This article first appeared in the St. Louis Beacon: June 17, 2008 - Pat Millstone of University City has followed reports of Sen. Ted Kennedy's brain tumor and surgery with more than passing interest.
If anyone can relate to what Kennedy and his family is going through, it's Millstone.
Her husband, Jim Millstone, a former senior assistant managing editor of the St. Louis Post-Dispatch, died of a brain tumor in 1992. In the two years following surgery to remove the tumor, Pat Millstone watched her husband deteriorate in mind, body and spirit.
"If you gave him a bowl and a spoon, he wouldn't know what to do with it," Pat said.
This was the cruelest of ironies because for a generation of journalists at the Post-Dispatch, Jim was seen as the sharpest mind in the newsroom, and his accomplishments were legendary. In his years as a Washington correspondent for the Post-Dispatch, Jim won a place on President Richard M. Nixon's ''enemies list.'' Young journalists read and re-read his stories from the 1960s about the law, civil rights and civil liberties and followed his path.
Finding information
"Unfortunately, what families get when they are told this news is not a lot," Don Esstman of Chesterfield, said. "The doctors here are fine. They are good doctors. But in terms of having all the knowledge that you need -- you have to do your own research."
When his wife Suzy was diagnosed with brain cancer, her family spent hours searching for information about the disease.
To help patients and family members find the resources, the St. Louis Chapter of Hadassah is putting together a resource page with links to organizations and support groups that can help. Plans are to add the page to the chapter's web site, www.hadassahstl.org, by the end of summer.
Anyone with information to post on the resource page may send it to st.louis@hadassah.org.
Here are some resources you can check out now:
- The Siteman Cancer Center
- American Cancer Society
- National Brain Tumor Foundation
- American Brain Tumor Association
- National Cancer Institute
- The Mayo Clinic
To subscribe to a brain tumor discussion listserv where patients and their families share information, send an email to: LISTSERV@MITVMA.MIT.EDU
Leave the subject line blank, and set the first message line to:
subscribe BRAINTMR your_first_name your_last_name
Don Esstman said this Massachusetts Institute of Technology listserv was helpful when his wife was struggling with a brain tumor. People from around the world could ask questions and share information, he said.
Jim Millstone's diagnosis, like Kennedy's, came after he suffered a seizure. With that dire news, the couple sat down to discuss the options. It's something Pat suggests every family facing the same situation should do.
Jim told his wife he would fight the disease. "I just knew we were going to beat it," she said.
But first they had to map a strategy. In those pre-Google days, information on brain tumors was harder to come by.
But research eventually led the family to decide on surgery in St. Louis to remove the tumor and later treatment in Boston.
Unlike Kennedy, Jim was not awake during the surgery. In fact, recovery was lengthy. He was in intensive care for quite a while following the operation.
The operation didn't make things better. "His life was not the same after that," Pat said.
As the months wore on, Jim's mental abilities declined and his physical capabilities slid. He could not remember how to climb stairs. He couldn't remember letters and words so he could not read. Eventually, he lost the ability to walk.
Pat put him in front of the television during the first Gulf War. "I thought he would be so interested in what was going on," she said. "But he didn't respond at all. He had no idea what was going on. That was a pretty good sign things were just not as great as I thought they were."
As Jim's abilities declined, he lost his ability to communicate. Since he couldn't respond, friends and family members wondered how much he understood of what they were saying to him.
His colleagues at the newspaper formed a support team. Each morning someone would come and read the newspaper to Jim. That would give Pat, the primary caretaker, a brief respite so she could shower and ready herself for the day.
Treatment options
While much research has gone on and advances in treatment made since Jim Millstone's death in 1992, the outcome for many brain tumor patients remains dire. In cases where surgery is an option, the tumor often recurs.
Patients will find "very good conventional treatment options" in St. Louis, Dr. Gary Ratkin, medical director of Missouri Baptist Cancer Center, said.
"We have excellent radiation therapy available in multiple places in the city. And we have the gamma gun, which is a very focused radiation treatment. It's almost like doing a surgery because you are able to concentrate a radiation beam in such a specific way."
But St. Louisans seeking "cutting-edge clinical trials" must go elsewhere.
"There are very few places in the country that have a dedicated brain tumor set of experts," Ratkin said. "Cutting-edge research is being done at places that have these teams of people working in labs in other areas of the country."
Treatment can include applying drugs in the form of wafers directly to the brain, he said. However, that requires surgery because the chemotherapy must be delivered to the immediate vicinity of the tumor.
While many drugs don't get into the brain, some pills and injections are designed to go selectively to the brain. And new anti-angiogenesis drugs are designed to fight the tumor by cutting off the blood supply to the tumor. Researchers are looking at how to combine drugs for the best outcome, he added.
An exciting kit under development at Hadassah Hospital in Israel will bring earlier diagnosis of the disease. It will soon allow "anyone anywhere in the world to have a brain tumor diagnosis without going to a hospital or having a biopsy," said Joan Denison, executive director of the St. Louis chapter of Hadassah. An anonymous St. Louis couple is funding the project.
The best advice Pat said she could give to others in a similar situation is to "let your friends help." Caregivers of those with long-term illnesses are under a lot stress and need as much help as they can get.
No one knew if Jim understood what was being said, but one day one of the readers tried to skip through a story. "Jim let him know that wasn't acceptable," Pat said.
Surprisingly to Pat, Jim's personality changed. One day he looked at the bedroom set he and his wife had owned for 40 years. "He said, 'Ugly, ugly, ugly,'" Pat said.
And he was finding pleasure in things he had never paid attention to before his illness -- like art and window shopping.
Pat laughed about a conversation she had discussing the world situation with someone in Jim's presence. As they talked, Jim Millstone shook his head at the mention of one country. Jim couldn't answer so the friend started throwing out names. Millstone kept shaking his head and finally, in frustration moved his hands wider and wider in an effort to prompt the answer. "We finally realized what he was trying to communicate was 'Africa,'" Pat said.
"You could never be sure what was in that mind," she said.
With a brain cancer diagnosis, as with many serious illnesses, friends and family sometimes walk a tightrope between being optimistic and being realistic. In retrospect, Pat says, she was unrealistic in her hope that her husband would win his battle with the disease.
"I was in a big case of denial," Pat said. "I took him to physical therapists and speech therapists and all kinds of things, but he just couldn't handle it all," Pat said. "It didn't help -- not any of it. And I think everybody I went to just thought I was nuts."
She recalls a Post-Dispatch editor visiting one day and asking how much longer her husband had. "I said, 'I don't know, Dick, I am still doctoring.'" Jim Millstone died not long after that conversation.
Though the disease took its toll on Jim, it could not erase the contributions he had made, nor the inspiration he gave to so many journalists.
"During his illness, Jim had become quite a gardener, planting seeds and nurturing them to flower, pruning and shaping new growth, plucking out the weeds," reporter Charlotte Grimes wrote not long after his death. "It was what he had been doing with us, and with the Post-Dispatch, all those years."
Kathie Sutin is a freelance writer in St. Louis.