Hamilton Jordan was chief of staff in the Carter White House

[RandyW]

Winning Over Cancer

By Hamilton Jordan

Wednesday, May 21, 2008; 1:00 PM

Carter White House Chief of Staff Hamilton Jordan died yesterday. He wrote about his battle with cancer for The Post's Outlook section on Jan. 26, 1986.

I am lying in my hospital bed in Atlanta. I have been here for five days, have had a surgical biopsy and every test in the book, and now it all comes down to a man in a laboratory somewhere looking at my tissue through a microscope, deciding what kind of cancer I have and whether I will live or die.

My mother and sister make small talk. I find myself knotting the bedsheet around my hand. Just to escape, I turn on the television. I am startled to see a picture of myself and catch the line . . . "CBS News has just learned that former presidential aide Hamilton Jordan is in Emory Hospital and has been diagnosed as having inoperable lung cancer."

Panic grips me, then rational thought returns. If my doctor doesn't know what I have, how in the hell can CBS News know?

This stimulates me to consider having a different medical team. Dr. Lesley Stahl of CBS could make the tough diagnosis. Cool and calm Sam Donaldson of ABC could perform the delicate biopsy. Godfrey "Budge" Sperling of the Christian Science Monitor (who has put me to sleep a couple of times before) could be my anesthesiologist. And columnist Robert Novak could administer the harsh chemotherapy.

Suddenly, my room is flooded with doctors. I try to read them like a jury -- two are smiling, the others are not.

One, a friend, smiles and says, "Hamilton, whenever two or more doctors rush to a patient's room, it's good news!"

"All I ever wanted was a fighting chance," I say.

"You've got better than that," my oncologist replies. "You have diffuse histiocytic lymphoma. Ten or fifteen years ago, this would have been a death sentence, but this is an area of cancer research where tremendous progress has been made. Your disease is localized. We caught it very early and your prognosis is very good."

I sigh with relief. I might still die, but I don't have to die.

It had started the week before -- just after Labor Day -- when I experienced the feeling of having blood trapped in my head. My doctor, Richard Hammonds, knew something was wrong the minute I walked into his office. "Hamilton, your face looks awfully flushed!"

My physical was normal but he sent me down the street to the hospital for a chest X-ray. When I returned, he looked grim.

"You have a mass in your chest which is pressing against your main artery and restricting your normal blood flow. That's why you have had this flushed feeling. I don't like the sound of it." He advised that I go into Emory hospital the next day for a CAT scan and diagnosis.

I asked about the possibility of cancer.

"I hope that it is not a malignant tumor, but if it is, it would be best if it were primary. If this has spread from somewhere else, we could be in real trouble."

On the long drive home, I am scared but not panicked. A strange kind of inner peace gives me the feeling that everything is going to be all right.

My wife Dorothy is shattered. She tries to be brave, but I can feel her fear. I realize that it is tougher being the loved one than the patient -- your family feels totally helpless.

I look at little Hamilton and wonder if I will be around for his second birthday. I fight back tears and am thankful that he isn't old enough to understand that something is bad wrong with his daddy.

We spend the evening on the phone.

"Maybe it is something you caught in Vietnam," my mother offers.

"It could be benign," says my sister.

"You hear all the time about X-rays being wrong," my brother says.

I choose to look at it the other way. This is definitely serious, I think, probably cancerous. Later, I roll over in bed and hug Dorothy. "We are in God's hands," I say. "And we always have been," she replies.

I check into Emory for tests. Resolving to be brave for my family, I spend the next several days cracking jokes, trying to find humor and joy in the bizarre hand that fate has dealt us. The third day at the hospital, a professional counselor who is a personal friend sticks her head in the door and says, "In the mood for some company?"

She sits on the side of the bed, clasps one of my hands and says, "I have been thinking about you and praying for you."

I say, "I appreciate those prayers but I'll trade them right now for some good advice on how to get my head straight."

She tells me about the stages that most people go through when confronting a serious illness: denial, anger, then a stage when they try to bargain with God by making a promise that if they are allowed to live, they will do something specific with their lives.

"Finally, patients become depressed and out of their feeling of despair they face reality. This is acceptance," she says.

"Look," I say, "I'm not trying to be different and maybe I am just hiding behind an emotional mask, but what you describe is not the way I feel. Denial? Deny what? I've got a mass in my chest the size of an apple. Angry? At whom? I have lived a great life and have been blessed with much more than I deserve. Bargaining with God? The God that I believe in has all the cards . . . I don't think that God has to sit down and negotiate with his Creations. What am I supposed to do -- say that I will be a television evangelist if I am cured?"

She smiles.

"I don't know if I want to be cured that badly," I add with a grin.

"Hamilton, you have totally blown my nice model and obviously you have already accepted the reality of your disease."

"Well, is that okay?"

"It's terrific."

With my diagnosis final, it was time to begin treatment. But what is the best treatment?

A top doctor at the National Cancer Institute in Washington told me that they were getting 88 percent of their non-Hodgkin's lymphomas into complete remission and that 80 percent of those in remission were cured. I did some quick multiplication on the back of an envelope, "That means you have about a 70 percent cure rate?"

"That's right, and if your disease is as localized and is as early as you describe it, your odds could be slightly better."

I asked about having the NCI lymphoma protocol applied at Emory.

"Emory's an excellent medical center. But I would want to have it administered at the place where it had been developed."

Once I got to NCI , I was put on an accelerated batch of tests. "We are going to work your *ss off, Mr. Jordan," one doctor teased. And they did. In two-and-a-half days, I had a spinal tap, a repeat bone marrow, constant blood work, a liver scan, a spleen scan, a brain and bone scan, a lymphangiogram (a delightful, four-hour procedure where they cut holes in your feet to find a lymph node through which they inject a dye which illuminates your lymphatic system on X-rays), physical examinations and oral histories and finally a liver biopsy which was monitored by a scope inserted into my abdomen by an incision through my belly button.

NCI confirmed the Emory diagnosis. The cancer was confined to my lymphatic system. But in addition to the mass in my upper chest, there were two nodes below my diaphragm with early signs of disease.

"Is that bad?," I asked my doctor.

"No, we'll just zap it with chemo and be sure it is gone."

The head of the medical team came in while I was eating dinner. "You have a choice, Mr. Jordan, we can begin your chemo tomorrow or wait until Monday."

"Tomorrow (Sept. 21) is your birthday," Dorothy said.

I had no intention of giving my body the weekend off while the cancer cells grew and spread.

"Let's get on with it," I said, trying to sound brave.

By random selection, it was determined that I would receive the PROMACE-CYTOBOM protocol which was being tested against another protocol in treating lymphomas. There are eight proven drugs in this protocol and each has some different and usually fatal effect on cancer cells. In the course of killing the cancer cells, they also destroy some of the body's healthy cells.

A doctor at Emory had given me a lecture on chemotherapy: "If you expect to get sick from chemotherapy, you will be sick, probably very, very sick. But if you can develop a positive attitude about your chemotherapy, try to regard it as your friend which is going to cure you, then the chances are that you will tolerate the chemo better and may not be sick at all."

In the abstract, it sounded good, but I was scared. I had seen too many cancer patients wandering the halls, stopping to use their plastic nausea trays. I had heard stories of people who develop "anticipatory nausea" and throw up when they walk in the clinic just at the thought of their chemo, and horror stories of people who vomit for several days after each treatment.

My primary doctor brought in the consent forms for me to sign. "Before you sign, I have to inform you of potential side effects and risks. You want generalities or details?"

"I had rather have the details so I can spot any side effects," I said.

The details included the possibility of redistribution in my body fat, mood swings, appetite increases, vomiting, hair loss, damage to my bone marrow, heart, liver and lungs, mouth ulcers, frequent urination, bladder irritation, constipation, and, says my doctor, "'neuropathies' which will include jaw pain and numbness or cramps in your fingers and toes. These neuropathies are not permanent."

"Great," I say sarcastically.

"ARA-C causes . . . ."

"Doc, stop! I've heard enough. All this is doing is scaring me. Are these drugs going to kill my cancer?"

"I believe they will," he says.

"Are they going to kill me?"

"No."

"Let's get on with it then," I say.

I waited to be sick but by six o'clock I was eating yogurt. After Dorothy left the hospital, I had trouble sleeping and sneaked outside the hospital to enjoy the cool evening breeze and the stars. I had dodged the bullet that day and was grateful. I wondered how much of it was just luck and how much of it had been my determination not to be sick.

With the first treatment behind us, Dorothy and I tried to develop a normal routine. But there was always something to do medically that reminded us that I had cancer.

There were several different medicines to take every morning and evening. I had to take my temperature four times a day to spot any signs of early infection. I had to rinse my mouth out with a special preparation six times a day to reduce the occurence of mouth sores and fever blisters and apply a special fluoride treatment to my teeth each night to ward off decay, which is aggravated by the chemotherapy. Sleep was precious; a bladder irritation caused me to get up every hour or so during the night. But I learned to cope with all of this.

In addition, there were two or three visits to the hospital every week for routine blood counts, X-rays and my chemotherapy treatments. Having cancer can become your full-time job and preoccupation. But I was determined not to let that happen.

I started to focus back on my work and found myself able to forget that I had cancer. The chemo reduced my energy level to maybe 80-90 percent of normal, but most days I felt good. I started back jogging the day after my first chemo treatment and have been running two or three miles a day. Just the fact that I could get out and do this and feel the wind against my face and sweat on my brow gave me a tremendous psychological boost.

We worked hard to have a normal homelife for our little boy. Dorothy refocused on some of her regular projects. Things seemed pretty normal.

But they were not normal.

I knew that I was receiving the best medical treatment, but as the days passed, it became obvious that my doctors were not doing much to help me emotionally. I understood -- there simply was not time for them to play both medical doctor and emotional therapist.

In response to my question as to what can I do to help in this battle, one doctor said, "Just hang on!"

Well, I was not content to just hang on. I believed that there was much that I could do to assist in a return to full, good health. I realized that I was going to have to look within myself and my own emotional and spiritual resources to develop a positive attitude.

An obvious starting point was to talk to other cancer patients. They -- not the doctors or nurses -- were the only ones who really understood what I was going through. I began to seek out cancer patients when I went to NCI.

The patients who were withdrawn and seemed depressed didn't even want to talk and were obviously just "hanging on." One man about my age cut me off: "Look, I've got my problems and you've got yours. Just leave me alone!"

But there were others who were talkative, laughing and extroverted. They had come to grips with their disease despite poor prognoses. In more cases than not, these people were doing well medically and exceeding their doctors' expectations.

After only one-third of my chemotherapy treatments, my tumor mass was gone. The only thing left were a few slightly enlarged lymph nodes. My response to the chemo was "dramatic," in the words of my doctor.

I drove home like a madman to share the good news with Dorothy. We hugged and cried, then drove to a nearby church. Dorothy, Little Hamilton and I got down on our knees and thanked God for our many blessings.

Since that wonderful evening I have finished my treatments at NCI, and I was told earlier this month that I am in complete remission with an excellent prognosis.

When I got the news that I would have a full life ahead of me, I talked to my family and my friends, I prayed, and I made the decision to run for the U.S. Senate from my home state of Georgia.

I feel this is a campaign we can win but, more importantly, I know now if we lose, it will not be the end of the world. I have had had an experience which has shown me the value of faith, family and friends and it has given a new clarity to the way I live.

Hamilton Jordan was chief of staff in the Carter White House.

[jaminkw]

22-yr survivor. Inspirational stuff but wish it had been advanced lung cancer. No, really, it was a great read.

Judy in Key West