This Can’t Be Happening to Me
I was a healthy 37-year-old woman having a routine checkup. Then the doctor felt a suspicious lump in my breast.
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The main reason I went to see my doctor on Friday, May 16, 1986, was that I needed a new prescription for thyroid pills because of thyroid surgery I had had as a child. I was 37 years old and felt fine. I had noticed a small lump in my left breast, but since I had had three benign tumors removed over the past fifteen years, I was more concerned about taking time off for day surgery than about what the lump might mean. My physician of ten years, Dr. James Lindsey, knew well how much I disliked going to the doctor’s office, so I knew he wouldn’t let me out of there until I had a complete checkup.
During the checkup Dr. Lindsey examined my left breast. I assumed the new lump was also from fibrocystic breast disease, the condition that caused the previous benign masses. I was surprised when Dr. Lindsey insisted that I have x-rays, blood work, and a mammogram that afternoon. He told me the results of the tests would be delivered to a surgeon, Dr. H. Lamar Jones, Jr., whom he had arranged for me to see the following Monday. I didn’t believe the lump would be anything serious. I thought that at the worst Dr. Jones would perform a simple procedure in his office to remove it.
On Monday morning I went to see Dr. Jones. He informed me that the mammogram results showed there was probably cancer in my left breast and that there was a suspiciously dense area in my right breast. I couldn’t believe what he was saying. All I had was a lump in my breast. No pain, no suffering. I think I immediately went into shock. Dr. Jones could tell that I was only half-way comprehending what he was telling me. He said that I could go to the hospital for a biopsy or he could do a needle biopsy in his office and get the results back in an hour. I was too apprehensive to wait and decided on the needle biopsy. My left breast was deadened with a local anesthetic, then Dr. Jones stuck one of the longest needles I’ve ever seen into me and removed part of the tumor, which was sent to the pathology lab across the street at Austin’s Seton Medical Center. His nurse informed me that I could sit in the waiting room or return in an hour for the results. I was too nervous to sit still, so I decided to drive around. I went to a 7-Eleven and called some friends at Texas Monthly, where I work, for moral support. I told them what was happening and asked them to pray.
When I returned, Dr. Jones’s nurse quickly ushered me into his office. From the grim look on the doctor’s face I knew the outcome of the test. I was as scared as I had ever been. The results were positive; it was cancer. I looked at him and immediately thought, “This is a terrible joke.” Cancer was something that you read about. Something that happened to other people or distant relatives. He told me that my left breast would have to be removed and perhaps my right as well. Everything seemed so absurd that I cracked a joke about not ever being able to be a topless dancer.
Since the biopsy was done only on my left breast, Dr. Jones would not decide whether to remove my right breast until I was on the operating table, where he could also do another biopsy. My left breast showed an ill-defined star-shaped mass, which usually means the tumor is not self-contained. Dr. Jones told me that there are different surgical approaches to breast cancer. No longer is a radical mastectomy—removal of the breast, chest muscle, and lymph nodes—the standard operation. Because of the nature of my tumor, Dr. Jones advised against a newer procedure, a lumpectomy, the removal of only the tumor and a section of the surrounding tissue. He recommended that I have a modified radical mastectomy, in which the muscles under my breasts would remain unless they too turned out to be cancerous. The lymph nodes under my left arm would be removed because there was evidence that the cancer had spread, and if the biopsy on the right breast was positive, the lymph nodes there would be removed and checked for cancer. Dr. Jones showed me pictures of women who had had mastectomies and pictures of women who had had reconstructive surgery. The pictures were terrible to me. The scars on the women who hadn’t undergone reconstruction looked awful.
Dr. Jones told me that he would perform only the cancer surgery. He said that I would need to consult with a plastic surgeon about the breast reconstruction and when it should take place. After seeing the pictures I knew that if I had to have the modified radical mastectomy, I wanted all of the surgery done at the same time. I couldn’t stand the thought of waking up with part of me missing. Dr. Jones suggested that the surgery be done within two weeks. He made an appointment for me with Dr. E. Richard Parker, a plastic surgeon, for Wednesday, May 21.
I went to work that Monday afternoon and informed people about what was happening, and they were wonderful. They weren’t concerned about my missing work. They were concerned about me. After telling them, I had an even more difficult task. I had to tell my family, especially my mother, my daughter, and my boyfriend. My mother completely fell apart. My father had died just two years before from a heart attack brought on by a fight with colon cancer. She automatically envisioned me dying. My daughter, Jennifer, who was eleven, was angry at first. She couldn’t understand why this was happening to me. My boyfriend was great. He said that everything would be okay and that we would get through this. One of my sisters, Angela, actually got me to laugh; she said, “Tish, there never was that much there anyway.”
On Wednesday Dr. Lindsey called to tell me he had scheduled bone and liver scans to determine if the cancer had spread. I told Dr. Lindsey that I was seeing a plastic surgeon that afternoon. He said that some doctors suggest delaying the reconstructive surgery until after chemotherapy and radiation treatments. I started to cry. I knew that after having one or perhaps both breasts removed, I couldn’t return to the hospital a year later for what I would then consider elective surgery. I also knew that I couldn’t face not having breasts for that long. Dr. Lindsey then told me to keep my appointment with Dr. Parker. I took one tranquilizer, and then on the way to my appointment I took another.
Dr. Parker’s optimistic and jovial nature eventually made me feel better. He didn’t treat me as if I were dying. He said he had done reconstructive surgery immediately after breast removal numerous times with few complications. A weight had been lifted. Since I had to go through with this, at least it would be my way.
Dr. Parker explained the latissimus dorsi myocutaneous flap technique for breast reconstruction. A section of muscle, fat, and skin would be repositioned from my back to my chest. The artery and vein would be rotated under my arm and moved in front to supply the reconstructed breast, and the skin on my back would be pulled together, leaving a scar along the bra line. Dr. Parker explained that Dr. Jones would remove the breast or breasts, which would take two to four hours, and then Dr. Parker would perform the reconstructive surgery, which would take another three to five hours.
He handed me a clear plastic bag filled with something soft and squishy. The contents of the bag were translucent and felt the way the blobs of a lava lamp must. The bag was a sample of the silastic gel-and-saline solution implant I would receive. It looked and felt silly; I couldn’t believe it would replace my breast. Dr. Parker explained that following the surgery I would need to massage the reconstructed breast three to four times a day for six weeks and then daily for the rest of my life. He stressed that massage was essential to keep the breast soft and to prevent scar tissue from restricting movement of the grafted muscle. He did not thoroughly explain the nipple-and-areola reconstruction, which would be done six to eight weeks after I left the hospital.
On Thursday I went to the nuclear medicine section of the radiation department at Seton for the bone scan. There I received an injection of a radioactive material and returned a few hours later for the pictures to be taken. The machine that the technicians lowered over my body looked like an x-ray machine, and I was able to watch the pictures on a TV-type monitor. What I saw was a dot-matrix image of my bones. None of this was painful, and it took only about an hour.
The next day I returned to the same department for a liver scan, and that afternoon I went to see yet another physician, Dr. John Doty, an oncologist. I didn’t think I could handle seeing one more doctor. In the past week I had assimilated more medical information than I thought possible. I was really feeling like a piece of meat. Dr. Doty was young, only 34, and reassuring. He had good news for me: The bone and liver scans had shown no signs of cancer. Dr. Doty recommended that I have a year of chemotherapy followed by six weeks of radiation treatments. The chemotherapy would consist of methotrexate and 5-fluorouracil administered to me on a weekly basis by Dr. Doty’s nurse, Lora Allen, and three 50-milligram tablets of cytoxan taken each day. Dr. Doty would prescribe pills to help if I had nausea. He explained that I might have hair loss, and if I did, he would write a prescription for a wig. Not all of that sunk in right away; the only thing I could think of was getting out of his office and away from all the pressure.
The operation was scheduled for the next Wednesday, May 28. I was to go into the hospital the day before. I called my mother and asked if she could come down from Bedford. I insisted that she bring a friend in case something happened while I was on the operating table.
The weekend passed much too quickly. Tuesday was here. I kept thinking that this couldn’t be happening. I had been to see Dr. Lindsey for a routine prescription, and now my whole life was changing, and there was nothing I could do about it. My mother and my aunt arrived early Tuesday afternoon. We proceeded to Seton, where I had an encouraging conversation with the admissions clerk, who informed me that she had had breast cancer and successful reconstruction the year before. After I got to my room I was reluctant to undress. I knew that it would be at least a week before I could wear street clothes again. My mother and my aunt didn’t want to leave, but finally I persuaded them to by saying that we all needed to rest.
Dr. Lindsey came in that afternoon to say hello and ask if I needed anything. My surgeon, Dr. Jones, came in to tell me that he would see me early in the morning. Then the plastic surgeon, Dr. Parker, came in and said that his assistant would call my mother and aunt during the operation with progress reports. The operation was scheduled for seven in the morning. When the night nurse brought in my sleeping pill, I was ready to be oblivious to everything.
The next morning I was awakened by a different nurse telling me that if I wanted to brush my teeth, I had only a few minutes. My mother and my aunt arrived just before I was taken downstairs. They both were smiling their it’s-going-to-be-okay smiles. I could tell that wasn’t what they were thinking.
The orderly wheeled me into the operating waiting room. It looked so serious that I almost laughed. About six or seven other patients were lying on gurneys with plastic bonnets over their hair, waiting for their surgery. Finally I was wheeled into the middle of the operating room. The pill I had taken the night before still seemed to be working. I was half asleep but scared stiff. The operating room seemed very cold, but I didn’t know if I was shaking from the cold or from fright. Tables stood along the three walls that I could see, and surgical nurses were arranging instruments on them. The nurses started telling me what a great physician Dr. H. Lamar Jones is. They said his nickname is “Lamarvelous.” The anesthesiological nurse said that she was going to give me something to relax me, and that is the last thing I remember about the surgery.
Twelve hours later I woke up. Both breasts had been removed. I had been through operations before, and I thought I was prepared for the pain that was inevitable after being cut. I wasn’t even close to being prepared for this. I felt paralyzed. I couldn’t move my body; I couldn’t even lift my arms. The nurses kept coming in to turn me and to give me pain shots and to check the two drainage bags on my left side and the two on my right. My chest hurt. My back hurt. My sides hurt. I was beginning to doubt my sanity for putting myself through this. I think I actually begged for more pain medication.
At about five or six in the morning I started to settle into a drug-induced euphoria. I was finally able to grasp a glass of water, and I was delighted. It’s amazing to get excited over holding your own glass of water. I was still groggy and scared but very happy to be alive.
Dr. Parker arrived soon after that. He said there hadn’t been any problems. He checked the incisions and the drainage bags and told me that I would be able to get out of bed later that day. I looked at him as if he had to be kidding. He removed the gauze coverings from the breasts. The skin that had been grafted onto my chest was dark blue, like skin that had been badly bruised. From the look on Dr. Parker’s face I knew that this had to be normal. At least I prayed that it was. He said that a nurse would clean and dress the incisions and check the drainage bags every four hours.
I spent the next couple of days trying to regain my strength. I walked back and forth to the bathroom, and after about three days I was able to make it down the hall to the coffee room without tiring. I was so sore that it seemed as if someone had beaten me, but because nerves had been severed, I could not feel anything around my chest, on the underside of my arms, or around the eight-inch incisions on my back. I was told the nerves would eventually heal, but there was no predicting when. My new breasts would never have feeling.
On Sunday, June 1, four days after my surgery, I began to want a bath and a shampoo. I was starting to feel better, and I really wanted to go home. Finally, on Tuesday, Dr. Jones and Dr. Parker said I could. Dr. Parker removed one of the drainage bags and showed me how to drain the fluid and to keep a record so he or Dr. Jones could determine when to remove the others. I wouldn’t be allowed to bathe until the bags were removed. I was to massage both breasts three times a day and do arm exercises to stretch the muscles. Dr. Parker also took out the stitches in my back.
I called my mother and told her I could leave. The clothes I had brought to wear home were hard to get into because I still had no strength in my arms. Trying to hide the drainage bags under a summer shirt was almost impossible. After getting home I was so worn out that I took a two-hour nap. My mother and my aunt did the grocery shopping and cooking. The next day I insisted that they return to Bedford because I wanted to be alone. So many people had been telling me what to do that all I wanted was some time by myself. Jennifer was staying with my ex-husband. I had three days before I had to see Dr. Jones, and I spent them just walking around the house and watching daytime TV.
On Friday, June 6, a friend took me to see Dr. Jones, and he removed the drainage bags. At last I was no longer what I had been calling a bag lady. Later that afternoon I joyfully prepared for my first bath. I hadn’t really thought about how much we use our arms to get in and out of the tub, but I was really determined. I ended up practically crawling in and out of the bathtub, and for three hours after that I was too exhausted to move a muscle.
The next Monday, after seeing Dr. Parker, I went to my sister Kathy’s house in Bedford for a week to recuperate. I spent the time at her house watching TV and doing exercises to regain the strength in my arms. The skin on my breasts was returning to normal—at least it had gone from dark blue to reddish-pink. Mostly I avoided looking in the mirror and decided to concentrate on getting through each day.
I was to start chemotherapy on Friday, June 20. I was petrified about that. I had dreams about waking up with no hair. In one dream I’ll remember forever, Dr. Doty tells me that I have cancer of the hair follicles and that the hair on my head will never return. When I went to Dr. Doty’s office I was relieved to hear that the chemotherapy would be administered by intravenous injections, rather than by intravenous drip. The shots weren’t that bad, but they made me feel tired, and after a couple of days on the cytoxan I was a little sick to my stomach, but not to the extent I had anticipated.
After getting over the initial shock of what I was going through, I began to notice the same people in the doctor’s office week after week. I asked Lora Allen the age of the youngest cancer patient in the office, and she said thirteen. In the waiting room I met a woman who had had a colostomy, an older woman with brain cancer, a man with Hodgkin’s disease, and another woman, slightly older than I was, who had had one breast removed about the same time I did. Every week I found myself looking for these people, hoping that they were doing okay.
Now, with some time to think, I started reading everything I could about breast cancer. The American Cancer Society statistics were staggering. About one of every ten women will have breast cancer. In the United States 130,000 new cases of breast cancer will be diagnosed this year. The survival rate ranges from 67 to 90 percent, depending on the stage of the disease. This year 41,000 women are expected to die of breast cancer; it is the number three cause of mortality among women after heart disease and lung cancer. I also read that breast cancer has a tendency to run in families, but none of my relatives had had it.
I was able to return to work part time on June 23. For the first two weeks I could barely move by the time I went home. Very slowly I began to find my strength coming back to me. It was wonderful to be going to work every day instead of dwelling on what had happened and was happening to me. Jennifer made a big difference in my recovery, giving me both emotional and physical support. But I know that as my daughter she worries she will get breast cancer too. The weeks went by quickly. I kept waiting for my hair to fall out. It got thin, but I still didn’t need a wig.
Dr. Parker had scheduled my nipple reconstruction for Wednesday, August 27. That would be done as day surgery at Grandview Surgical Center and would consist of taking a one-and-one-half-inch-square piece of skin from the inner thigh of each leg o make the areolas. The nipples would be made from labial tissue. I arrived at the hospital early that morning and was immediately sedated. I woke an hour and a half later feeling stiff and sore. My friend Mary picked me up and took me home, where I fell back asleep. I had six- to seven-inch scars on the insides of my legs that hurt whenever I walked. I was able to return to work the next Monday.
Between my visits for chemotherapy I had to see my surgeons, Dr. Parker and Dr. Jones, for checkups. Once a month I had to see the oncologist, Dr. Doty. In September Dr. Doty found a knot in my neck that concerned him. Day surgery was arranged at Seton Medical Center on September 19. This time I had to force myself to go to the hospital. I didn’t know how much more I could take. I remember being wheeled into the operating room, praying that this would be the last time I would be operated on.
When I awoke, I was in the recovery room. Dr. Jones, who had done the surgery, came to see me and told me that the tumor wasn’t cancerous. Thank God! I could hardly wait for Mary to pick me up. The less time I spent in hospitals the better. After I got home I slept most of the day, and I was able to go back to work three days later. One of the side effects from that surgery was that I lost feeling on the left side of my neck, although as had been the case with my previous nerve damage, I was told that sensation should return.
I continued to receive chemotherapy about once a week. Every three months I had chest x-rays and a blood chemistry profile. In December my profile turned suspicious. Dr. Doty told me that there are twenty to thirty reasons for that, and he decided to wait two weeks to have the profile redone. Again the blood profile turned out abnormal, and Dr. Doty scheduled me for another bone scan and a CAT scan at Seton.
Since having surgery in May I had gone from feeling sorry for myself, from feeling disfigured and depressed, to feeling happy just to be alive. Now I was angry that I had to face yet another test that might show that I had no hope for survival.
On January 7, 1987, I went to Seton for the bone scan and CAT scan. I wouldn’t know about the results until two days later, when I saw Dr. Doty. I found myself simultaneously dreading that meeting and wishing it was over. Finally he informed me that everything was okay. For the first time since that initial visit with Dr. Lindsey I felt like jumping for joy.
During the Christmas holidays of 1986 my sister Kathy had asked me what I wanted as a present. I asked that she get a mammogram. In March she did, and there were no signs of cancer. We were ecstatic. My sister Angela, who was adopted, has not had a mammogram. Then in late April Kathy noticed a bruise on her left breast. She went to the doctor to have it checked, and the doctor drew fluid from her breast. The fluid contained cancer cells. My heart was broken. I thought that since I had gone through this, everyone I loved wouldn’t have to. Kathy has fibrocystic disease also. It turns out that she was one of a small percentage of women whose mammograms are inaccurate because the presence of nonmalignant breast masses blocks the image of the cancerous tumor on x-rays. On May 26, her birthday, Kathy had surgery. Both breasts were removed. She is now undergoing almost to the letter the same chemotherapy treatment that I had.
I finished chemotherapy last July. Although I had suffered few severe side effects, my blood counts had been low on several occasions. Dr. Doty and I decided to forgo the radiation treatments since they might complicate future therapy if the cancer recurred. Now each day I take twenty milligrams of Nolvadex, an anti-tumor drug. I see Dr. Doty every three months, but soon I will have to go only twice a year. My breasts still don’t look normal. In a way they look like caricatures of breasts, but it is wonderful to have something there. The cost of the operations and chemotherapy has been unbelievable. The total so far comes to about $32,000. If I had not had health insurance, I don’t know what I would have done. Paying off my share of the bills took a full year.
It has been a year and a half since my ordeal started. I have learned a lot about myself and about my disease. I have had relatives die from cancer, but until you find yourself having to cope with the disease, you can’t understand what a diagnosis of cancer actually means. If it hadn’t been for friends and family, I am sure that I wouldn’t have been able to hold on to my sanity. I consider myself very lucky to be surrounded by such loving, caring people.
The American Cancer Society has a program for women who have had breasts removed. It is called Reach for Recovery. Volunteers who have had mastectomies are trained to help other women who are just beginning their recovery. The volunteer visits the woman in the hospital, explains the exercises needed for her to regain her strength, and lends a psychological helping hand. I’m hoping that I can get into a training program so that I can help make dealing with cancer a little easier for someone else.