“You Have Cancer” reveals how four childhood friends, who grew up in the same New Orleans neighborhood and went to the same schools and the same church, suffered from the same dreaded disease at the same time — cancer — and how their individual fights become a united struggle.
Eight years ago, when each of them was diagnosed with cancer, they hesistated to tell each other. They hesistated to tell anyone. The four decided to write the book because they were stunned to learn that African-American men had the highest cancer incidence and death rate (according to the National Cancer Institute). Their book was completed well after the unfortunate passing of one of the authors, Ellis Brossett Sr. The surviving three commented, "We made a commitment to Ellis, who passed away a few years ago, that this book would be published and we fulfilled that commitment."
In the book, the authors share their personal stories to uplift and inspire cancer patients and their caregivers and to show them coping and survival techniques. They also inform them of resources available. Here is an excerpt.
Bad News
As I sat in the waiting room of Ochsner Foundation Hospital’s Outpatient Clinic for my annual physical checkup, I spotted Millie Charles, Dean of the School of Social Work at Southern University at New Orleans. My first thought was to pretend I did not see her because some people do not want to talk about their illness. When you greet someone in the hospital, what do you say? How are you? Then their reply is, “Oh I’m doing fine.” Then why are you here? Don’t lie to me. You must be sick. But, I thought she would think the worse. So I went over and as I suspected, she did see me.
“Hi, Millie,” I said as I kissed her. We always kiss. Everybody in New Orleans kisses. I don’t remember what she said, but the next thing I said was, “Have you heard from Benny?” I always ask about my old friend, Benny Priestley, who taught social work under her in the early seventies. I got to know the distinguished Millie Charles through Benny. Whenever we met, the second question after “How are you?” was always “Have you heard from Benny?” This time she said, “Oh yes, and I know you have.” “It’s been a while,” I answered. I had been extremely busy at the office and had not stayed in touch with my old friend, even though Benny is a stockholder in our company, IMDiversity, Inc. “How is he doing with his cancer?” “Cancer? Does Benny have cancer?”
I was shocked. My mind went blank. I don’t know what I said next. I only remember thinking, why didn’t I know about it? He was my friend. I should’ve known first. I should have been telling her. Did Benny not consider me friend enough to share his illness? I was stunned, really. I couldn’t wait to tell my wife, Rosa, and I couldn’t wait to talk to Benny to find out how he was doing. Was he dying? God! I made up my mind that I wanted to see him. When I left the hospital, I called Rosa to tell her the bad news and to tell her that I was going to Portland to spend some time with him. If I had only stayed closer in touch, maybe he would have told me. I still couldn’t believe that my good buddy had cancer and was possibly close to death. He was my age; he couldn’t be dying. No way. Then I remembered that another classmate, Ann Daste, had just died of cancer. She never smoked or drank. But, Benny started smoking before I did, in high school.
How would I approach him? Hey man, why didn’t you tell me you had cancer? Or maybe, Hey Benny, you doing OK? I did not want to offend him, but I was disappointed that he didn’t tell me. He was my boy, and he should have told me first. We waited until Sunday, the day we usually called him, and he told us all about it. I never asked why he didn’t tell me. I just let him talk. I really wanted to see him. He said he was coming to New Orleans in October for his 40th Class Reunion from Xavier Prep, Class of 1960 and to visit. He asked if he could stay with us. We said, “Yes!” at the same time, and Rosa said that she would pick him up at the airport and chauffer him around while he was here and that if she had a conflict, he could use her car. It was settled.
It was good to see Benny. It had been a couple of years since his last visit. He had gained a little weight and gotten a little grayer, but so had I. He told us the whole story. I did not ask him why he had never told us. I still didn’t want to press him. I thought that it was not something you’d want to brag about. And, maybe if there was nothing I could do to help him, why would he want to tell me? We remembered that Clara, Benny’s wife, also had a bout with cancer. It was a good weekend. We had a great time and Rosa and I promised each other we would do a better job of staying in touch with Benny and Clara.
The very next month, on November 21st to be exact, while watching Monday night football, I put my hand on my neck and felt something strange — a small nodule. I knew it wasn’t supposed to be there. I asked Rosa to feel it. She searched my neck but could not feel anything abnormal. I took her hand and put her finger on the nodule. She asked me whether I had any kind of infection. I answered, “No.” She said that I should call Mike (Dr. Michael Lavigne), my primary care physician and a family friend.
The next day, I didn’t call Mike. I forgot. I forgot, as many people, especially men, especially African-American men do when it comes to going to the doctor. I probably would have put off calling anyway because I was very busy and I did not want to take off during a short week to go to the doctor’s office. It was Thanksgiving week and our good friends Reggie and Dianne Felton were coming to New Orleans from Silver Spring, M.D., for the holidays and for the Bayou Classic football game — Southern vs. Grambling, the Saturday after Thanksgiving. Reggie and Dianne — who have been our friends for over 30 years — lived in New Orleans in the 1970s.
Ironically, a friend of theirs had died while he was in New Orleans for Mardi Gras the year before. We had heard about it and asked them to tell us what happened. They told us how the man just dropped dead on the dance floor at a ball. They then told us about another friend who had died recently. While dressing to go out, he asked his friend to help him button his collar. She did, and noticed a large knot on his neck, asking him what it was and how long it had been there. He said he didn’t know what it was but that it had been getting bigger and bigger. She told him to see a doctor right away. He did, but he died within three months. He was a relatively young man in good health, they thought. His death was a shock to all of their acquaintances. Both Rosa and I immediately looked at each other in shock. We told them about my nodule and they pleaded, “Please go to the doctor as soon as possible.” I called Dr. Mike Lavigne the next day (Wednesday, the day before Thanksgiving). Mike asked the same question Rosa asked, “Have you had an infection lately?” “No.” He said that if it was still there after the holidays to call him. He said that he would give me antibiotics and that if the nodule did not go away I would have to get a biopsy.
During a reception that we hosted at the Bayou Classic, I asked my son’s best friend, Dr. Charles Aramburo, to feel my neck. Charles, a very light-hearted guy, looked at me very seriously and said, “Mr. Edwards, you need to let your doctor see this as soon as possible.” That scared me. I didn’t tell Rosa. I called Mike on Monday morning and got an appointment for that Friday. I took Friday, but really I should have insisted on Tuesday.
When Mike saw me, he took one look and said that “We need to biopsy that.” “Who do you want to do it?” “Who?” I asked. “What doctor? Joe or another surgeon?” Joe Labat is an old friend. I called Dr. Labat at 9:00 a.m. on Monday and was in his office by 9:30 a.m. He scheduled a CT scan for December 6th and outpatient surgery for December 13th. I had the scan done on December 6 and left town that same day on a business trip. On the way back at the Atlanta airport, I ran into another old friend, Rudy Major, who invited my son, Pres, and me for drinks in the Delta Crown Room. I told him I was scheduled for surgery on December 13th for a biopsy on my neck, and he said that he could see it, the nodule Rosa couldn’t even feel it a few weeks earlier. I was absolutely amazed that he could see it. When I got home that night, I got a call from Dr. Labat about my CT scan results. He said that he had bad news. The CT scan indicated what appeared to be lymphoma. He explained that he had had a high cure rate with lymphoma and told me to come into the office on Monday to talk about it more. That night, Rosa and I talked. We hugged, prayed and talked some more. I didn’t sleep well Friday, Saturday, or Sunday night.
Don’t claim it
On Monday, Dr. Labat spent a lot of time with me. He went over case histories of patients whom he treated successfully. He told me that the surgery would last about an hour and a half, but that it would be outpatient and that I would be able to go home that day. He told me not to eat or drink anything after midnight and to report to Pendleton Memorial Hospital at 6:30 a.m. on Wednesday, December 13, 2000. I went back to the office and called our good friends Larry and Brendel Stewart in Atlanta to tell them about my surgery and the possibility of lymphoma. Brendel told me that she would put me on their prayer list. She also told me not to claim it!
I arrived at the hospital at 6:30 a.m., went to Admissions, paid the $200 deductible, and went to the same-day surgery department. The nurses and the anesthesiologist began their work. Dr. Labat came in and talked with us. I was prepped, and taken into surgery.
I was later told about events surrounding my operation. Rosa went into the waiting room. Later my sister-in-law, Lona joined her. Lona, who is very religious, began praying the rosary. After about two hours Rosa became worried because the surgery was supposed to take only an hour and a half. Then two and a half hours passed. Growing worried, Lona told Rosa that she should call my sons.
After three hours, Dr. Labat came out and said he was sorry. It was bigger than he expected. He said he got all he could see. The tumor was approximately the size of a lemon, and because it was attached to the jugular, he had to remove the right jugular, but he said I only needed one. He told her that they would have to keep me for a couple of days. In the meantime, my brother, Edgar, called my office to ask my son, Pres, whether he had heard anything. The operator told him Pres was not in, so he asked for my other son, Scott. She said that Scott was not in either and that all of the Edwards family had been called to the hospital. This information alarmed him, so he began calling other family members to see what was happening, but nobody knew anything.
When I opened my eyes, Dr. Labat was standing over me with a very serious look on his face. He told me that it was not lymphoma; that they would have to wait on the pathology report, which would tell what kind of cancer it was; and that the report would take about 10 days. “I got all I could see,” he said. “It was attached to your jugular vein so I had to cut the jugular vein and tie it up.” He told me that they were going to keep me for a couple of days to take tests and to let the incision heal. Rosa came in and told me that my sons, Pres and Scott, and daughter-in-law, Trina had been there as well as my sister-in-law, Lona. With a tube in my mouth, I was very uncomfortable as they took me to my room.
All of my brothers and their wives and my nephew and his wife and one of my employees came over that night. When I saw all of those people around the room looking at me, I got scared. I said to myself, “Oh, s_ _ _.” They’re looking at me as if I’m going to die!
I couldn’t believe what was going on. “I AM IN THE HOSPITAL. I HAVE CANCER. I am in the prime of my life. I thought I was healthy. I didn’t feel bad. I didn’t hurt. I can’t be sick. What’s going on? Am I about to die?” But, then I remember what my friend, Brendel, said, “Don’t claim it!” I wasn’t claiming it!
Rosa wanted to spend the night in the hospital with me. But, I told her to go home, because there was little she could do that night. She had to get some real sleep. I knew she would need to be rested and prepared to deal with what we were about to face. Our phone was probably ringing off the hook, too. It was time to tell her mother and the other relatives.
As I expected, the next day found me taking all kinds of tests. I still had the tubes in me, and my neck was stiff and very sore. The surgery I had is called a deep neck dissection.
That day, I had an echocardiogram, a nuclear bone scan, and an MRI of the neck. The oncologist, Dr. Reuben Vargas, came to see me. He examined me, and talked with Rosa and me. He told me that he was leaving town for two weeks, but that one of the other oncologist in his office would see me to explain the pathology report, which would not come back for ten days. Dr. Labat would be the lead doctor on my team. On Friday, December 15th, I was discharged and sent to see an ENT specialist. His examination revealed nothing related to the cancer — unremarkable. When I got home that day, my brother, Lloyd, was there. He had been doing some repairs around the house and told me that he would fix everything, saying “You have a lot to be fixed around here, but don’t worry. I’ll come every day and do the work and check on you.” I’m thinking, “I really don’t want any company and I don’t want to talk to anyone. I didn’t want any visitors!”
This was mid-December, and I had not done any of my Christmas shopping yet. I always got a big kick out of getting toys for my grandchildren. I had a big bandage on my neck and as soon as it came off, I did my thing. But, I’ll admit, I was doing my best not to get pushed and shoved.
I didn’t return to work on Monday, December 18th or Tuesday. I did go in for a half day on Wednesday, basically, to let people see me, (that I was still alive that is) and to catch up on e-mail and other projects. We were approaching a deadline for The Black Collegian magazine, and still trying to raise a second round of financing on the road to our IPO (Initial Public Offering) of our company stock. Rosa wanted me to stay home and rest, but I had too much work to do, too many things that needed to be done. I couldn’t afford to get further behind schedule.
We raised a first round of venture capital of $3 million, and we were lining up a second round of $10 million. I had to keep things moving. On Thursday, December 21st, I was scheduled for an esophagogastroduodeno-scopy with biopsies and colonoscopy to rule out gastrointestinal origin. On Friday, December 22nd, we had our company Christmas party, a big party. Everyone came with guests. There was a band and lots of food and drink — a good ole New Orleans party. But the strangest thing happened. This young white guy who worked for me brought his girlfriend. He brought her over to me and introduced her, then asked me how I was doing. I started talking and when I looked at her, she had tears just rolling down her face. I tried to be upbeat. I told them not to worry, that I was feeling good. She probably had someone close to her who died of cancer. After that, I avoided other Christmas parties except one — my fraternity’s annual wives’ Christmas party. Everyone told me that they were glad to see me and that they were praying for me. One friend came up to me, looked me in the eye and said, “Don’t you die on us. Your wife is too young and too pretty to be a widow.” I said, “You are right, and I’m not about to die!”
We had a good Christmas. I got the grandchildren great toys. I really wanted this year to be special. I guess that’s what thinking about your own mortality does to you.
During that time, my son, Pres, came to me and said, “Dad, you ought to start going to daily mass. You can go to 7 o’clock mass at St. Maria Goretti and still get to work on time.” I was very impressed that he would suggest this to me. So I started going to mass every morning. Hey, I thought, I need all the help I can get and I am going to ask the Lord to help me. One morning, a friend, Rhesa McDonald, came to me after mass and said, “You know, Preston, you ought to pray to St. Jude, the patron of hopeless causes.” I said, “Yes. That’s a good idea. Thanks.” She told me to put it in the hands of the Lord.
On December 26th, we went to visit the wife of a friend who had just died. His son and our son were good friends all through elementary and high school. We also visited Rosa’s good friend, who also had cancer and was in the hospital, but not doing well at all. On December 27th, Dr. Labat called to tell me that the pathology report was back and that we should call Dr. Vargas’ office to make an appointment to get the results. After some confusion over whether their office would accept my insurance, with Dr. Labat even threatening to pay it himself, they scheduled me for December 28th.
Pres came with Rosa and me to get the results of the biopsy. Because Dr. Vargus was out of town, I saw another doctor in the Cancer Center. The doctor said that I had a stage 111-B metastatic, large cell carcinoma. She said the report indicated that it was cancer of unknown primary, but that it favored the lung. She told us that with treatment I had a 40 percent chance of surviving one year and a 10% chance of surviving two years. So, Pres asked, “Is that with treatment?” She said, “Yes.” He then asked, “Well, how long does he have without treatment?” She answered, “Without treatment he has three to six months.” I felt like my stomach had fallen out of my body. We were devastated. It’s hard to even remember what she said after that. She went on to say that I might be able to get into some clinical trials at Tulane, LSU or M.D. Anderson in Houston. I had heard about M.D. Anderson. Rosa used to go there with her sister every other month. After giving me a copy of the pathology reports, the doctor told us that Dr. Merlin would see me on Monday, tell us about radiation and that Dr. Vargas would see me on January 4th. But, I remembered what Brendel said: “Don’t claim it.” In just over a month, I had gone from just feeling a nodule in my neck to having 3-6 months to live.
It was a miracle! The rest of the story, part 1
The following is a conversation that was recorded on October 18, 2003, when our wives (Joyce Brossett, Rosa Edwards and Clara Priestley) were asked to tell their side of the story. The conversation included Ellis and Joyce; Preston and Rosa; and Benny. The comments of Clara Priestley are additions. We refer to this conversation with our wives as the rest of the story.
Rosa: One of my best friends had been battling cancer for years. Her cancer had just gone into the final stage when Preston found this nodule in his neck. I left town to visit her two days before his scheduled biopsy. I had not seen her in a while as she was living between the two cities and was now out of town. I went to spend a couple of days with her and returned to New Orleans Tuesday evening for Preston’s biopsy Wednesday morning.
Preston’s doctor was optimistic about his condition. However, you know anytime you find a lump, we all worry that it might be cancer. Dr. Labat, Preston’s surgeon, was encouraging. He had said following the results from the CT-scan that it could be lymphoma, one of the more treatable forms of cancer. This was the first indication that he suspected it was cancer.
I left town early that Monday to visit my friend. When I arrived, her condition had worsened. She was on oxygen at intervals during the day, yet she was still having problems breathing. I went with her and her husband to the doctor, and he told her to just keep the oxygen on continuously. His tone and expression were not encouraging.
As we sat and talked before bedtime, she told me that she now accepted the fact that her cancer was terminal. She said, “You can use the “T” word if you want.” She was such a fighter that before now she had refused to think of her illness as being terminal. She told me some time back that a couple of lesions had been found on her liver, and that you can’t live with cancer once it spreads into the liver. Yet, even then, she was still going full speed ahead trying to fight it, and at this point, she was slowly coming to grips with her impending death. She wanted to come home to New Orleans; have Christmas with her family; and after Christmas talk to the children. She did not want to spoil Christmas with them.
Joyce: So all this is taking place before Preston’s surgery?
Rosa: Yes, while lying in bed Monday night I was thinking about losing my friend, and I was worried about Preston. I thought, “This cannot be anything serious; all of this cannot happen;” yet, worrying that it could. I got back Tuesday night. Preston was taken to surgery for the biopsy Wednesday morning and they told me it would take roughly an hour and a half. After about two hours, I was really beginning to worry. I asked them, “What is taking so long? You said it would only take an hour and a half.” The nurse answered that they had just taken him back to the O.R. late. I continued waiting and finally Dr. Labat came out after about three hours. “I am just so, so, so, sorry,” he said, or something to that effect. I was so upset that I’m surprised that I remembered anything at all. I knew that Preston was not dead, but Dr. Labat said, “I am just sorry this did not come out the way I had hoped.” He continued, “I went in and it was cancer, and it had spread all around the jugular. I cut the jugular and I tried to get the entire tumor in that area, and I did the best I could... But, I am certain I did not get it all.” I was looking at him, hearing his words, still thinking to myself, “I don’t believe this...I don’t believe this!” Yet, realizing that indeed he was telling me exactly what we had all hoped and prayed would not be the case...worse had come to worst ...This is a nightmare, maybe I will wake up in a moment ...
Benny: Let me ask you. You had two bad situations to deal with it almost the same time. In hindsight, what advice would you give somebody who is going through something traumatic with a friend or a family member? What would you tell me if that same thing happened to me? What would you tell me to help me deal with that?
Rosa: Well, I really feel like I could not tell you anything. I was numb. My attitude was that it was completely out of my hands, that there was nothing I could do, so I just put it in the hands of the Lord. I felt that there was nothing I could do. The feeling that this is out of my hands, out of my control, it is happening to me, to us and there is nothing I can do. I felt completely helpless. I was despairing ... when I despair, I have no question about what to do...I pray, I talk to God, tell Him what it is and ask Him to fix it, heal it, make it right...When I pray I talk to God with words and with my heart ... but at times during this ordeal I could not put my thoughts or my needs into words...at those times, I pray the Rosary, I pray to the Blessed Mother that she will pray to God for me: I would pray the Rosary and I would receive a sense of serenity and clarity...for a time, before another rush of fear, or worry, or sadness set in...Prayer is powerful! Prayer transforms, it changes things...a condition, a state of mind, a state of heart...it is a powerful force. Miracles are granted. God is Love and He answers prayers. I can share that.
Joyce: I think that’s when you have to go, as my mother would say, you have to take it to the altar. And you have to ask God for patience and understanding. You have to ask for it.
Ellis: You know for the last two days, with us four guys talking about this, none of us cried: Preston didn’t cry, I didn’t cry, Benny didn’t cry, and Ronald didn’t cry. Why is everybody crying now? [Laughter]
Don’t claim it. Don’t buy in to it.
Do: “You have cancer” is an incomplete sentence. It should be, “You have cancer, and you can fight it. You are a winner and you can beat cancer. We are just ordinary guys and everyday people who beat cancer and you can too!
Don’t take cancer lying down.
Do: Be an active participant in your medical treatment. Be positive. First you pray. Pray hard, because with prayers you will win. Start moderate exercise to engage your body to fight the cancer. Treat yourself to your favorite foods. Embrace a stubborn determination and tell your doctor to explain whatever you don’t understand. Take your spouse/significant other whenever possible. Take vitamins to engage your immune system, especially vitamin “C” and Shark Cartilage. Humors is healing — watch funny movies, comedy shows and laugh out loud! Listen to your favorite music and sing. Stay busy.
Don’t go into seclusion. Do not hide this from your family and friends.
Do: Let friends know what you are going through. It opens up an opportunity for them to express their love for you. Surround yourself with people who love you — they are your best allies, especially your wife, children and grandchildren. Allow visitors and allow them to do something to help you. Make them to feel comfortable around you, but don’t let them stay long.
Don’t say “Why me.” Don’t blame yourself. Don’t beat up on yourself.
Do: Consider yourself a role model for someone else. Maybe it is because you are a winner, a survivor. Maybe you can handle this. Be a model patient.
Don’t worry about the bills.
Do: Focus on taking care of cancer first. You must understand that worrying will stress you out and you do not need any more stress. Try not to worry about anything. Beating cancer is your top priority. Don’t worry about the cost of your medicine or the cost of your care. Get what you need. The bills will always be with you.
Don’t accept the first opinion.
Do: Do get a second opinion. You have a responsibility and a right to get a second opinion, and don’t be apologetic about wanting this.
Don’t be afraid to look into the correlation between prostate cancer and Agent Orange.
Do: Consider your family history or previous experiences that may have exposed you to an environment where you may have been exposed to cancer-causing elements.
Reprinted with permission from “You Have Cancer: A Death Sentence That Four African-American Men Turned into an Affirmation to Remain in the 'Land of the Living'” (Atlas Books), by Preston J. Edwards, Sr., Benjamin Priestley, Ronald Bazile, Sr., and (the late) Ellis Brossett, Sr.