In researching treatment options, Lori Top met with medical personnel at other facilities that seemed detached and uninterested in the traumatic impact John’s condition was having on their lives. She says she was pleasantly surprised about John’s first visit with Dr. Foltz. “He asked John about his life. He made it clear, she says, that he wanted to treat John the person and not just the tumor.” John told him about his work as an architect, about his and Lori’s daughter, Isabelle, who was 6, and about his daughter, Katie, who was 12 and lived with the couple part of the year. He told Dr. Foltz he wasn’t ready to leave them behind.
After assessing John’s condition, Dr. Foltz recommended an operation to take out as much of the mass as possible. Because the tumor was in the brain’s right frontal lobe, which controls function on the left side of the body, Dr. Foltz believed John would retain most of his abilities since he was right-handed. Removing the tumor, however, would amount to taking almost a quarter of John’s brain and with that came such risks as a change in personality. There was no way to know for sure. Dr. Foltz encouraged the couple to get a second opinion.
Their visit to another facility for that purpose, says Lori, brought a three-hour wait to see a doctor and ended with her “leaving the exam room in tears.” The second-opinion physician told the couple that John would soon be dead “regardless of what we did.” The next visit to Dr. Foltz, however, renewed their commitment to fight and they gave him the go-ahead to develop a plan for surgery and follow up treatment.
On Jan. 25, 2006, Dr. Foltz performed a craniotomy on John that removed the tumor and allowed for a more complete diagnosis of the disease and its prognosis. Lori’s fears about a personality change in John were abated when she realized as he recovered that his “dry sense of humor came through unscathed.”
The subsequent pathology report specified John’s tumor as an “oligodendroglioma,” grade three. It was both good news and bad. John could expect to live two or more years compared to three to six months with other types of brain cancers. But while subsequent assessments have found John to be “cancer free,” the disease is still expected to take his life.
“Today, I live with the fact that I have a terminal illness,” said John, who has continued to work throughout his ordeal of the past year. “I actually feel blessed,” he said with a small laugh. “I don’t sit around now. I get out and do things. If Lori and Isabelle want to go for a walk, we go for a walk. We appreciate the time we have together, no matter what we’re doing.”
John calls Lori his hero. “She’s cried with me and she’s also told me to pull it together and keep going.”
Although the couple has medical insurance, the co-payments and the paperwork of the past year have, at times, threatened to overwhelm them. Lori, also an architect, recently went back to work as a store designer for Starbucks, hoping her salary would help get them out from under their medical debt. For his part, John took sick leave and vacation time for his treatments that came to only a little over 100 hours.
“I got brain cancer,” he said, “I didn’t win the lottery. Life goes on and it’s a good life. I’m grateful for all that we have.”
Dr. Foltz said the recent establishment of the brain tumor tissue bank is one thing that keeps him positive as he works every day with patients like John who face terminal illness. “It gives me a lot of hope as a doctor,” he says, “and that’s why I can do the work I do. Because I have hope.”