The cancer freed me

THE BALTIMORE SUN

Lowell, Mass. -- CANCER survivorship, presidential politics, people's fears about cancer, the public's right to know. This volatile mix of forces swirled around me for the past year, and even managed to outlive my candidacy.

More than once during those months I wondered whether it was possible to have a rational discussion about surviving cancer in a society that equates cancer with a death sentence.

Put simply, how does someone who has entered the hell of cancer and emerged from the other side help others truly understand how to cope with "thinking" about cancer. This applies not just to would-be presidents but to all survivors.

If you have absorbed the terror of cancer and learned to process it, how do you expect people who have not had this experience to ever comprehend how you think?

I have dealt with cancer for more than eight years. The first three weeks after they told me were days of immobilizing terror.

That is something anyone can understand. Yes, they say, I can see myself doing the same thing; yes, I would also begin the awful descent into emotional paralysis.

But, they ask, how do you cope? Why doesn't cancer and the threat of cancer dominate your mind forever? Put another way, how can you live if you must always think about dying?

Easy. You have no choice. And that survival instinct helps explain how it was possible for me, my wife, for those closest to us, for my doctors, to have considered the removal of a node from my armpit in 1987 to be a minor matter in 1992.

The node was found to be lymphoma, it was removed and the area was irradiated. Although all this was no secret, it recently caused a large flap about access to my medical records.

While this matter about the malignant node was first reported in Boston magazine in April 1988 and was known by other national newspaper reporters during my campaign, it became a cause celebre among reporters who did not know.

Thanks to reporters' tapes, memories and the Boston magazine piece, I was able to limit the fallout somewhat.

One report, however, in the New York Times, suggested that my physicians at the Dana-Farber Cancer Institute did not fully disclose the nature of this lymph node to me or the public and may have minimized its significance. In fact, I was clearly told by my doctors about this node when it occurred and in subsequent checkups.

Their expert medical judgment remains, as they stated publicly, that the node became of decreasing concern as the years went by and I continued to be cancer-free. Nonetheless, they frequently commented that the lymphoma obviously could recur.

In March, my physicians drafted a letter to the Times that referred to the node, among other matters. Because of their concern about patient confidentiality, they wanted me to review the letter.

I asked that it not be sent because I wanted to avoid exacerbating a touchy situation involving a reporter and some of my physicians. My decision was wrong.

Furthermore, my doctors had prepared a summary of my treatment, including the removal of the node in 1987, to be released during the campaign, but we did not get to it before I ceased my efforts.

These doctors did their best to meet the needs of the press, the public and the patient. I put them in a very difficult position when I ran for president, thrusting them into the national political limelight.

Even now, the politics of cancer is never far from my mind. Cancer is not just a physical threat. Being told that you have cancer is psychologically devastating.

Why? Because of society's prevailing presumption that cancer equals death. Many people cannot even use the word "cancer." The euphemisms resorted to are "illness," "health problem," "personal difficulties," etc.

In these 8 1/2 years, I have dealt with that initial assault and countless other would-be fatal signs. Some were minor, some weren't -- in 1986, a feeling in my right abdomen that seemed like a node; in 1987, a fever that lasted four weeks and seemed to be a sure indication of massive recurrence; in 1987, the node.

On and on. A pain here. A pain there. A spot that shows up on a gallium scan but nowhere else. A spot that shows up on the gallium scan and is not there three days later. An unexplained this. An unexplained that.

Physical checkups every three months. Full-range checkups every six months. Painful bone marrow extractions at least once a year. Every one of them endured with the knowledge that "something" could be found that could eventually end my life.

Try it sometime. Go ahead, try it. And then tell me you don't understand.

Dealing with cancer requires a capacity sooner or later to concentrate on living rather than remain terrified about dying: After years of dealing with the dread, I learned. Swimming restored my sense of physical strength.

Competing at swimming at the national level put me in a mind-set that allowed me to accept the thought that I had indeed been rendered free of disease. All the subsequent checkups and molecular analyses have only confirmed that conclusion.

Thus, I can function. Thus, I can be a fully focused husband and father. Thus, I can run for president and say things other candidates shy away from.

I didn't give a damn about George Bush's 91 percent popularity. And I told the American people the hard truths about our economy, middle-class tax cuts, entitlements, gasoline taxes, replacement of striking workers, gay rights -- all certain to be controversial. And all were used against me.

So what? I felt that to be just another pandering politician would have been like spitting on my survival. The cancer freed me. It freed me.

So I have learned how to live. And to count each day. And to value that day. I am beyond terror because I have had more than enough of it.

I thank God my wife and I have been able to think positively and not allow these various false fears to ruin the last few years.

And I thank God that I had doctors whose attitude allowed us to do this. Facts? Yes, they gave all of them to us -- in 1983, when the cancer was discovered, and in 1987, when the node appeared, and today.

But black crepe? They didn't have any in my size.

Thanks to medical advances, there will be more and more cancer survivors. How they and society relate to each other will be a continuing story. Mine is only one of them.

If I should surface again politically, I will make available all my medical records for public inspection. If there is any remaining doubt about my records, I will submit to an examination by an independent group of doctors.

I will do it because I will have no choice. I will have to prove I don't have cancer, no matter how many years will have passed. And there will always be people who would never vote for me because of fears about a disease they dread.

In subtle ways, cancer survivors face similar considerations in everyday situations like job searches and personal relationships. When do you tell them? How much do you tell them? Do you believe they would ever understand? Would it change things?

We all are in the coping stage brought on by the cancer survivorship of more and more fellow citizens. But the old goblins will hang around for a long time. Our job is to shorten their stay.

Paul Tsongas was senator from Massachusetts from 1979 to 1984.

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