Chapter One: Part One
FIRST TIME AROUND
I remember it like it was yesterday.
I was lying in my hospital bed. My doctor had just left to review the tissue report with the pathologist...he promised to come back within the hour. I had been in the hospital now for five days and had had every test in the book. And it all came down to a person sitting in a laboratory somewhere peering into a microscope at my cells and deciding what kind of cancer I had...and whether I would live or die. Would it be curable, or even treatable? Would I have a fighting chance, or be left to hope for a miracle, racing around the world to off-beat clinics searching for a cure?
My dear mother and sister made small talk to pass time. A nurse's aide brought in a form for me to fill out evaluating the hospital services.
"Have you enjoyed your stay, Mr. Jordan?" she asked.
"I'll tell you in an hour," I joked. She didn't understand.
I found myself knotting up the bed sheet in my hand. The emotional mask that I had been wearing for my family's sake was close to being shattered. Just to escape, I turned on the television and surfed from channel to channel, hoping to be distracted, and was startled to see a picture of myself on the local CBS affiliate. I turned the volume up in time to hear, "CBS has learned that former Carter aide Hamilton Jordan is in an Atlanta hospital and has been diagnosed with inoperable lung cancer."
Panic gripped my body as I looked at an old photo of myself on the television screen and these strange words sunk in.
My mother's face dropped and my sister watched me closely for a reaction. Then logic returned. If my doctor, who just left my room, didn't know what I had, how in the hell did CBS News know? Like so many other times, the media had only half the story right.
The panic caused by the news report subsided as we continued to wait. Suddenly, my room was flooded with doctors: the oncologists, my pulmonary specialist, the radiologist. I tried to read them like a jury...one was smiling slightly, the others were not. What did it all mean?
The radiologist broke the ice. "Hamilton, when more than one doctor comes into your room, it is usually pretty good news."
"All I ever wanted was a fighting chance."
"Well, Mr. Jordan," my lead doctor said, "you certainly have that." He paused, glanced down at a written report and looked up. "You have diffuse histiocytic lymphoma. Ten years ago, this would have been a death sentence, but this is an area where we have made progress...there are a number of treatments that are reasonably effective in dealing with this disease."
I stuck on one word. "Reasonably, doctor? What does that mean?"
"This is one of those 'good news, bad news' situations. The bad news is that you have a very aggressive cancer. The good news is that aggressive cancers divide rapidly, which means that they are particularly vulnerable to chemotherapy and radiation at the time of cell division. We've got to find a treatment your cancer will respond to."
He went on to tell me that I would need to undergo further tests, but that the evidence at this point was that the cancer was confined to my chest area. "We plan to radiate your chest. The bottom line is that we have a good shot at curing this."
That was too vague, and I learned for the first of many times that cancer patients should only ask questions if they are prepared to hear the answer. "What is a 'good shot,' doctor?"
"Well, every patient is different...."
"Just quantify it for me!" I interrupted.
"I don't like to use numbers, Mr. Jordan, but if you insist...."
"I do," I said firmly.
"About half of the patients who have non-Hodgkins lymphoma would achieve a remission with the therapy we will give you. Half of those will be free of disease five years out."
I was doing the math in my head. "So overall, I have about a 25 percent chance of being in the group that obtains a remission AND is cancer-free five years later?"
"That's about right, Mr. Jordan."
I was devastated to hear my chances of being alive reduced to statistics, but I had asked for it. And from that point on, I insisted that doctors avoid vague terms and quantify my situation. When the stats were favorable, I believed them and clung to them. When they were discouraging, I either tossed them aside or made up my mind to be one of those who beat the odds.
But when the doctors left my room that afternoon, I was faced with the cold, harsh fact that the odds greatly favored the cancer winning this battle, not me.
I didn't sleep much that night.
The story had actually begun on August 24, 1985, a day frozen forever in my memory.
I knew something was wrong when my family doctor sent me to the hospital for my annual chest X ray, which he had routinely taken in his office for fifteen years. A couple of hours later as we sat in his office, he talked quietly on the phone to the radiologist. I strained to hear, but all I could make out was, "I understand, yes...I understand."
He hung up the phone, turned away as if to avoid contact, slid the X rays out of the large brown envelope, turned them upright one by one and lined them up on the illuminated viewer. What had taken him seconds seemed like hours. He took a deep breath, pointed with his finger to a smoky area on one film and said slowly, "Hamilton, I hate to tell you this, but you have an abnormal chest film."
He paused to watch me as his words sank in. "This spot here is some kind of mass...some kind of growth."
"Could it be a cancerous growth?" I asked quietly.
"Yes," he said slowly, picking his words carefully, "and most likely it is a cancerous growth, but we will not know for sure until we take a biopsy."
I was stunned and just sat there, staring at the film. I felt like someone had suddenly pulled a plug and all the energy and feeling were flowing from my body. I had a surreal sense of standing apart from this bizarre scene and watching myself sitting in the examination room, talking with my doctor friend, asking the predictable questions:
"Do we know for sure it is cancer?"
"What kind of cancers would grow in that area?"
"What can I do?"
"Will I live?"
After he had repeated six or eight times, "We won't know any more until we do the biopsy," I stopped asking questions and was ready to go home.
My doctor kindly offered to drive me home so that he could tell Dorothy, my wife. I thanked him but said that I wanted to be alone.
I was barely out of the parking lot when Dorothy called on the car phone to report something cute our eighteen-month-old son, Hamilton Jr., had said. Later, she would tell me that she had sensed something different in my voice. "What's wrong?" she asked.
This was not the way to tell her, I thought. I needed to be able to hold her in my arms, comfort her and be comforted, but I couldn't hold back. I needed her to know and simply blurted it out: "Richard found a mass in my chest and thinks it's cancer!"
Dorothy was shattered. She tried to be strong and brave for me, but I could feel the fear oozing out of her every pore. For the first of many times, I realized that it is often more difficult to be the loved one than the cancer patient.
I will never forget taking Hamilton Jr. for a walk in his stroller that same afternoon. I welcomed getting away from the house and from Dorothy and having time to think...but I could only think about him. I stopped, picked him up, and hugged him as I cried softly so as to not scare him. Would I live to see his second birthday? Or his third? I fought back tears every time I looked at him and was thankful he did not understand that something bad was going on with his "da-da."
Dorothy and I spent the evening on the phone alerting family and friends...these were terrible calls to make. Everyone tried to be optimistic and struggled to say the right thing.
"Maybe it is just a virus you caught in Vietnam," offered my mother, who was battling lung cancer herself.
"It could be benign," my sister suggested.
"You hear about mistaken X rays all the time," a close friend said.
While my family was filled with wishful thinking, I chose to look at it differently. This was definitely serious, probably cancerous, and the big question was whether or not it was curable. I started off thinking that my chances were not very good while my family was hoping and praying for tropical diseases and mistaken readings of my film.
I checked into the hospital the next morning for a complete battery of tests. It would take a couple of days. I resolved to be brave for my family. If I fell apart, I would be no good for myself or for them. I hid my very real fears and spent the next several days cracking jokes and trying to make the best of a miserable situation.
While I was waiting for the report from the biopsy, a friend who happened to be a professional counselor stuck her head through the door. "In the mood for some company?"
"You bet...am I glad to see you," I replied.
She sat down on the side of the bed, grasped my hand, and -- fighting back tears -- said, "I have been thinking about you and praying for you."
My first thought was that she was going to have to pull herself together before she could help me. "I appreciate your prayers but right now I would gladly trade them for some advice on how to get my head straight. We've been on a roller coaster, and I have to settle down and live with this thing, whatever it is."
"Hamilton, the best thing you can do is to understand the various stages people go through when confronting a serious illness."
I nodded. That made sense.
She continued: "Most people deny their illness initially. They hope that they will wake up the next morning from a bad dream. They refuse to face reality by denying reality.
"The second stage is usually anger," she continued. "People get mad at the world, at their family members, themselves and at God. They ask, 'Why me? What have I done to deserve this?'
"Next, people usually bargain with God by making a promise that they will do something worthwhile with their lives if they are allowed to live."
"Finally, patients become depressed, but out of that feeling of despair, people ultimately face their reality. This is acceptance -- when a person puts aside his anger and denial, looks squarely at his problem, accepts and deals with it."
"Look," I said, "I'm not trying to be different and maybe I am just hiding my real feelings, 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. I have seen it on the X ray, know it's there...so there's no use in denying it. Angry? At whom? I have lived a great life and have been blessed with much more than I deserve. I don't want to die, but if I died tomorrow, I wouldn't have much room to complain. I don't know 'Why me?' but 'Why not me?' Maybe God gave me this disease because he thinks that I am strong enough to handle it."
"Bargaining with God?" I continued. "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?"
"I don't know if I want to be cured that badly," I added with a grin.
"Hamilton, you have totally blown my theory and obviously you have already accepted the reality of your disease."
"Is that okay?" I asked.
"It is terrific!" she said as she bent over and gave me a big hug. "It's terrific!"
LEARNING ABOUT CANCER...THE HARD WAY
Unfortunately, I know a hell of a lot about cancer.
Back in 1975, on a beach vacation with my parents, my father had complained of sharp pain in his hip, which he dismissed as "arthritis." Weeks later, my mother called to report that my father had been hospitalized with something she would only describe on the phone as "serious." I rushed home and went directly to the doctor's office. He held my father's bone scan against a light, revealing a perfect outline of his skeleton with what looked like twenty or thirty spots sprinkled across his frame. His body looked like a Christmas tree strung with white lights.
"Those are 'hot spots,'" the doctor explained. "Each of them is a cancerous growth in the bone. I'm sorry to have to tell you this, but your dad has metastatic prostate cancer."
I bombarded him with questions....How did this happen? What was his prognosis? Was it curable? Would my father die?
"Sometimes we find a lump in a man's prostate gland during a physical. We do a biopsy. If it's cancer and there's no evidence of spread, we take the prostate out. If we are lucky, that's the end of it. The poor patient is impotent and incontinent as a result of the surgery, but he has a chance for a full life. Often, by the time we feel the lump in the prostate the horse is already out of the barn in many patients; the cancer has spread, and -- like with your dad -- it is already in the bones. Once the cancer escapes the prostate, it is incurable."
Soon afterwards, my father began his treatment, had his testicles removed and began taking female hormones, a course of treatment that usually puts prostate cancer into remission for a period of time. His was a textbook case as he enjoyed two years of quality living, learning even to joke about the enlarged breasts that resulted from the female hormones. Then, as they almost always do, the hormones lost their effect and the cancer came roaring back in his bones. He died within the year.
But it was at Camp Sunshine that I really learned about cancer and the enduring lessons of life.
Shortly after we married and several years before my first bout with cancer, Dorothy -- a pediatric oncology nurse -- organized Camp Sunshine, one of the first non-profit camps in the country for children with cancer. New to Atlanta, Dorothy was a dynamo: raising money; recruiting campers from reluctant parents not inclined to give up their sick children for even a week; recruiting volunteer counselors; organizing a sophisticated medical clinic fully staffed by pediatric oncologists and nurses from Emory; and organizing an outstanding camp program for these special children.
It was a major undertaking. Early on, I tried to help a little too much, second guessing some decisions she had made. Dorothy told me in no uncertain terms to back off, that this was not a political campaign but her project. I did, and ever since, Camp Sunshine has been Dorothy's volunteer project with my playing a minor, supportive role. (I am the perennial MC for Talent Night...one year I was M.C. Hammer-ton and another time, Judge Ito.)
We started with only thirty-eight campers and twenty-five volunteers. Today, Camp Sunshine has a year-round program for over four hundred children and their families: two weeks of summer camp, a family weekend that addresses the problems that affect the siblings and parents, a ski trip to Colorado for amputees and the physically challenged, a trip to Washington for our teenagers, an "Outward Bound" program and many other activities. Camp Sunshine has had a major impact on our lives, especially by giving us the opportunity to witness time and time again dramatic demonstrations of the power of the mind and attitude to alter the course of disease.
My favorite memory is of Corey Grier, a good-looking black teenager. A natural leader with a ready wit and generous spirit, Corey drew boys and girls of all ages to him like a magnet. He also had a tough cancer in his colon and battled it with great courage for several years. Finally, the tumor got the upper hand.
In July 1985, the doctors told Corey he had a short time to live. Corey calmly told his doctors that he intended to live until June (1986) so he could return to Camp Sunshine to tell his friends goodbye and celebrate his seventeenth birthday that same week. The doctors humored Corey, but told his parents that he would be lucky to make it to Christmas and would never live to the next summer.
Eleven months later, a gaunt but smiling Corey was airlifted to Camp Sunshine on a helicopter to celebrate "Corey Grier Day." The campers held up hand-made signs, clapped and yelled excitedly as the helicopter touched down on the football field. Everyone crowded around Corey, reaching out to touch him or to slap a "high five." Several older campers lifted him carefully from the chopper and carried him gently to a specially decorated golf cart.
Surrounded on all sides by counselors and campers, Corey looked like the Pied Piper as he led the crowd to the lodge where we celebrated with ice cream, cake, and stories. Corey stayed for only a few hours but had a great time. As he rode back to the athletic field, he was talking a mile a minute, emotionally exhilarated from his visit. He even told one camper that he might live until the next Camp Sunshine. As Corey was hoisted into the helicopter, the harsh reality of the moment sunk in. The chopper paused about twenty feet from the ground and did a "360" so that we could all see Corey's smiling face one last time before he disappeared in the blue summer sky. We waved and waved, hoping that our forced smiles hid our tears. By the time the chopper was out of sight, several hundred people were wiping their eyes and hugging one another.
Corey returned to Egleston Hospital that night, celebrated his seventeenth birthday the next morning with his family and some favorite nurses, and died peacefully that afternoon.
Corey's story is just one of many of the brave children who have touched our lives in indescribable ways. They have taught us how to live and sometimes have shown us how to die.
With my biopsy behind me and my diagnosis complete, it was time to begin treatment. But what was the best treatment? My doctors told me that they could treat me locally. But was there a doctor out there somewhere who was having remarkable success curing people with my type of lymphoma?
In what I would later come to believe was one of many small miracles in my life, a doctor friend flew in from out of town just to be with me. I was counting on him to calm me down, to tell me everything was going to be okay.
Instead, he shook me up. He put his hand on my shoulder, and simply said, "Old friend, you have got to take charge of your own medical care."
"What?" I said. "Here I am worrying about dying. Don't I have enough to think about with my young wife and baby...and you wander in here and tell me I have got to be responsible for the medical decisions?"
"That is exactly right!" he shot back. "Tell me who has a greater stake in the decisions that have to be made than you do?"
The minute he said it, I knew he was right, and from that moment on, I did take charge. The stakes were too high....I could not afford to be passive. I had to have the peace of mind of knowing that whatever treatment I received was the best available.
I shared my candid feelings with my own doctor that afternoon. He agreed to help me explore all my options. That night, I gave an orderly twenty-five dollars to sneak me out of the hospital and wheel me over to the library. In a few hours, I knew a hell of a lot about diffuse histiocytic lymphoma. While there was much I did not comprehend, I was able to understand the broad challenges that faced me.
This kind of lymphoma was usually aggressive, was considered incurable until recently and had almost always spread to different sites in the body when it was diagnosed -- hence the name "diffuse." It was obvious from recent journal articles and clinical trials currently taking place that there were several centers in the United States that specialized in treating lymphomas.
In every article I read, "staging" the disease was critically important. A test known as the "lymph-angiagram" was essential to assess the spread of lymphoma and could even detect internal changes in an individual node that might indicate lymphoma. This old-fashioned, painstaking test required that a skilled technician find tiny lymph veins in each toe and "push" dye into the veins which would then show up on a scan.
When I asked my doctor about the lymphangiagram, he called it "outdated" and declared that it had been replaced by the CAT scan. "We don't have anyone here who could even do a lymphangiagram anymore," he explained.
The moment that he said that, I made a resolute decision to go somewhere else for my treatment. Within twenty-four hours, I had talked with five cancer centers around the world that were developing experimental treatments for non-Hodgkin's lymphoma. The name of the National Cancer Institute in Bethesda, Maryland, popped up time and again for their pioneering work on lymphomas. In my research, I would ask the doctor or nurse whom I was talking to, "What would you do if you had my disease?" A majority said that they would to go NCI...others mentioned NCI as one of several options.
I made contact with a doctor at NCI who told me that they were getting 60 to 70 percent of their non-Hodgkin's lymphoma into complete remission and that 70 percent of those in remission were cancer-free after several years. I did some quick math in my head. "That means that you have a 50 percent cure rate?"
"That's right, and if your disease is localized and early, your odds could be slightly better."
I asked about having the NCI experimental treatment given to me in Atlanta so I would not have to move my family.
"Look, Mr. Jordan, you usually have one shot at curing lymphoma. I would want to have my treatment administered at the place where it had been developed, especially when that place has the broadest possible experience in treating lymphomas. Why go for a reproduction when you can have the original?"
It was difficult to leave our Atlanta doctors and the community where we have so many personal and emotional ties. And it was a logistical nightmare to contemplate uprooting our little boy and leaving the comforts of home. But this was my life, and I had to take my very best shot. There is a lot of difference between a 25 percent chance of cure (which I had been offered locally) and 50 percent when you are dealing with your life.
"I'll be there tomorrow," I said.
While packing, I got a call from NCI with an offer to have a limousine pick me up at the airport. I told the well-meaning staffer that I appreciated the gesture, but that I didn't want or expect VIP treatment. "Spread the word up there, please, that I want to be treated like Joe Smith."
There were selfish reasons for my attitude. During the Iranian hostage crisis, I had to negotiate with the Shah of Iran and his medical team on the logistics of his treatment for cancer (ironically lymphoma) and had seen first-hand how doctors tend to overreact to public figures. In some instances, the doctors become too conservative and are not willing to take the normal risks required in dealing with a serious medical problem. On the other extreme, some tend to "overtreat" public figures, become too aggressive and take too many risks. I didn't want either extreme -- I simply wanted the best care that NCI would give an ordinary patient.
I had also seen the egos of doctors and patients result in less than ideal medical care. The Shah of Iran needed to have his spleen removed and insisted that Dr. Michael DeBakey, the great heart surgeon, perform the operation. Dr. DeBakey, who had not personally removed a spleen in years, took the Shah's spleen out. Later, the Shah died in Egypt of cancer and complications from the surgery.
Conversely, when President Reagan was shot, the White House doctor opted not to have "the best" doctors brought in but insisted that the doctors on duty in the emergency room who dealt with gunshot wounds every day treat the president. Some doctors credit that decision with saving the president's life.
Once I got to NCI, I was indeed treated like Joe Smith and put on an accelerated batch of tests.
"We are going to work your ass off, Mr. Jordan," one friendly young doctor teased. And they did. In two days, I had a spinal tap, a repeat bone marrow, constant blood work, a liver scan, a brain and bone scan, and a liver biopsy monitored by a scope that was inserted into my abdomen by an incision through my belly button.
And finally the lymphangiogram, the test they were unable to do in Atlanta that had motivated me to look around in the first place.
This is a delightful four-hour procedure where you have to lie perfectly still while they cut tiny holes in your toes to find a lymph vein through which they inject dye, which illuminates your entire lymphatic system on X ray. The lymphangiogram revealed one or two suspicious nodes below my diaphragm that were not enlarged but that looked "funny" in the words of the radiologist. If there was cancer in those nodes, it would totally change my "staging" (the extent of disease) and the treatment they would give me.
"We want to know the truth," my doctor said. "If there is cancer in your abdomen, we need to know so we can adjust our treatment accordingly. I want to stick a needle through your belly and sample these two nodes." He went on to explain that this was a slightly risky procedure as the nodes which he would biopsy were adjacent to a major artery.
"If you want to know, I want to know," I said quickly. In the short time I had been there, I had developed absolute confidence in the NCI medical staff.
After giving me a mild sedative and a local painkiller, the radiologist pulled out what he described as "my favorite Japanese needle," which was about two feet long.
I asked if I could watch.
"Only if you promise not to faint," he said as he moved the table around so I could clearly see the X ray monitor. He quickly stuck the needle in my abdomen.
"I promise not to faint if you promise not to stick that damn thing into my heart or artery."
He laughed and with sure, steady hands, probed and pushed until the tip of the needle was about a half-inch from the target node. "The challenge here," he explained, "is that this node is not firmly attached to anything. I have to spear it free-floating to get a good sample."
I wished he had not told me that, turned my head away from the monitor, and gulped a deep breath. Maybe I shouldn't feel so cocky. The thought had barely crossed my mind when I felt the needle move.
"Gotcha!" said the doctor.
I turned quickly to the monitor and saw the needle stuck in the node like a spear in a fish.
I breathed a sign of relief.
He quickly drew the sample tissue out of the needle, placed it in a vial, and held it up to the light.
"Mr. Jordan, I got a good piece of the bottom of this node, but I would like to get a piece of that other node if you'll let me. It is important to know what's going on in there."
Sounding more confident than I felt, I said, "Go ahead."
In another minute, he had penetrated the top of the second node and drawn the long needle out of my belly.
I shook his hand and thanked him. "With an aim like that, you must hunt birds!"
He shook his head. "I am a terrible shot."
"I wish you hadn't told me that."
It turned out that the lymphangiagram saved my life. The needle biopsy found cancer in one of the nodes in my stomach. This important new fact completely changed my staging and their treatment.
Without the lymphangiagram, I would have been staged a "1-A," which meant that the doctors believed the cancer was confined to my chest and could have been treated with radiation. I would have had my chest radiated, the mass would have probably melted away and for some period of time (my doctors guessed several months), we would have believed we had killed the cancer. But the cancer in my abdomen would have been unaffected by the radiation to my chest, would have spread throughout my body and greatly reduced the possibility of my achieving a remission or a cure.
I considered the fact that it had spread to my abdomen a tremendous setback. "How bad is that?" I asked my doctor.
"Not bad at all...at least we know now where we stand. We will zap you with this new cocktail. And it has been working pretty good. You have early disease, localized in your chest and abdomen, not in your blood or in your marrow. I believe that you can be cured."
The head of the medical team came in while I was eating dinner Friday. "We'll start your chemo Monday, Mr. Jordan."
"Do we have to wait?"
The doctor said that he was on duty Saturday and that we could do the first cycle then.
"Tomorrow is your birthday," Dorothy protested.
I gave her hand a squeeze and smiled. I thought about the cancer cells racing around my body while I ate birthday cake. I had no intention of giving my body the weekend off.
"Let's get started with it," I said, trying to sound brave about something that I didn't feel very brave about.
By random selection, it was determined that I would receive the PROMACE-CYTOBOM protocol, which was being tested in clinical trials against standard protocols in treating lymphomas. There were eight drugs in this protocol that would have some different and hopefully fatal impact on cancer cells. The good news was that by using them together in combination, there was a greater chance that they would kill all the cancer cells before any of the cells developed resistance to the drugs. The bad news was that in the course of killing the cancer cells, they also kill your body's healthy cells and are particularly rough on your blood components.
Because I had an aggressive lymphoma, my cells were dividing rapidly and were peculiarly vulnerable to chemotherapy. This meant that if the chemo worked at all, it could work dramatically.
The doctor told me that he would give me "almost lethal" doses of the drugs in order to kill the cancer and that he was willing to deal with any complications and side effects that might develop.
A doctor friend had given me a lecture on chemotherapy before I had left Atlanta. "If you expect to get sick from your chemo, you will get very sick. Do not assume the worst...prepare for the worst, but hope for the best."
In the abstract, it sounded good, but I was scared to death of these powerful drugs. I had seen too many cancer patients wandering the halls, stopping to use their plastic nausea trays. I had heard stories of people who developed "anticipatory nausea," who threw up when they drove by the clinic just at the thought of their chemo, and horror stories of people who vomited for days after each treatment.
My primary doctor brought me the consent forms to sign before I took my chemo. "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.
"On day one through day fourteen, you will take prednisone. It is a steroid. It will cause some redistribution in your body fat, can cause mood swings, and will increase your appetite."
"What are mood swings?"
"You might feel depressed one hour and exhilarated the next. We had one patient on prednisone who thought he was Jesus Christ!"
He continued. "On day one, you will get the following drugs intravenously: adriamycin, cytoxan, and VP-16. Adriamycin causes vomiting, hair loss and is harmful to your bone marrow. It can cause heart and liver damage but you will be closely monitored.
"Cytoxin causes nausea, hair loss, mouth ulcers, frequent urination, bladder irritation, and sometimes skin discoloration.
"On day eight, you will receive your second cycle of four drugs: vincristine, ARA-C, Bleomycin and Methotrexate. Bleomycin causes nausea, hair loss, bone marrow damage and can cause lung damage, although this is not common.
"Vincristine usually results in constipation and hair loss. You may experience 'neuropathies,' which will include jaw pain and numbness or cramps in your fingers and toes."
"Great," I said sarcastically.
"Enough!" I said, holding up my hand. "I've heard enough. All this is doing is scaring me. Are these drugs going to kill me or kill my cancer...or both?" I added as an afterthought.
"Mr. Jordan, they are going to kill your cancer for sure. The challenge is for them to kill every bit of your cancer, every cell...to leave the cancer so weakened that it can be cleaned up by your immune system. Along the way, they are going to play hell with your body and push it to the very limits, but we will monitor you very, very closely and deal with any problems that arise."
"Let's get started," I said as I signed the consent form and handed it back.
In a few minutes, the nurses had given me the anti-nausea drugs and had begun to give me intravenously the first "cycle" of the experimental protocol.
My favorite doctor walked into my room, smiled, and said, "Happy Birthday!"
I forced a smile. "Thanks for the presents," I said, nodding toward the IV.
He put his hand on my shoulder and squeezed me. "Mr. Jordan, I believe you are going to have many, many more birthdays."
"Do you really think so, doctor?"
"I really think so...and it is important that you think so too."
Although I felt wiped out and was heavily sedated from the drugs, the nausea never came. I waited and waited to be sick but instead felt better and better. My nurses were surprised.
"Unbelievable," a large, jolly nurse said. "You've got an iron stomach, Mr. Jordan."
By six o'clock, I was eating yogurt, calling my mother and siblings and celebrating my first treatment without horrible side effects.
Dorothy finally left the hospital after ten. I was exhilarated to be feeling good and had trouble sleeping. When no one was looking, I walked outside the hospital to enjoy the crisp breeze and clear fall sky. It was invigorating. I had dodged a bullet that day and was grateful. I wondered how much of it was just dumb luck and how much of it had been my determination not be to sick.
LIVING WITH CANCER
With the first treatment behind us, Dorothy and I tried to develop a normal routine and focus on life in the present tense. It was not easy; there was always something to do medically that reminded me that I had cancer. I had to take several different medicines 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 occurrence of mouth sores and fever blisters, and I had to apply a special fluoride treatment to my teeth each night to ward off the decay that was aggravated by the chemo. Sleep was precious as bladder irritation caused me to get up every hour or so during the night.
All of these little medical chores cumulatively did not take more than an hour a day, but they were a constant reminder of my illness. In addition, there were always two or three visits to the hospital each week for blood counts, X rays, and chemo treatments. I realized that having cancer could become your full-time job and preoccupation. But I was determined not to let this happen.
I started to focus on my work and found that I could still be productive. I could even -- for periods of time -- put the disease out of my mind. The chemotherapy had reduced my energy level to 30 to 40 percent, but on most days I felt pretty good. I started back jogging the day after my first treatment and got up to two or three miles a day. The fact that I could get out and do this, feel the wind against my face and sweat on my brow, gave me an enormous lift
With my chemo treatments now scheduled on a regular basis, Dorothy and I worked hard to develop a routine and make a normal home life for Hamilton Jr. We took regular trips to the zoo and savored visits from our families. Dorothy resumed her jogging, went to great lengths to cook me nutritious and healthy meals at those odd hours of the day and the night when I did have an appetite. Most importantly, she was my cheerleader and best friend. After a few months, our cozy Bethesda rental started to feel like home, and things seemed pretty normal.
But things were not normal.
I knew that I was receiving the best medical treatment in the world at NCI. But after the first cycle of chemotherapy was completed, I realized that while the doctors were doing great things for my body, they were doing nothing for my mind. And I understood why.
At a major research center where doctors are treating very sick patients and testing new protocols, there is little time left to worry about a patient's emotional condition. In the abstract, they all understand the benefits of a positive attitude, but there are not enough hours in the day to play doctor and therapist. And even when acknowledging the importance of the right attitude, their advice is superficial.
"Have a positive attitude," one young doctor suggested during a check-up. When I asked him what he meant, he said, "Just hang on!"
I was not content to just "hang on." I believed that there was much I could do to assist in a return to good health. But I realized ultimately that I would have to look inside myself to find the emotional and spiritual resources necessary to develop and sustain a positive attitude.
An obvious starting point was to talk to other cancer patients. They -- not my doctors and nurses -- were the ones who really understood what I was going through.
Some patients were withdrawn, depressed, and didn't even want to talk. One man about my age simply cut me off when I asked about his cancer: "Look, I've got my problems and you've got yours...just leave me alone! I don't want to talk to anybody."
But there were others who were talkative, laughing, and extroverted. One little old lady of about seventy kept me in stitches for about fifteen minutes with jokes about doctors and death. When she ran out of cancer jokes, she started in with some dirty jokes chock-full of four-letter words that could have been told in a Las Vegas nightclub. She cleared the area where we were sitting and talking.
I found this second group of patients had come to grips with their disease and the realities of cancer despite -- in many cases -- poor prognoses. In more cases than not, these people were doing well medically and exceeding their doctors' expectations.
I got one doctor who was treating me to talk about the impact of attitude on disease. "Look," he said, "you have two cancer patients with the same disease and the same prognosis. One goes home, cuts himself off from family and friends, locks himself in a room watching television, expects to die and does die. The other surrounds herself with the love and support of family and friends, continues working, is determined to beat cancer, and either does beat it or greatly exceeds the medical prognosis. Doctors know this anecdotally and know it instinctively. The problem is that we have trouble dealing with anything that we can't prove or quantify. Most of us just don't have time to think about this stuff."
As I talked to more and more cancer patients who exhibited this joy of life, I was inspired by their attitude...an attitude that I did not yet have. I gained a deeper understanding that theirs was not merely "a will to live." Many were in the late stages of their illness, were not expected to live or were being treated for rare diseases with highly experimental therapies because nothing else had worked. Although expressed in different ways, I heard the same thing time and again. They described their cancer as a "strange blessing" that had "focused their life" or made them "appreciate life." They cherished each day, every friend, and each gesture of love or affection.
Some dwelled on the importance of a spouse or loved one. Most mentioned religious faith. Several recommended particular books.
I went to the store and bought so many books that I carried them out to my car in a grocery cart. Some were goofy, others relied totally on prayer, and still others recommended untested diets or vitamins. I read ten or fifteen pages before putting most of them aside.
But two authors -- Norman Cousins and Dr. Carl Simonton -- have written books about the mind-body relationship that opened my mind to thinking about my illness in a totally different light. Both authors are grounded in practical knowledge, but with a healthy respect for things that we know but cannot necessarily prove.
Norman Cousins, a layman, wrote in Anatomy of an Illness how he refused to accept his doctor's death sentence for a bizarre degenerative disease. He described how he fought back, designed his own "treatment," and over a period of time was returned to full and normal health.
Dr. Carl Simonton, a radiation oncologist, had worked for twenty-five years to understand the impact of attitude on cancer. His book, Getting Well Again, is an inspiration for anyone with cancer.
The theme of both books is that the natural state of the human body is good health and that the body contains enormously effective natural healing powers which can be employed to beat disease. Indeed, every day, the human body's natural system kills germs, viruses, and cancer cells run amok. Both Cousins and Simonton believe -- based on personal experience and years of study -- that a person can help to muster these powers, and that a person's belief in the natural healing power of the human body can have a significant impact on the course of cancer.
These books said, in essence, that just because we do not understand how something works does not mean that it does not work. The medical profession has a name for the impact of a person's belief on the course of an illness -- they call it the "placebo effect." It seemed strange that many in the medical profession can accept the reality of the "placebo effect" while distrusting theories and studies based on that same phenomenon.
Both authors strongly recommended that cancer patients work in active partnership with their health team, emphasizing the importance of attitude, stress reduction, exercise, diet, and the happiness that comes naturally from family and friends. Above all, they recommended that a person must have a purpose in life beyond their own narrow and selfish desire to survive.
These books became very important to Dorothy and me. Not because they contained some easy "secret cure," but because they were compatible with our own values and beliefs. I believe in a kind and benevolent God, but I have always felt that God helps those who help themselves. I cannot expect God to fight this battle for me alone -- I must do my part. Sure, God is capable of miracles, but it is unlikely that he will waste one on me.
These authors provided me an intellectual framework to think about my cancer differently. I began to regard my body as a battlefield for the war being waged between the cancer cells and the chemotherapy. It was my job to keep my body -- and mind -- healthy and positive. Some mornings I would literally roll out of bed onto the floor because I did not have the energy to stand up. Eventually, however, I would stand up, and no matter how weak I felt, I would walk or even jog a couple of miles every day. And without exception, that exercise, that attempt at being normal gave me energy and hope to keep going.
I began to see for the first time that this ordeal could be the basis for refocusing my own life. Cancer does not have to be a curse...it can be an opportunity to gain insight into your life.
Once I believed that emotionally, spiritually, and intellectually, I could undergo anything...and was prepared for any outcome.
My remaining treatments went well but were not easy. Over the long haul, the powerful chemicals had a cumulative, debilitating effect on my body. Because my white blood cell "count" (which is the essence of the immune system) stayed surprisingly high, I asked my doctors to increase my dosage on the accepted theory that the more your body can tolerate, the better. After much internal debate -- and my signing an entire new set of forms -- they gave me the increased dosage for the last two months.
Copyright © 2000 by Hamilton Jordan