“I’ve gotten to know a hell of a lot about cancer,” says Hamilton Jordan. The maverick strategist, who masterminded Jimmy Carter’s presidential campaign and became his White House chief of staff has learned his lessons firsthand. In 1985 he was diagnosed with histiocytic lymphoma, a non-Hodgkin’s lymphoma that he is certain he contracted by being exposed to Agent Orange when he worked as a civilian volunteer in South Vietnam between 1967 and 1968. It was ironic in that in 1982 he and his second wife, Dorothy, a former pediatric nurse, had founded Camp Sunshine, a summer retreat outside Atlanta for kids with cancer. In 1986, after an aggressive five-month course of chemotherapy, Jordan’s cancer was in complete remission.
Feeling fit, Jordan ran unsuccessfully for the U.S. Senate from Georgia in 1986 and in 1992 managed Ross Perot’s brief presidential campaign for a time. He was developing a consulting business last summer when doctors told him he had prostate cancer, a diagnosis that 300,000 Americans will receive this year. The prostate gland is a walnut-size organ, beneath the bladder in males, which produces some of the fluid in semen. Although one in five men will be stricken with prostate cancer, the diagnosis can be confusing because in some the cancer grows so gradually no treatment is ever warranted. The more aggressive forms of prostate cancer have traditionally been terrifying because men who survived the disease and its treatment often had to cope with incontinence or impotence. Research continues on ways to differentiate between the slow and rapid growing cancers.
Thanks to early detection, state-of-the-art surgery and a passionate commitment to taking charge of his own medical care, Jordan, 51, who had his prostate removed in September, now seems once again cancer-free. “Cancer is a bizarre blessing that’s given purpose and focus to my life,” he says. Relaxing in the large-contemporary Atlanta home he shares with Dorothy, 39, and their children Hamilton, 12, Kathleen, 7, and Alexander, 4, Jordan spoke with Washington bureau chief Garry Clifford.
I ALWAYS KNEW I MIGHT BE A CANDIDATE for prostate cancer. My father died of the disease, my mother’s father had it, as do my uncles on both sides of the family. So given that history, I’ve always been aggressive about the things I’m screened for. About seven years ago, I heard about the PSA [prostate-specific antigen] blood test and began having one annually [the PSA enzyme is produced by the prostate, and its production often increases with cancer]. Every year I would also have a digital rectal exam. I knew that if both tests are normal, the odds are overwhelming that you don’t have prostate cancer.
In the last couple of years, though, my PSA started to go up. It was still in the normal range for my age, but because of my family history I decided to get tested every six months. I’m glad I did. I was on vacation last July with Dorothy’s family in North Carolina when the nurse called from Atlanta with the results of my latest PSA. She said, “You have nothing to-worry about, it’s in the normal range.” I knew it wasn’t. It had increased in the course of a year, and that was abnormal. I had a premonition something was wrong.
Instead of going to work the next morning, I flew to Knoxville, Tenn., to see a urologist and had a biopsy of my prostate done. After the procedure, I returned to North Carolina that day. It was our next-to-last night there, and Dorothy had gone to bed early. Around midnight I was sitting on the porch with her sisters, and I said, “I’m going to get some test results tomorrow, and I’m going to need you to rally in the morning because the news is going to be bad.” They tried to reassure me, saying, “Whoever heard of anyone your age having two kinds of cancers?”
The next morning Dorothy sensed something was wrong. Finally, I broke down and told her I thought I had prostate cancer. The toughest thing was having to put her through it again. About a year after my first cancer, both her parents were killed in a car accident. Plus, being the loved one of a cancer patient is more difficult than being the patient. They have to sit and watch their loved one go through pain with very little they can do. But like her sisters, Dorothy’s hunch was that I was overreacting. She gave me a big hug and said, “No matter what happens, we have a guardian angel looking after us.”
My doctor called about 10 in the morning and told me the test was positive. He told me I needed a CAT scan and a bone scan to see if the cancer had spread. If it had, it would mean I had an incurable disease. When my father was diagnosed with prostate cancer, I saw a scan of his whole skeleton, and he had 30 or 40 lesions. It looked like a Christmas tree with all these little bulbs all over his body. I was thinking, “I’m not going to be here very long.” I was worried about Dorothy, but particularly about my kids. With my first cancer, I had done research on childhood memories and learned that children under the age of 4 have only the vaguest memories of lost parents, and those under 7 have only a few specific ones. I couldn’t stand the thought that my younger children might not remember my face or my laugh or my love for them.
I flew to Knoxville again for the scans. Finally the doctor arrived and said, “The bad news is that you have prostate cancer. The good news is that we probably have caught it early.” Dorothy later told me my behavior seemed bizarre. I had just discovered I had prostate cancer, and I came home as excited as could be. But I had gotten up that morning thinking I might die. Then I found out I would probably live. That was something to celebrate.
Johns Hopkins has one of the best urology programs. The head doctor there, Patrick C. Walsh, is the creator of a technique (now 10 years old) to re—move the prostate that has a high cure rate, prevents incontinence and gives many men a chance of salvaging their sexual potency. By Tues., July 25, I had an appointment with him, and we scheduled the operation for Sept. 4. There are other approaches, such as radiation or radioactive implants. You can have five doctors argue either side, but for a person with a life expectancy of more than 10 years, surgery is the best option. I would rather go through five surgeries than do chemo. Taking the prostate out is difficult, intricate surgery, but it’s a home run. Being relatively young, with three kids, I had to go for a cure. Potency doesn’t do you much good if you’re dead.
The operation, which lasts two to four hours, is major surgery. They cut through the abdomen, cut the urethra off and reattach it to the bladder. I was given an epidural and was largely awake during the surgery. Five days later, I came home. The most bothersome thing was the catheter I had to wear for about three weeks, but you get used to that too. I was weak at first and started walking laps around the pool for exercise. I got up to a couple of miles.
I don’t want to paint an excessively rosy picture, but if you have a good surgeon the problems with incontinence are rare. After the catheter came out, I wore an adult diaper for one day, and since then I’ve been 100 percent continent. I was sexually potent within months. When you remove the prostate, you don’t lose your sex drive, you lose your ability to have an erection, but it gets better over the passage of time. As far as getting tested, I had a PSA to see if any cancer remained. I’ll have that test taken every six months for the rest of my life. That’s the only way they can track your cancer. Doctors tell me my prognosis is excellent.
Every lesson I learned from my first experience with cancer was amplified with my second. Sooner or later we all get a “bad report” that forces us to think about our mortality. I’ve worked with cancer patients for years, but now I’m determined to find a way to make a difference, like getting active in support groups. I’ve never felt sorry for myself. I’ve never said, “Why me?” I’ve turned it around and said, “I’m lucky.”