A Fight for Life in Washington

“It’s not the triumphant return to Washington that I envisioned. I never thought I would come back here with Jimmy Carter or with cancer—but here I am,” says Hamilton Jordan, 41. Once the audacious wunderkind who devised the strategy that carried a peanut farmer from Georgia to the White House, Jordan is undergoing experimental treatment for diffuse histiocytic lymphoma, a cancer of the lymphatic system, at the National Cancer Institute (NCI) in Bethesda, Md. Never really at home with the Washington establishment, which felt snubbed by his disdain for Washington ways, Jordan was trusted by President Carter, eventually serving as his chief of staff and as a secret diplomatic negotiator during the Iranian hostage crisis. When Carter lost the 1980 election, Jordan returned to Georgia where he was a distinguished visiting fellow at Emory University while writing his critically acclaimed Crisis: The Last Year of the Carter Presidency. Since 1982 Jordan has worked as a media consultant. Divorced from his first wife, Nancy Konigsmark, in 1978, he married Dorothy Henry, 29, a pediatric nurse, in 1981; they have a son, Hamilton Jr., born Feb. 15, 1984. In an interview with Washington bureau chief Garry Clifford, the former presidential aide gave this account of his struggle against the disease since it was diagnosed in September.

For about a week before I went to see the doctor, I kept experiencing the sensation of feeling flushed and having blood trapped in my head. I thought it was probably a circulation problem because of all the exercise I’d been doing, but I had a premonition, and it was about time for my annual checkup, so I decided to see my old friend and family doctor, Richard Hammonds. Everything checked out, but Richard was concerned about the slightly distended veins in my neck and insisted that I go down the street to Cobb General Hospital for an X ray.

I knew then something was wrong, and less than 30 minutes later I found out just what. By the time I got back to his office, he had the radiologist’s report. I had a mass in my chest which was pressing against the main artery and restricting my normal blood flow. Richard made an appointment the next day for a CAT scan and a complete diagnosis at Emory Hospital.

Because of all my experience with cancer, I knew the odds were overwhelming that it was a cancerous process. My father died at 67 of prostate cancer, and two and a half years ago my mother, Adelaide, was operated on for lung cancer. She has been beating the odds ever since. Driving home to tell Dorothy I remember being scared but not panicked. Two years ago we started Camp Sunshine in northern Georgia for children with leukemia and other kinds of cancer. We had both seen the disease at all stages.

The good news was that the CAT scan was clear except for the mass—the size of a small apple. Once that was determined, they put me through more rigorous tests and did a surgical biopsy. I was in the hospital for about five days. It’s funny; I started out with a sense of how bad it could be, thinking, “Hamilton, you’re in real trouble with this thing,” and my family started out on the other extreme—believing that it was just a bad X ray or maybe a tropical disease I had picked up in Vietnam, where I was a civilian volunteer in the ’60s. For Dorothy it had to be a nightmare—to be 29 and have a child and think that your husband has a possibly fatal disease. Having nursed kids who died of cancer, she felt the helplessness of how little a loved one can do. After a few days our emotions met somewhat in the middle.

About the third day in the hospital I had a visit from a friend who is a professional counselor. She sat down, held my hand and told me that people go through stages in dealing with disease. First there is denial, then anger, then there is bargaining with God, then finally a state of depression and despair, and out of that the patient ultimately accepts the disease. I told her I wasn’t trying to be argumentative, but that wasn’t the way I felt. To deny the disease was ridiculous. I had a mass on my chest. I’d seen the X ray. I wasn’t angry at anyone. That wasn’t productive. As for bargaining with God, well the god I believe in doesn’t have to negotiate with his Creation. As I told the psychologist, “What am I supposed to do, say that if God cures me, I’ll become a television evangelist?” I didn’t know if I wanted to be cured that badly or not. What I did know was that I had a problem and I had to solve it.

On the fifth day I was waiting in my hospital bed for the final pathology report. Everything hinged on that report. Would I have a type of cancer that was curable or not? I started flicking the TV channels when suddenly I heard the local CBS affiliate report that I was in Emory Hospital with an inoperable lung cancer. At first I was scared, thinking, “My God, maybe they know something I don’t.” Then I denied it, realizing that it was just the news, and nobody at CBS had talked to me, to anybody at the hospital or to my family. Besides it was two-thirds incorrect. I did not have lung cancer, and it was not inoperable. Of course it was more accurate than CBS has been about some things they’ve said about me.

A short while later my oncologist came in the room and gave me the facts. I had diffuse histiocytic lymphoma. Ten or 15 years ago that would have meant a death sentence, but tremendous progress has been made. I have a cancer of the lymph system itself. My tumor was strategically placed. If it had been someplace else it might have spread all over my body before I became aware of it. As it was, its pressure against my artery created a symptom that sent me off to the doctors early.

After I knew what I had, my first question was, “What’s the best treatment for lymphoma?” To my surprise and their credit, my Emory doctors encouraged me to call around and find out. I have a lot of doctor friends, and in 24 hours I had called seven or eight major medical centers around the country. A majority of people I talked with said, “If I had what you have, I’d go to the National Cancer Institute.” NCI has two protocols [courses of treatment] on my type of lymphoma that they are testing against each other. NCI said it would accept me in the program not because I used to be somebody important, but because I had the disease they were studying.

I told them I would be there the next morning. They offered to have someone pick me up at the airport, but I declined. “I just want to be treated like Joe Smith,” I told them. My reasons were selfish. During the Iranian hostage crisis I had had to negotiate with the Shah of Iran and his medical team in the logistics of his treatment for lymphoma. Though his kind was different from mine, I had seen firsthand how some doctors tend to overreact to public figures. In some instances they become too conservative and are not willing to take the normal risks required. Others become too aggressive and take too many risks. I didn’t want either extreme.

I arrived on a Tuesday morning and by Friday I’d had another bone marrow test, a spinal tap, a liver scan, liver and lymph node biopsies and a lymphangiogram, a delightful four-hour procedure in which they cut holes in your feet to inject a dye to illuminate your lymphatic system on X ray. In three days they confirmed the Emory diagnosis. I had an early disease. It had not spread. It was not in my bone marrow, not in my organs, not in my blood, not in my central nervous system. I had a very good prognosis.

Somebody told me early on that you’ve got to make your health your total preoccupation. That sounded right, but that isn’t the way it worked out. It is not easy, but you have to try to carry on life as normally as you can. We try to do that as much as we can for our little boy. In a sense I’m very fortunate. In the last three or four years I’ve been successful in what I’m doing. I’m lucky. I’m not a wealthy person, but I don’t have short-term financial worries, so I can get on with getting better. Our friends in Washington have made the three of us their top priority. Within a week of arriving they had located, rented and completely furnished a townhouse for us just a few miles from the National Institute of Health. I could just concentrate on getting well.

I received my first chemotherapy the day after I finished the tests. It was my 41st birthday and I had the option to wait. But thinking of all the cancer cells growing and spreading, I wanted to get on with it. You get the chemotherapy in a pleasant setting—everybody’s got cancer just like me and most people are baldheaded because of the treatment. But hair loss isn’t important. It will grow back. They sit you down in those little rooms and give you drugs. It takes about an hour and a half. There are a large number of people on both protocols, and over the course of several years the doctors will track these people and reach a conclusion on which treatment is better.

Random selection determined that I would receive the ProMACE CytaBOM treatment. There are eight different drugs in my protocol and each has some different and proven effect on cancer cells. I take prednisone days one through 14. On day one I get three other drugs. On day eight I get four more drugs. Then I skip two weeks and start over on day one. Using the drugs in combination has been found successful, which makes the side effects and complications worthwhile. For example sterility is a concern. Even if I’m not sterile you wonder what kind of genetic impact this could have on future children. We plan to have other children, and if we can’t have them naturally, then we’ll adopt.

The chemotherapy is debilitating. It knocks you on your butt, but generally I’ve tolerated it very well. There are dozens of side effects—but I haven’t experienced them all. Usually there is extreme and violent nausea, but I’ve not had that. I just made up my mind I was not going to be sick. Another drug—vincristine—makes you constipated, another makes you urinate frequently. I’m up all during the night. The prednisone causes mood swings, increases your appetite and gives you a puffy look. It also causes some redistribution of body fat and hair loss. Some of the drugs can affect your kidneys, heart and lungs, but the doctors monitor you very closely.

The odds favor me. They don’t favor the disease. My disease has over an 80 percent remission rate, and over 80 percent of those people stay cured. I think the best thing for cancer patients is to participate actively in their own recoveries; keep their bodies strong, eat well, exercise and try to have a positive attitude. I can’t say enough about a positive attitude. The doctors and nurses at the National Cancer Institute have never had cancer. They can take care of my body, but they haven’t the time or the understanding to help me deal with the reality of the disease or to worry about my mind. If you sit around expecting to die or expecting your cancer to come back, the chances are increased that it will. Each person has got to look within himself for emotional and spiritual resources to sustain a positive attitude.

I’ve read two books that have been very important to me. Norman Cousins’ book Anatomy of an Illness As Perceived By the Patient tells how he was given no chance to live and how he used a positive attitude. Another book particularly written for cancer patients is Getting Well Again by Dr. Carl Simonton, and it explains creative things in the whole area of positive attitude in curing cancer. Recently I volunteered to talk with some other cancer patients. It’s not like I’m an expert, but I’ve been though six or seven weeks of this. They have new patients coming in, and those patients have millions of questions that I can answer.

After only one-third of my scheduled cancer treatments, my tumor is completely gone except for a few slightly enlarged lymph nodes, which may well be scar tissue. My doctors say my response to chemotherapy has been dramatic: My last treatment will be in January. I may not be cancer-free now, but I’ll certainly be free by then. Then we’ll go home to Lawrenceville, Ga. They will watch me for two or three years very closely to be sure it doesn’t come back. And it won’t come back. If it does—we’ll deal with it.

I wrote my friends about the unforgettable day I found that my tumor had disappeared. I had driven home like a madman to share the good news with Dorothy and found her waiting anxiously in the front yard with Hamilton, who was riding his electric car on the sidewalk. We hugged and cried over our good news. She rushed out and bought some Haägen-Dazs chocolate/ chocolate chip ice cream (which we devoured) to celebrate. After our little party we got in the car and drove to a nearby church. The chapel was closed, but the recreation center was overflowing with children at a Halloween party. We found a statue of Jesus and Mary on the lawn of the church, and with the squeals of laughing monsters and witches in the background, Dorothy, little Hamilton and I got down on our knees and thanked God for our many, many blessings.