Celebrating life before death

Steven M. Meyer hasn't given up fighting for his life, but he's too realistic to plan for anything but the moment.

The tumors that pervade his body have made even sitting on the sofa an arduous and painful task.

''I'm not angry, and I'm not full of self-pity," Meyer said.

The MIT professor, who advised the White House on arms control with the Soviet Union and helped write state environmental law, refuses to allow cancer to keep him from enjoying his last days. Just as the bonsai trees and the Japanese koi that he tends in his Sudbury backyard have had to adapt to living indoors for the winter, Meyer has had to adjust to the increasing frailty of his body.

The diagnosis came two years ago after a routine colonoscopy. If Meyer had listened to his internist, he wouldn't have even gone for the test. ''You run 5 miles a day, and you don't eat red meat," the doctor had told him.

But Meyer knew from the classes he taught in quantitative analysis that you don't ignore statistics, especially when the matter is life and death. So he insisted. The test proved positive.

After his first operation, on Jan. 5, 2004, the surgeon told him ''there's just a little bit left and hopefully we'll be able to clean it up."

Meyer said, ''My wife and I didn't think anything of it."

But a half-hour later his oncologist visited his room and presented a grim prognosis. Meyer recalled the words: ''With cancer as advanced as yours we don't think of cures, we think of palliative care: how to get you through the next year to 18 months with the least amount of pain and discomfort. You should certainly start to make plans for what's going to happen."

Meyer remembers the shock. For about 30 seconds he felt ''sort of paralyzed," then he accepted the situation, thinking, ''This is who I am, this is what happened and this is where I am."

He was only 51.

''I went back to work teaching, went to chemotherapy, and continued to go to meetings as long as I was able."

Meyer spent the first year doing a lot of research on colon cancer. He looked at the data on drug trials, and worked with his doctor to tailor a treatment regimen.

''It's really been a partnership," Meyer said of his oncologist, Dr. John Wolff, a Newton resident and a Lahey Clinic staff physician for nearly 30 years.

Meyer's wife, Deborah Dineen, said he decided early on ''that he was not going to go chasing all around the word for any lead on any cure," as that would take away from living in the present.

Pharmaceutical cocktails have prolonged Meyer's life longer than initial projections but now even the experimental drugs can no longer shrink the tumors. Still, Meyer continues to make the most of the days he has left.

He just finished two papers for the National Science Foundation on wetlands protection, his monthly column in Aquarium Fish magazine, and a short book based on some of his class lectures.

About five months ago, Meyer lost feeling in his left hand and arm from a tumor that had lodged itself near his spinal cord, making it impossible for him to continue typing. He now uses speech-to-text software to compose e-mail and research papers.

A few weeks ago, Meyer awoke to find that his right arm and hand seemed to be going as well.

''You'd better get to me [for an interview] before my mouth becomes paralyzed, which is something my students have prayed for more than two decades (grin)," he wrote in an e-mail.

His body may be failing, but not his sense of humor.

Meyer grew up in Wantagh, N.Y., on Long Island, and studied politics in college, earning a bachelor's degree at the State University of New York at Stony Brook, and a master's and doctorate at the University of Michigan. He did a year's postdoctoral work at the Kennedy School's Center for Science and International Affairs at Harvard University before embarking on his quarter-century teaching career at the Massachusetts Institute of Technology.

Looking to make his mark, Meyer expanded MIT's defense and arms control studies program to include a component focusing on the Soviet Union. He taught himself Russian in order to study Soviet military books, journals, and newspapers.

''You had to really dig to see what they were doing," said Meyer. ''It was a lot of inferential work like . . . why were they building this, and how did they interpret 'Star Wars' space-based defense systems."

The course took off, and so did his reputation.

He was among the first Western specialists to meet with Soviet military leaders and defense planners. He helped brief President George H.W. Bush for a meeting with USSR leader Mikhail Gorbachev ''to give him our idea of what was going on, which was maybe different from the bureaucracy," said Meyer. ''It was a real pleasure to talk with someone so high up who said, 'Wow, I never thought about it that way.' "

After the Soviet Union dissolved, Meyer shifted his focus to the environment and public health. Based on his real-world experience, he could show students that ''there's a lot more to environmental policy than aluminum tubes and sulfur dioxide; there's also this whole world of politics."

Along with teaching at MIT, Meyer put his ideas into practice, and helped spur the state into rewriting its wetlands protection bylaws.

It was through this effort that he met Dineen, who is Sudbury's conservation coordinator.

''This guy's going to be trouble," she recalled thinking when he first appeared at a town Conservation Commission meeting. His words were blunt, his manner zealous. ''The more I listened, the more I realized he was right."

Over the next few months, they got to know each other.

''We would spend a lot of time walking through the woods, talking, searching for reptiles, and measuring ground water levels," she said. They also fell in love.

''I've grown enormously, not only in the past two years, but since I've met him," said Dineen, who is also 53. ''I'd never known what it was like to have someone you could really talk to or say anything to."

Meyer and Dineen have been married 7 1/2 years. He has a 14-year-old son from a previous marriage, Seth.

Since the diagnosis, Meyer said, ''I've grown much closer to my wife and son."

They didn't tell Seth that the illness was fatal until a year ago, when ''it was obvious that there were no possibilities," Meyer said.

Since then, Seth has been documenting their time together with photographs.

''There are things I'm going to miss -- like the other night when we all played Monopoly -- but I don't dwell on them," said Meyer. ''I don't know how long I have, but if we're just going to sit around and mope, then what good is even this time?"

He has noticed that a handful of people appear to have been avoiding him since learning of his illness. ''I can't get them by e-mail, I can't get them on the phone, and when I run into them at the grocery store they quickly say, 'Oh I have to go pick up the kids.' "

He doesn't think it's because they don't care, but rather that they are uncomfortable with cancer.

There will be no casket at Meyer's funeral. No headstone. No cemetery.

''I don't want there to be a place for people to go and dwell on this, because I'm not there," said Meyer, adding that he would prefer family and friends think about him during everyday life, like when they are walking through the woods. ''The idea of a cemetery where people go every week is sort of kooky. I don't want to leave anything like that around."

(Meyer also said he hopes that his story will encourage people to have a colonoscopy as part of their routine medical care; health officials say turning 50 is a good milestone for the colorectal cancer screening procedure.)

As he talks about his intention to be cremated and how he hopes to be remembered, he leavens the conversation with dark humor.

''I told my wife to . . . mix me in with the bonsai potting soil. She didn't like that," Meyer said.

''I want my wife to remember me and the good times that we've had, but I want her to move on," he continued. ''I don't want her to be in the shower thinking that I'm trying to communicate with her through the nozzle."

Meyer is Jewish, his wife Irish Catholic. Buddha statues can be found both inside and outside their home. ''I find them peaceful," he said.

Meyer also collects bonsai trees, which are wintering in one of his garage bays, and has four koi, which were moved from a backyard pond to the basement after the season's first snow.The decorative fish -- the largest is 18 inches long -- happily swim around in a 700-gallon tank Meyer built, complete with a filtration system housed inside two trash barrels.

At one time numerous aquariums filled the house, but the maintenance became too much for Meyer. They now sit in the basement along with old gym equipment and cross-country skis that he is longing to use one last time. Eager to share his hobby findings with other enthusiasts, Meyer has been writing a monthly column in Aquarium and Fish Magazine for the past 17 years.

Meyer held out telling his students about his inoperable condition until he felt the time was right, which fittingly occurred during a passionate discussion in his ''Fundamentals of Public Policy" class about the spiraling cost of healthcare.

He recalled that one student said, ''I was reading in the article you assigned, Professor Meyer, that some people are being treated with medications costing $10,000 a month to extend their life for three to four months and I think this is totally ridiculous. What a waste of money that could be used more effectively to help the hungry or for other people whose diseases can be treated."

Without missing a beat, Meyer replied, ''I have terminal cancer. I am one of those people. My drug treatments cost $16,000 a month and the purpose is to give me three more months so I can make it to the end of the semester, and you're telling me you want to pull the plug?"

The class fell silent -- at first thinking it was Meyer's usual game of devil's advocate.

''Let's argue about this," said Meyer, ''because I sort of agree with you. What am I going to do in three months and what's the purpose that it's worth treating me? Could that money not have been used in a better way to cure more people?"

He proceeded to engage the students in a discussion about the best use of healthcare dollars.

''The class was extraordinarily effective that day," he said.

Despite his two-year battle with cancer, Meyer feels fortunate compared with people who are killed in accidents or some other sudden incident without being able to put their affairs in order and savor the time they have left.

''It's a shame one has to come to [realizations] through such a final mechanism," said Meyer, ''that we're not aware enough of ourselves to get there without this kind of thing. . . . It always seems like we have tomorrow."

Visit www.acg.gi.org/patients/cgp/cgpvol1.asp for more information about colonoscopies. Susan Chaityn Lebovits can be reached at lebovits@globe.com.