The cancer freed me

PAUL TSONGAS

May 07, 1992|By Paul Tsongas

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.

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