the abdomen and pelvis," said Sugarbaker. Neither he, nor the hospital treated Bandy.
The standard of care is hyperthermic intraperitoneal chemotherapy or HIPEC, a highly concentrated, heated chemotherapy treatment that is delivered directly to the abdomen during surgery. But sometimes, a high-dose chemotherapy agent can cause serious complications that can trigger bleeding in the brain or stroke.
"We had a bad case here," said Sugarbaker, who has since declared a moratorium on the use of that chemical at his facility.
In Bandy's case, his brain was deprived of oxygen for a critical period of time after 32 ounces of blood pooled in his abdomen during surgery, according to his wife. Lea said the family settled in a malpractice suit and was not allowed to talk more specifically about the case.
Today, Lea and Bandy have been married 35 years. She writes about their decade-long journey in an as yet unpublished memoir, "Wondering Who You Are," in which she explores issues of identity through cancer, brain surgery, travel, art, food, sex, wilderness and family.
“I love her writing –- it makes me cry,” said Bandy, 56, who contributed several pieces to the book.
“But there are fairly large sections of my life I don’t remember,” he said. “Not anything before high school or college. I don’t remember my kids’ births or my wedding day. I don’t really remember what sex is like before the brain injury.”
Now, Bandy is back at work as a manager for a physical therapy clinic working with patients.
“Living day to day, I didn’t realize what I had lost until years later,” he said. “I have had to accept that I am a different person. But I have no regrets going through the surgery. ... I am one of the few to survive –- 10 years –- and I am fortunate to be alive.”
But his wife said Bandy “can’t multitask in the same way. He can ask specific questions, but he is not drawn into conversation.”
This, she confides, is one of the most difficult hurdles in their new marriage. "All of my attraction was tied to his verbal loquaciousness. It was the magnet. All of this affect of his personality drew me to him."
His recovery was "three times as long" as Lea expected. And in the end, "You are in a relationship with someone you don't know if you actually will remain attracted to."
Lea also became the caregiver, which presented its own challenges in their sexual relationship.
When the children, now 30 and 27, called home from college, Lea said she put index cards in front of Bandy that prompted him to ask, "How was your day today?"
On dates, she would ask him to prepare on a topic so they could have conversations. "It doesn't come naturally to him," she said.
And in the bedroom, she had to become "more masculine" and initiate their sexual encounters, telling him what she wanted.
"In someone with a brain injury it has to be done a thousand times," she said.
For two years, the couple traveled, living in France and India, helping them to reshape their relationship. "He had to negotiate a different language and driving skills and cope with a different culture which made him move up a level," she said.
Bandy agrees the couple worked hard to make their new relationship work. “I would say our perseverance is probably one of the things I remember most over the last six or eight years.”
Now, the sex is "great" largely because of their journey together, said Lea.
"I fell in love with a man who is not the man I am living with now," she said. "I had to grieve the loss of that man. And that is the surprising part. I had to wait around and see if I could fall in love with a new man.
"It was dicey," she said, "but it did happen."