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The words "you have breast cancer" have the power to terrify a woman and the people who love her, irrevocably changing their lives forever. The underlying premise of Not Just One in Eight is that breast cancer, like other life-threatening diseases, is not a one-person disease. It is above all a family disease-one that tests the mettle of each family member.
Not Just One in Eight is the culmination of the author's five-year odyssey to understand the physical and emotional ...
The words "you have breast cancer" have the power to terrify a woman and the people who love her, irrevocably changing their lives forever. The underlying premise of Not Just One in Eight is that breast cancer, like other life-threatening diseases, is not a one-person disease. It is above all a family disease-one that tests the mettle of each family member.
Not Just One in Eight is the culmination of the author's five-year odyssey to understand the physical and emotional ramifications of a breast cancer diagnosis, from the moment of its pronouncement, to how a woman and her family experience the disease.
Not Just One in Eight focuses on nineteen breast cancer survivors; eighteen women and one man. Each story chronicles one survivor and their support team. By weaving together the survivor and the support team's perceptions, the true picture is revealed in one coherent story. How did each person handle the diagnosis? What medical decisions were made? How and why did they reach those decisions? What fears did they confront? Were relationships strengthened or weakened? How did children cope? Did the fear of dying increase or decrease with time? Each story ends with a postscript: Where are they today?
Patricia A. Ganz, M.D., a renowned oncologist and researcher, explains the latest breast cancer research. Janis Raynak, a malpractice attorney with an emphasis on breast cancer cases, reveals how women can prevent a misdiagnosis, and offers recourse if a misdiagnosis is made. Lastly, the survivor and her partner candidly discuss their views on sex and sexuality. How did and how does a breast cancer diagnosis affect this very important part of our lives.
As a survivor and the daughter of a mother who had breast cancer, Stevens provides a compassionate, informative and provocative look at how a woman and her family can survive a breast cancer diagnosis.
Breast Cancer Really Is a Wake-up Call!
Age at diagnosis: forty-three (7/28/93)
Date of interview: support team 1/97, Barbara 2/2000
Type of breast cancer: infiltrating ductal
Size tumor: 1 cm; stage I
No positive lymph nodes
Surgical procedure: bilateral mastectomy (one breast prophylactic)
Reconstruction: both sides, not immediate
Estrogen receptors: borderline positive; Progesterone receptors: negative
Barton Stevens, her husband; Betty Weiss, her friend
Stephanie Johns, her friend; Irene Rosenblum, her friend
Rosalind (Roz) Jacobs, her aunt [see chapter 4]
Gerald (Jerry) Jacobs, her uncle
Amy Falk, her cousin (Roz and Jerry's daughter)
Shirley Stevens, her mother-in-law
William Stevens, her father-in-law
Elyse Horvath, Betty's daughter and Barbara's friend
Barbara:At the age of forty-nine my mother was diagnosed with breast cancer. I was twenty-one. I have asked my husband, Bart over the years, "Was I a good daughter?" because I have blocked so much of her cancer experience from my mind. He reassures me I was. I am still embarrassed that never once did I call my mother during her ten-day hospital stay when she had a Halsted radical mastectomy. Nor did I visit. I am sure she was hurt, but she never said a word. I have no memories of our family discussing my mother's cancer experience other than one in which my father commented, "The skin graft goes this way. I thought it would go the opposite way." Life went on. I suppose that was how families coped in 1971.
It's odd. Even though from that point on I was followed closely by my mother's surgeon, had yearly mammograms, and lived for years with an albatross around my neck knowing it was only a matter of time before I got breast cancer, I never really stressed about it. Do I buy into the thinking that a person creates their own disease? Yes and no. I certainly did nothing to assist my body in staying healthy. I abused my body: I ate horribly, did not exercise and smoked a pack of cigarettes every day for twenty years until I quit at the age of thirty-five. By the time I decided, at the age of forty-one or forty-two to take responsibility for myself, the damage had already been done. Shortly after my forty-third birthday in July of 1993, my own cancer journey began.
Bart, her husband: Barb and I did visit her mother once in the hospital, but she just does not remember. Barb wanted to talk to her mother on the phone while she was in the hospital, but her mother wanted to be left alone. That is how she coped—by withdrawing. I won't say that I expected Barb to get cancer, but it was certainly a strong possibility with her family history and it was a concern.
Barbara: I will state up-front that I do not believe in coincidence. I will also state that I believe I have always had guardian angels watching over me. Several months prior to finding my lump I woke up one morning and said to myself, You need to learn how to meditate. I found a teacher and was taught Kundalini yoga meditation which incorporates physical and breathing exercises. While rolling around on the floor as I did the physical exercises I felt a lump in my breast.
Gillian, our goddaughter whom we had not seen in several years, was coming to visit the next day. My annual mammogram had been scheduled weeks earlier and my appointment was the day following her departure. We had a wonderful time, but I was worried and could not keep my fingers off the lump. It was hard, it moved and it hurt.
Something did show on the mammogram and I was told my doctor would be in touch. I got into my car, looked toward the heavens and quietly said with no anger, "Thanks, Mom." Within hours my doctor called, "You need to see a surgeon," and she referred me to a man whom a close friend of mine had recently seen and had been very pleased with. I think as soon as he examined me and looked at the X-ray he knew. Clearly showing on the X-ray was a sun with rays shooting out of it. When I scheduled the biopsy the voice at the other end of the phone mentioned something about my having a double mastectomy. I said, "I haven't even been diagnosed yet!" I found out later the voice belonged to the surgeon's wife. She back-pedaled quickly, but of course she knew. So did I, but until it was confirmed I could still hope that it was not.
Bart, her husband: Barb had had fibrocystic breasts for years. I was genuinely concerned with this lump because it protruded from her skin. During the meeting with her surgeon he was playing middle of the road, but I could see it written all over his face. I thought it would be a miracle if she did not have breast cancer.
Betty, her friend: Bart, Barb and her father were at my house for dinner. Her father and I were doing a great job reassuring one another Barb's lump was nothing to be concerned about. We never dreamt it would be anything but fine.
Barbara: I was scared. As I undressed and put on the hospital gown one of the nurses said to me, "Would you like to speak with so-and-so, one of our nurses? She had a bilateral mastectomy ten years ago." My comment was, "No thank you. I haven't even had my biopsy," as I thought to myself, What's going on? Is someone trying to prepare me or what?
I was awake during the biopsy. My senses were so heightened I could hear my surgeon cutting the tumor out of my body. I drifted in and out, but did hear him say to me that we should have a diagnosis in about twenty minutes. He had sent a piece of the lump to pathology for a frozen section evaluation. It seemed like only a minute before I heard the telephone ring. He answered. It was a moment frozen in time. My world turned upside down as I heard words I will never, ever forget. "Honey, I am so sorry. You have breast cancer." I could hear the blood pounding in my ears.
After I was dressed my family came in to see me. They stood around me in a horseshoe formation with faces that said, "Oh my God. She's going to die." They were all crying. Bart went to get the car. They all left with the exception of my father. He just held my hand. His face was a picture of anguish. The nightmare was beginning again. My mother had died in 1988 from ovarian cancer and now his daughter was diagnosed with breast cancer.
Bart, her husband: Not only was I worried, but Barb and I were the ones giving our family and friends moral support. When I saw her surgeon walking towards me I took one look at his eyes and I knew. We spoke privately. Then I told everyone there. They put on their "How do I act?" faces that people do who do not know how to react.
Betty, her friend: Bart is the kind of person who constantly makes jokes. When he called to tell my husband Johnny and me the news, that was the most unfunny he has ever been. He was not morbid, just factual. I felt sick, then really awful. I had told Barb she was going to be okay.
Stephanie, her friend: At the time, I was living in New York City and Barbara and Bart lived in Scottsdale, Arizona. Our relationship had been by telephone the past several years. I know many women who have had scares, but Barbara was the first to have breast cancer. Finding out was almost surreal. How can something that is on the TV news possibly happen to someone I know?
Amy, her cousin: I was crying hysterically. I thought she only had six months to live.
Shirley, her mother-in-law: One look at Bart's face said it all. I felt as though a hammer had hit me in the chest. It was not until my husband Bill and I left the hospital that I began to cry. All I could think about was the fact that Barbara had cancer. I know that Bill was not sleeping well. He told me he lay awake at night thinking about her, too.
Barbara: The following day I went for the standardized tests most of us have when first diagnosed: a bone scan to determine whether the cancer has spread to the bones, chest X-ray and blood work. The day after Bart and I met with my surgeon. I was petrified. "Had the cancer spread?" It had not. My tumor was a 1-cm infiltrating ductal cancer. My decision had been made years ago. I was definitely having a lumpectomy and radiation therapy. Never in a million years had a mastectomy ever entered into the equation. My surgeon recommended a bilateral mastectomy. He had no objection to my wanting to get a second opinion. In fact, he encouraged it.
The next several weeks were busy as Bart and I began to do extensive research. We met with an oncologist at a very well-known medical facility within minutes of our home. Without a doubt that was the worst experience of my entire cancer journey. The oncologist was rude, insensitive and treated me as though I were not even in the room. When he spoke it was to Bart. When we questioned something he said, he became angry and cut short our meeting. I left in tears. The only good thing to come out of the meeting was that he, too, recommended I have a bilateral mastectomy.
It amazes me that I decided to have a bilateral mastectomy; a modified radical on the breast with the cancer, a prophylactic (preventive) on the other. My reasons were numerous. I did not want to subject my body to either radiation or chemotherapy. X-rays were very difficult to read because my breasts were so dense. I had been lucky to find my lump so early this time. Would I be that lucky next time? It would also be very difficult for a plastic surgeon to match my full-sized D breast if I only had a single mastectomy. And perhaps the key reason was, I knew I had the strength to go through it once, not twice. Many people thought my decision radical; however, to this day I am so grateful to my surgeon for making a bilateral mastectomy an option. Why don't all doctors?
Bart, her husband: I disliked the medical facility we went to for a second opinion which reminded me of "production line" medicine, and I strongly disliked the oncologist whose attitude was condescending from the moment we met. It was quite obvious he was unprepared for the meeting and had reviewed none of the records Barb had been asked to drop off days earlier.
Barbara: I have since thought, How odd I never said good-bye to my breasts. It was a day of experiences and wonderful people. Two examples are: as I was being wheeled into the operating room one of the medical staff held my hand. I cannot express how comforting that was. I made terrible jokes to my medical team. Things such as never having breast pain again. The anesthesiologist who came to visit me the next day told me I had nearly given him a heart attack when I started in on Dr. Kevorkian jokes.
I was freezing when I woke up. My chest hurt terribly. Not from surgery, but from the bandage that was wrapped so tightly around me. My nurse was wonderful. She rubbed my back because it hurt. I was unable to lie on my stomach because of the surgery or my sides because of the drains. When Bart came to visit early the next morning he crawled into bed with me and we went to sleep in one another's arms. Neither of us had slept the night before. My husband is the most wonderful, gentle, caring man I have ever known.
Bart, her husband: Barb does not remember her surgeon showing us pictures of women who had undergone mastectomies so that we would be prepared. That is one of the reasons I went with her to all of her doctors' appointments. There were things both of us missed. I agreed with her decision to remove her breasts. Had she not done that she would have lived her entire life wondering, "When will I get it in my other breast?" I have no doubt she would have.
When her bandages were removed the day she was discharged from the hospital I knew the best way for me to handle it was to look directly at her scars and get used to them. You know what? I looked and thought, No big deal! She looked great. She just did not have breasts, and I thought, Barb still looks sexy! After awhile I no longer saw the scars.
Betty, her friend: It's funny how I thought I knew Barb, but I really did not. She used to make a big deal over a hangnail. I would think, God forbid anything major were ever to happen to her. Johnny and I thought she was a total wuss. The night before her surgery Barb, Bart, other friends Jay and Irene and Johnny and I went out to dinner. I was petrified for Barb. How was she going to get through this? I could not understand how she seemed to be doing better emotionally than I. Even Bart appeared to be fine, but I knew he was not. I did not show my feelings in front of anyone, but when we left the restaurant I cried the entire way home.
Neither Johnny nor I slept well the night before her surgery. We went to the hospital. I was sick to my stomach over what was about to happen to Barb. Everyone who came to support her that day gathered in her room until we were asked to leave. It was time. We gathered in the waiting room. Suddenly there she was. Sitting up on the gurney, like a queen in a parade waving to us. Smiling. I wondered, Who is this woman? Where is she getting all this strength? I had never seen her like that before and we have been friends since the mid-1980s. I had always thought I was the stronger one even though I cope by withdrawing when it's about me.
Jerry, her uncle: Roz and my two daughters Sheri and Amy never told Barb, but we thought, Why is she having such drastic surgery? Is it necessary?
Barbara: One day I said to Bart, "I want to learn Reiki" (a form of energy work that uses universal energy—like a laying on of hands). I have no idea where that came from particularly since I knew almost nothing about Reiki. I knew only that I had to learn how to do it. Several days later Bart and I sat in the audience as three women explained what it was. We signed up for the weekend workshop they were offering. A couple of months later I found my lump. Bart immediately began to do Reiki on my breast. I am convinced to this day the energy he brought forth prevented the cancer from spreading to my lymph nodes. His hands were red hot, and the sweat was running down both of us while he worked. "Your lymph nodes were slightly enlarged" is what I was told later by my surgeon. After the lump was gone the energy was no longer intense, only gentle.
Barbara: The telephone was ringing off the hook, and I was on it four to eight hours a day. It was exhausting to educate, console, bolster and ease everyone's fears, although they were marvelous support, which is why I never felt the need to attend a formal support group.
My terrier, Chanel, knew months before my diagnosis that I was sick. She would cling to me, literally stand on my chest and put her forehead to my forehead. Obviously she was trying to communicate. Since then I have learned to listen. When I took Chanel and our cockapoo, Odie, for walks I wore little tees. I didn't care if I looked like a boy. When we ran it was a weird feeling not to have breasts bouncing up and down. Actually I thought that was kind of cool. I am not saying I was happy not to have breasts. It was just a different experience.
Bart, her husband: Barb was the first in my family to have cancer, and the first of my generation to have a serious illness. They were shell-shocked when she was diagnosed. It's not that they handled it poorly, they just did not know what to do. Perhaps there was also a little bit of, "Thank God it isn't me." My parents were beside themselves. Barb is not a daughter-in-law, she is a daughter. Barb handled the whole thing magnificently. Even though she put on a great facade for everyone else I knew how scared she really was. It got to the point where she was on the phone so much I would take it from her hand and say, "I'm sorry. Barb has to hang up now and rest."
It's weird. I was scared, yet I wasn't. I don't know why, but I absolutely knew she was going to be okay. I was totally focused on Barb being emotionally and physically well because if she were, I would be, too. I never felt the need for any kind of moral support although I was touched when Arlene Rosen's husband, Mel (see chapter 5) called to say, "If you ever need anyone to talk to I'm here." I really was fine. I was not ready to lose Barbara and that is why I loved babying her the way I did. I did not care about her breasts. Barb is my whole life.
Betty, her friend: I felt a little as though Bart was feeling neglected. That is why when I came to visit I always brought sweets. Not for Barb, for Bart. He needed the attention.
Stephanie, her friend: I think too often men cannot deal with anything that has to do with a women's issue. Bart was and is completely involved in her life on a level most men would never delve into because they think it has something to do with their own masculinity or some such nonsense. It is marvelous that Barbara can have a relationship with a man who has no qualms talking about a woman's body, and should not because what is happening is not a sexual thing. Bart is not talking about his wife's sexy breasts. He is now talking about something that is creating a problem with her health. Period. Bart is what every one of us would want if we had to go through something like this with a spouse.
Roz, her aunt: Of course Bart was concerned, and he was definitely stressed and worn out, but under the circumstances he seemed to be handling things well. He never talked to Jerry or me about his fears and he always reassured me when we spoke, "Barb is going to be fine."
Irene, her friend: The night the six of us went out neither Jay nor I wanted Barb to know how upset we were. Jay does not know how to deal with things like this. Maybe he felt vulnerable that it could happen to me. And I kept telling myself, She's going to be fine.
I went over to visit as soon as Barb got home from the hospital. The night before I was so worried. On the drive over I was very nervous. Then she opened the door and was so bubbly. She had such a good attitude it really helped me, which is so stupid because I should have been the one helping her! But I was afraid. I talked to Bart a lot. He was so concerned that Barb was overdoing it. He was like an old mom, but I think that was because he was scared and felt as though he had no control. I believe he also acted as he did because of the love he has for her. That is why he is so overprotective.
Barbara: Since my cancer diagnosis I have chosen to partner with my doctors. I asked lots of questions and disagreed with some of the recommendations, but I always listened to what they had to say and then did what I wanted to do. Because of my pathology and the tumor's size, my surgeon felt chemotherapy was unnecessary. I wanted to get a second opinion. He referred me to an oncologist he trusted who also did not feel that I needed to do chemotherapy. Every once in a while I wonder, Did I make the right decision?
Bart, her husband: Barb had some great doctors. I think a lot has to do with the patient having a positive attitude which she did. We were well read and asked the right questions. We made it clear that we wanted straight answers. Because of that her doctors spoke to us on a mature and intellectual level.
Stephanie, her friend: I am a magazine junkie. Anything I read that pertained to breast cancer I sent to Barbara. That was my way to be involved since I could not physically be there. She was never a victim, and took control from the very beginning. But that is just how she is. She quizzed and challenged her doctors and made them rise to the occasion. But then I do not think a person should ever hand over control. There were moments when I wondered if her being so upbeat and in control was how she disguised her fear. I do not know.
Barbara is the kind of person who consoles everyone even when she is sick. Neither she nor Bart ever had a "Woe is me" attitude. Everyone took their cues from them. Their attitude was: "Here are the facts. Here is what we have to do. Here is what we are going to do." With some people their illness becomes their crutch and life becomes a tragedy. Barbara took this thing and said, "You know what? I am going to do something with this. It will not control my life." And it has not. She took control when she made the decision to remove both breasts. Fear would have caused her to do as little as possible. She had the courage to do what she did because she said, "I am not going to go through this again in five years. I do not need these breasts that badly."
Roz, her aunt: None of us were ever afraid to ask Barbara questions. She was always bringing it up, "So. What do you want to know?" She always seemed to have the answers. Her openness and willingness to talk about her illness let the family and their friends know that it was okay to talk about it. Otherwise it becomes hush, hush.
Amy, her cousin: I always wondered, Could Barbara have had chemotherapy and not had a double mastectomy? Should she have had chemotherapy? I thought it odd she had not had it.
Elyse Horvath, Betty's daughter and Barbara's friend: I was eighteen, in college and invincible. It was not until my mother explained to me how serious breast cancer was that I became frightened. Barb always told my mom things like, "I'm fine. Let's move on and talk about life." She was totally positive which helped me to feel positive and took away some of my fear. When I saw her for the first time, she did not look unhealthy, but she did not look or act like her normal chipper self. There was something different about her. It wasn't a huge change, but she had somehow shifted. She has never gone back to how she was before this happened.
Around the age of twenty or twenty-one it finally sunk in, This could happen to me. Barb having had breast cancer made it more real. It was at that time that I went to my doctor and asked, "Please teach me breast self-examination. What am I looking for?" I was so cystic I never knew which were the good lumps and which were the bad. I had seen the card in the college dormitory showers that explained how to do a BSE, but it did not explain what a lump felt like. He gave me a wonderful explanation: "You are looking for a frozen pea in a bunch of cottage cheese."
Bart, her husband: It was fantastic that Barb's friends all over the country were concerned, and other than one or two of them, they rose to the occasion. Knowing who they are I expected no less and would have been shocked if they had not. Barb deservedly got the support she did; however, I was grateful that she did and loved it that she got so much attention: the cards, flowers, gifts and their good wishes. Our friends and family would have done anything for us. They always called to see how both of us were doing. It probably would have been helpful to everyone, ourselves included had we accepted their offers to cook us meals, even clean the house but Barb always said, "No." She did not want to be an imposition. We had no right to make assumptions or decisions for anyone else. I knew it would make them feel helpful, but that was neither the time nor the place for me to start lecturing Barb.
Betty, her friend: I have told so many people that if anybody had to have a husband behind them Bart was the perfect one. He would make things lighter, although sometimes his humor went a little over the edge. An example was, "So what if she doesn't have breasts? We'll get new ones!" This was said around the time of her mastectomy surgery.
I am not sure when I made the decision to be at every one of Barb's surgeries. I would sit with her until she was physically being wheeled into the operating room. My being there turned into, "If I am not there something bad will happen." I felt as though I were her good luck charm. Perhaps I felt a little guilty: Barb has this and I don't. The least I can do is be there for her.
I truly believe she had the support she did because of her positive attitude. Had she fallen apart people might have had a tendency to stay away because then they might have felt more vulnerable or scared. Because she was so strong everyone felt comfortable around her.
Irene, her friend: When something bad happens to a person I care about I become obsessed with it. I called Barb every day to ask, "What can I do for you?" I just tried to be as supportive and good a friend as I knew how to be.
Barbara: There was never any question that I would have reconstructive surgery, but as with everything else that is a woman's choice. I healed remarkably quickly, and within two months my surgeon gave me the go-ahead. Networking with other women and nurses, who are a wonderful resource, I asked, "Who is the best plastic surgeon?" I interviewed four. Because I was so slender my choice was limited to using expanders that would first stretch my skin and then a later surgery would replace the expanders with permanent implants. I was fortunate in that I had a choice of using either silicone or saline. A little arm twisting by two of my doctors convinced me to use saline. I have a very high pain threshold. In my opinion, on a scale of one to ten with ten being the highest, the bilateral mastectomy was a one, reconstruction was an eleven. Each time I was filled with saline solution to expand my breast area my chest and back would spasm for days. Sleeping was miserable. There was only one position available to me and that was on my back because I had those horrid drains again. When the permanent implants were put in I had a complication. Because my surgeon did not use drains this time, fluid collected in and above my breast on the side I had had my axillary lymph nodes removed. As a result a wall of scar tissue built which caused my implant to seat crookedly and also caused (in my opinion) the lymphedema (swelling of the arm) I am plagued with today.
My surgeon had no intention of correcting the problem. I insisted that he do a third surgery as I had no intention of living with a crooked implant the rest of my life. He was not happy, but frankly I did not give a damn how he felt. Additionally I insisted that he remove fluid from both implants because I felt I was too large. We had fought about size from the beginning. He admitted, "I like big breasts." We disagreed over the color my areolas should be. I wanted a pinky/peach color, which was my natural color. He wanted brown. I always got my way, but why don't doctors listen to their patients? Even he admits the end result is fabulous.
Betty, her friend: Barb never offered to show me her scars, and truthfully I never wanted to see them. When I jokingly said to her one day, "Show me," she said, "Not on your life!" She has since told me, "I wish I had shown you." She thought it might have been helpful for me to see what a mastectomy looked like so I would not be frightened if it ever happened to me.
Bart, her husband: I am saying this as a husband, but of course it pertains to any partner, male or female. When someone you love gets sick it is a time when the man needs to rid himself of ego, selfishness and any of his own "self" issues. He needs to concentrate 110 percent on making things as comfortable and easy for his wife as possible. She should be doted on. I am sure a lot of men run off to the golf course or their business and hide. They are scared and don't know what to do, but that still does not make it right. He needs to support her. A grown man should have the maturity to face a problem and deal with it. I understand that each of us copes differently, but I think a man who runs, who does not touch his wife or does not talk to her should be ashamed of himself. It may be corny, but remember those wedding vows? "In sickness and in health." It is his responsibility to be there. If he has a problem, he should seek counseling or go to a support group. Do something. I think the biggest problem with men is that they do not know how to deal with something like this. They do not allow their feminine side—the emotional side—to emerge.
People need to be educated that they do not work for the doctor. They are paying a doctor to work for them. If they have a question, they should ask it. If they get a bad feeling about a doctor, they should leave and go elsewhere. The children can get involved. There is no reason they cannot pitch in with household chores. Everyone in the family should be involved.
Barbara: Lymphedema is caused by the removal of lymph nodes. It can develop immediately or years later. Since mine appeared in May of 1994 I have been on a mission to cure it. Conventional medicine says it cannot be cured. I tried physical therapy. That did not work. I used a pump for over a year to try to squeeze the fluid from my arm. That was ineffectual. My arm looked sick and was becoming worse. It was quite swollen, white, and very mottled in color. I agree that conventional medicine cannot cure lymphedema; however, I believe alternative or holistic methodologies can.
In December of 1994 I began to work with a man who practices a form of acupressure called Jin Shin Jyutsu. Acupressure works the meridian points of the body with fingers, not needles. I asked him, "Why can't we create new pathways for the lymphatic fluid just as the heart creates new arteries when there is a blockage?" He did not think that unreasonable. Other practitioners have also assisted in this endeavor including my friend Linda, who is an extraordinary massage therapist, and another woman I have become friends with, who is now doing energy work to complete the creation of new passageways. We are all working toward a common goal, "What will turn the pump back on?" Major progress has been made. My arm is about 70 to 80 percent back to where it was before the lymphedema began. The color is normal, my arm rarely hurts and although my forearm and wrist are still swollen, the upper arm no longer is. It continues to improve. My arm is my teacher. I am certainly not happy that I have lymphedema; however, had it not occurred I would not have gotten as deeply into alternative medicine as I have. It has changed my life.
Barbara: I believe in conventional medicine. I am vigilant about getting my annual checkups (gynecological and cancer-related). My wonderful general surgeon whom I used as my "cancer doctor" recently retired, and I chose to replace him with an oncologist. I felt it was time to bring an oncologist on board. My other doctors are holistic practitioners. Other than one naturopathic physician I see on a regular basis, none of the other practitioners holds a formal degree. Many specialize in energy work. These are the ones I have chosen to help me rebuild all my bodies: physical, emotional, spiritual and etheric. I no longer run from practitioner to practitioner looking for the "magic cure." They assist me to heal myself. It has taken me a long time to realize that the healing power resides within.
Bart, her husband: For about six months to a year after her diagnosis Barb jumped on every concoction, every alternative thing imaginable because she was so scared. Although I felt as if she were grasping at straws, I thought it was a perfectly normal reaction. The point came when I finally had to tell her she was overdoing it.
Amy, her cousin: I would probably do some of the things Barbara did, but a lot of what she does is farfetched. For instance, using the pendulum, what she calls "dowsing." It is the energy work and things that are intangible that I have a problem understanding.
Stephanie, her friend: Barbara's cancer experience took her to another level spiritually. She was a woman from the East Coast with her diamonds, her Louis Vuitton handbags and expensive cars. For her to become such a spiritual, meditating individual is quite a departure from who she was. This is not a venue her mother would have chosen for her. Her cancer experience allowed her to step outside the world she functions in and say, "You know what? I can still have all these wonderful things in my life, but there is a spiritual side to me, too. Let's explore that." This experience has been such a gift. It has opened so many doors to new ways of looking at the world. It has enriched not just her and Bart, but everyone who knows them. She has grown in ways she could never have imagined. We have all learned to be better people and friends because of it.
Barbara: Bart and I are partners in business as well as being partners in marriage. One day about six to nine months after my diagnosis I walked into the office. It was early, and only Bart and I were there. I do not remember what precipitated the argument but suddenly he began to scream at me. He was like a volcano whose steam had been building and building until suddenly the cap blows off. The vein on his forehead throbbed, his face turned beet red and I was frightened beyond words that he was going to have a stroke or heart attack. The dam burst. All the feelings he had kept bottled up inside came pouring out. He began to cry. He was so scared I was killing myself because I was running so hard and so fast that I was not taking care of myself. I sat on his lap, stroked his face and told him how much I loved him. That was the moment I realized how scared Bart was. That was also a turning point for me, and I believe for Bart as well.
Bart, her husband: Barb's father and I never had any deep conversations about Barb. I know he was torn up inside. It was one thing to have to go through it with a wife, but with a daughter? I do not think he had a clue how to help either my mother-in-law or Barb. I am sure he felt helpless, but he did the best he could. He was there for support. In Barb's case I think he backed off too much, but one of his idiosyncracies was, "I am not going to intrude or interfere." My father-in-law was a man of his times.
Barb began to get involved in everyone's lives again, counseling them, allowing herself to be sucked dry. She just kept running. The phone was once again ringing off the hook. Finally I told everyone, "You have to stop calling so much. Barb needs to rest." She was so exhausted she looked ill. She had also been getting a lot of phone calls like this one. "Hi Barb. How are you doing? My sister's cousin just died of breast cancer. She went really fast. Boy, aren't you lucky!" I know that is not the way these conversations were intended, but people need to think before they speak. The last thing a person who has a serious illness wants to hear is a story about someone with the same illness who has died. It's okay to talk about the illness. Just do not tell horror stories. Barb broke down in tears one day. "Doesn't anyone ever survive?" That is one of the reasons I cracked down on her.
Maybe people thought I was being overprotective, but I just wanted her to take care of herself and she was not. That is why the incident occurred that day in the office. I was doing everything in my power to keep her well, and she was doing everything she could to exhaust and kill herself. After I vented my pent-up emotions I felt as though I had rid myself of an ocean of poison. Her actions were making me physically sick. Finally I got through. Barb has finally stopped mothering the world and is now taking care of herself.
Betty, her friend: Some people become stronger, others become bitter or resentful when they have an experience such as Barb's. Some will not use the knowledge they have gained and turn it into something positive. Barb has done everything positive. I do not think there is anything she did not cope well with. She amazed me, but she amazed my husband, Johnny even more. Barb was his first exposure to a strong woman in crisis. As things progressed Barb only became stronger and stronger. Before she was wrapped up in her life, her goals and not really in tune with anyone else. Now her energies are more focused and she has become a more caring, sensitive person.
Stephanie, her friend: When a woman is beautiful no one wants to know what she is all about. They just want to be around her because she is beautiful. One of the first things men in particular did with Barbara was to look at her breasts. This has allowed Barbara to become more than just her breasts. Not that she ever was only about her breasts. Even though she has always had about herself a Marilyn Monroe-ish naughty little girl aura that attracts men, she is now about the whole person.
The fact that nothing about her cancer experience was morbid is almost refreshing. I don't think that took away any of the severity of what was happening to her, but it allowed us to deal with it. I am a firm believer that it is not necessarily the disease that kills us. Rather it is the diagnosis—the belief system. I have wondered, How would I handle something like this if it were to happen to me? I think I am a strong person, but I hope I am never tested, because I do not know if I really am. None of us does until we are faced with our own crisis.
Irene, her friend: Barb had such positive energy and such a good outlook that it made it easier for me to deal with. I wondered several times if she was pretending or putting on an act, but I really do not think so.
My father, who is a retired physician, began to send me all kinds of articles on breast cancer. We talked about Barb, but there were times I did not understand things. No matter how stupid I thought a question was, Barb always answered it so that I did understand. How can a person feel comfortable if they do not understand what is going on? Sometimes ignorance can create a wedge.
Barbara: Arlene Rosen told me several key things early on in my diagnosis. The first was that breast cancer is not a death sentence. The second was that I would go through different stages. She was right. Once my breasts were removed I was almost giddy with relief that the cancer had been cut out. What's the big deal? It's gone! Until several weeks later I began to bolt upright in bed at two o'clock in the morning, Oh my God. I have cancer. I'm going to die! That lasted about two years; however I still carry a little, tiny kernel of fear that it could come back. I sought professional help one time to try to rid myself of that fear and came to the conclusion that anyone who has ever had a life-threatening illness will always carry that kernel of fear.
Several years ago I had a lump in my neck that appeared to be a swollen lymph gland, yet I had not been sick. At first I obsessed over it. Am I having a recurrence? I finally asked myself a hard question: If it is cancer how do I feel about it? I came to the conclusion I was not afraid to die because I know there is something wonderful on the other side. I do not want to die. I have too much left to accomplish and besides, I want many more years with Bart. This is an interesting and very liberating space to be in. I have come to accept that my cancer could come back, although I do not think it will. I still have that little kernel of fear, but I am okay with that now. And whatever was swollen is long gone.
Two things greatly impacted me early on in my cancer journey. The first was told to me by two women who do not know one another and who live in different states. "Why do you think you got cancer? Would anything else have gotten your attention?" The second was, "What do you think this is all about?" It took me a long time to realize I was not afraid of dying. I was afraid of living.
Bart, her husband: I was scared. No one could give me that guarantee in writing that Barb was going to be okay, but I just knew that she would. Still, there was that little twinge of, "What if?" It has now been almost four years since her diagnosis and I can honestly say that twinge is gone. When Barb tells me about someone she knows who has had a recurrence, or who has died, I cannot and do not worry that it will happen to her. I have been living with that statistic ever since her mother's diagnosis. I truly believe, "What is meant to happen will, and we will deal with it then." I meant it when I said Barb is my whole life. I would give up everything just to have her in it. But if I were to lose her I would have no regrets. We have had an incredible twenty-seven years together. I am not ready to lose her, but I would not wake up the next day and say, "Gee. I wish we would have done that, or I wish I would have said this." Because we have.
Betty, her friend: Barb had such an impact, not just on Johnny and me, but on our children as well who are now fifteen, twenty-one and twenty-five. Her experience opened our eyes that bad things can happen to people you love. I tend to stuff my feelings when something bad happens, and I admit they are still stuffed pretty deep. I did not want to show Barb any sign of weakness or fear on my part because I would have felt selfish. Besides, I did not think she needed to hear that. Maybe I should have. I am scared of getting breast cancer. That never goes away. A friend's sister died of cancer (not breast) when I was in my early twenties. She was my youth scare. Barb is my middle-age scare.
Stephanie, her friend: On a conscious level I do not think Bart believed that Barbara would do anything but come through this. He had total and complete belief in her. However, they are so close that somewhere in the back of his mind there had to be that lingering fear. I suspect he did not talk to anyone about his fears because he did not want to hear any words from anyone that might stimulate fear he did not want stimulated. It was much easier to move forward and not think about losing her. As for me, I never had any fears that Barbara was going to die, but I can't say that in the back of my mind somewhere I do not worry because of her mother's history.
Shirley, her mother-in-law: I pray for both Barbara and Bart. I want them both to be well. And I am selfish. I want my son to have his wife.
Stephanie, her friend: Of all the people I know who have had bad things happen, or who have gone through traumas, Barbara was the one who said, "Okay. What am I going to get out of this besides survival?" She took this experience and made it her calling in life. This is what Barbara Stevens is all about now. She is totally dedicated to breast cancer. It has changed everything about her. She and I are still silly women who like to laugh and have a good time, but there is a depth to her. It is like some books have a beautiful cover, but there is no story inside. Or the story is poorly written, or has no depth. She is a beautiful book cover and the story just continues to be written. I think we have all been on this journey together. Each of us does it in our own way.
My Postscript, February 2000
I lived twenty-five hundred miles away from my parents when my mother was diagnosed with ovarian cancer. I was not there for any of her treatments, nor when she died. In February of 1994 my father was diagnosed with terminal lung cancer. Bart and I, his hospice nurse and companion were with him when he died seven months later. He gave Bart and me such a gift. He taught us how to talk about death and dying. He allowed Bart and me to share his death with him, a gift I will treasure forever. We need to teach our children not to be afraid of death. They need to know that death is but a part of living. My father is always with me. He helped me to have the courage to write this book because I had experienced through him living the death of a loved one. He taught me not to be afraid.
Writing this book has been the most difficult thing I have ever done. But because of it I have met the most extraordinary women, men and children. None of us wants to join this "sisterhood," but as Lolly Champion [see chapter 16] said, "Once we are a part of it we never want to leave. And we mourn our sisters who do." Too many of the women survivors (I do not know about the men) I interviewed have died. In my heart they are still alive. I am so thankful that I knew them. For know them I did. We shared our stories with one another. We laughed and we cried. They wanted their stories to be heard so that their experiences would help others. Even if it was only one person.
I have grown so because of my cancer experience. I am not the person I was. And I am grateful for that. My life is so much richer now. I have goals, but they are no longer what they once were. Now they are humanitarian. I walk my dogs early in the morning and look at the beautiful Arizona sunrises. And smile. I look upon my husband's face and thank God every day for allowing me one more day with him. And I look deep within myself and know that I am happy. That I am on my path and doing what I am supposed to be doing. My life has been blessed. To each and every one of you who has been and is a part of my life I say—thank you.
(c)2000. All rights reserved. Reprinted from Not Just One In Eight by Barbara F. Stevens. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442.
Posted September 18, 2001
As a physician who specializes in disorders of the breast of which breast cancer is the most important, I can highly recommend this book to families and friends of women with breast cancer. We can all learn from this beautiful book.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted May 2, 2001
This is a book that everyone must read!!! It is an insightful, real-life, and a smartly-written look into the subject of breast cancer and how it effects millions of people everyday. It brings to reality the true life experiences of both women and men and their journey's through breast cancer survival. I would recommend this to everyone-men AND women. This book is written with heart, soul, and truth that must be heard and recognized.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.
Posted May 2, 2001
As a breast cancer survivor featured in the book, Not Just One in Eight, I highly recommend that people read it. I am overjoyed that women know that choosing alternative methods is an option in their medical choices. Each story in the book is unique and shows that every one of us has a different journey. Please read the book. It gives insights and encouragement you may need now or in the future.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.