I have been afforded the opportunity to experience breast cancer from three different vantage points during the last 30 years: first as a young teenager who watched with fear how my mother's dearest friend coped with a diagnosis of stage IV breast cancer; second as a nurse providing direct patient care to women with this disease; and third as a patient myself. You wonder why I would use the words "afforded the opportunity"? Because I'm a believer that we must look at the glass as half full and not half empty...yes, that's one of the reasons that I can now confidently say that I am a breast cancer survivor. Early in my teenage years, a couple moved to a residence not far from our farm. Though "Miss Bertha," as I chose to call her, was ten years older than my mother and had no children of her own, she, herself, had the spirit of a child. Despite the fact that this woman was old enough to be my mother (or even my grandmother) she became a best friend to me. Her world took on a different perspective after she had gone to see her doctor about an open sore on her breast that did not heal. Unfortunately, 30 years ago women were not as well versed on the warning signs of breast cancer and signs like: "Go get a mammogram once a year for the rest of your life" was not seen on TV commercials as we do now. So although this was a well educated woman, she didn't realize that the bloody drainage from her nipple, a sore that would not heal, and a palpable mass in her breast meant major trouble and the beginning of what would be a traumatic experience for her as well as for those who loved her. When given the verdict of advanced breast cancer, Miss Bertha was dumb founded and perplexed. Her doctor told her that though he would treat her aggressively with what treatment was available he didn't anticipate she would live more than 5 months and recommended that she "get her affairs in order." She told him that she wouldn't have time to get her affairs in order because she would be too busy living and that she had made a list of her personal goals she intended to achieve before she left this world. Her first goal, she said, was to outlive him, her doctor. My mother and I feared that we would lose her. People in the community didn't talk much about it because it was very taboo to discuss "breast cancer." You might say that someone was ill and even say that they had cancer but not state that it was breast cancer. Miss Bertha had a total radical mastectomy and she for the most part remained cheerful and her old upbeat self most of the time. After she was home for about a month after her surgery, she asked me to look at her incision to make sure that it was healing okay. I remember her saying to me that she felt comfortable with me looking at it because she knew that I was planning to go to nursing school and would probably know if it looked like it was healing properly. What I really think that she was seeking that day was acceptance of her appearance and not a medical opinion about her incision. I had never seen someone's scar after a mastectomy before and did my best to maintain flat affect and not show shock. I was shocked though. Her cancer was advanced enough that the surgeon felt the need to remove the breast, chest muscle, lymph nodes and three ribs which meant that skin had to be grafted to her chest wall to close the wound. I could actually see her heart beating. It was very scary to me. Despite my inner feelings and youth I mustered up the courage to say that I thought that it "looked very good and was healing well." She was so pleased to hear me say this that she hugged me very close despite the fact that I am sure her chest was very tender. Having someone who loved her accept her as she was, was very important. She was not blessed with a loving husband to help her through such an experience, so she relied on her friends for support. Crises such as these either bond a husband and wife closer together or pull them further apart. Her husband was not a very good supporter. But, what is that old saying, "Love may be blind but the neighbors ain't," fits for many marriages. And perhaps they were happy with one another...They just didn't seem to demonstrate it to the public eye. Miss Bertha had a friend who had had bilateral mastectomies for cancer done a few years before her own surgery. It was intriguing to watch these two women when they were in each other's company. They had a special relationship that was overtly noticeable to other observers. They both would spend hours talking about their cancer and especially about the funny things that had occurred as a result of getting breast cancer. Some people were confused about why they would want to laugh about a subject that was so serious. But it was clear to me that they used laughter as part of their own personal treatment as they both continued their battle with this disease. There are two stories that stick in my mind though I heard them more than 30 years ago. The first one is about Miss Bertha's friend. She told us that after she had had her second mastectomy she realized that she could now be whatever size she wanted to be. She bought an inflatable bra and was very happy with it for a time. It was light weight and allowed her to do her gymnastics routines. She was a teacher. One day she was flying out of town to see a relative and as always had her inflatable bra on. Prior to her surgery she was a very buxom woman so she usually had her bra inflated to the max. This was apparently an unwise move if you were planning to fly in a plane. There are lots of signs in the airplane instructing you to do certain things or not to do certain things. You know, signs that tell you where the exits are, signs that tell you not to smoke. There is even a demo of what to do in the event the plane is about to crash. But there are no signs that say, "If you are wearing an inflatable bra we strongly recommend that you partially deflate it before take off because the pressure in the airplane once we're in the air will cause it to explode." Yes, you guessed it. She said that they were airborne about 15 minutes when were chest started vibrating and moments later-- POW! POW!, her bra exploded. Despite this shocking experience she remained calm and rushed to the bathroom and put wads of tissues in her exploded bra to replace the air that was now gone. And she merely chalked it up to an experience in the life of a breast cancer survivor. A few months after Miss Bertha's mastectomy, she told me that she was having a lot of trouble getting full range of motion back in her arm so she decided to take up golf. She found the routine post-op exercises to be silly (walking up the walls with your fingers for example) so she decided that she'd rather be doing a real sport to help her regain her arm strength and motion. She decided that she would need a golf instructor to teach her the proper techniques in golf so she signed up for lessons. The instructor was totally unaware as to why she had decided to take up golf and just assumed that she was interested in learning this sport. He was not very pleased with her progress though and was constantly telling her to "swing all the way through." One day, about four weeks into her lessons, she did swing all the way through and out fell her prosthesis onto the grass. (This predates mastectomy bras with pockets and also predate prostheses that resembled a breast. Hers actually looked like a large thick jelly fish.) She said that she looked at that object lying on the ground in front of her as if it had landed there from outer space. She couldn't bring herself to pick it up because she didn't want him to know that it was hers and what exactly it was. He took the initiative and bent over and picked it up. As he handed it to her he said, "Why didn't you tell me that you have had mastectomy surgery? No wonder you're having so much trouble swinging your arm all the way through." How marvelous it was that this man took the steps to make her feel perfectly comfortable with herself and even more importantly with him. I never met who this man was but I admire him to this day. These two women had a special relationship which grew even closer when they both became breast cancer survivors. Both of these women have now past away due to their cancer. Their survival as recoverers of breast cancer I guess was not meant to be permanent, but they truly made the most of their lives and touched the hearts of many who knew them. Miss Bertha was given a prognosis of having less than a year to live. Not long before she died she told me that she had always wanted to have a child of her own but had not been blessed with such an opportunity. She felt as if I was the child that she never had and often times referred to me as her "borrowed daughter." She admitted that there were occasions on which she said that she even took the liberty of telling acquaintances that I was her real daughter. She said that she was glad now that I wasn't her daughter by blood because she didn't think that she would be able to deal with the thought that she might pass breast cancer on to me genetically. She said that she would have felt very distressed if she had increased my risk of getting breast cancer. At the time that she told me this, ironically enough, I already had breast cancer but didn't know it yet... Upon completion of high school I attended Easton Memorial Hospital's Nursing School and earned my RN degree there. It was common practice in the late 1960s and early 70s to go into surgery for the assessment of a breast lump not knowing if when you awakened whether you'd discover that your breast was still there or had been totally removed. This was during a time that patients were asked to sign a consent form stating that a breast biopsy was going to be done and depending on the results of the frozen section, the patient may awaken having had a mastectomy. Of course, if the biopsy were negative then nothing beyond the biopsy was needed. For the patient it was fear of the unknown in the literal sense. Going under the knife and not knowing until you awakened whether you had both breasts or not must have truly been a nightmare. As a student nurse and later as a registered nurse I grew to know the look of fear on these women's faces and always felt thankful that I was not such a patient. I recall the first patient that I took care of in the recovery room following her biopsy that was immediately followed by a total radical mastectomy. She awakened with a look of absolute terror on her face and as I was checking her blood pressure she grabbed my hand and asked in a frightened voice, "Tell me. Is it there? Is it gone? I don't want it gone. Please tell me that my breast isn't gone." My eyes connected with hers in a way that branded the image of her frightened face in my mind still to this day. My silence told her the answer that she didn't' want to hear. And her sobbing could be heard like the cry of an injured animal trapped in a dark cavern. All that I say was that I was sorry. Sorry that her fears had been realized and sorry for me that I was the bearer of bad news even though I never really confirmed for her that she had had a mastectomy and that more awful treatment for her advanced breast cancer was to follow this agonizing day. She cried. I cried. Of course there were also those patients who awakened with that same horrified look but were given good news. "Yes, your breast is still there. Your doctor will be in shortly to talk with you." These women were so elated to have confirmed for the them that "it" was still there that they felt no post op discomfort upon hearing the news. Their behavior was one of euphoric laughter and happiness as if they had hit the lottery while under anesthesia. With each patient that I have taken care of who have had breast cancer, the look is unmistakable. And I had always felt thankful that I was the nurse and not the patient. In 1992, at the age of 38, I found a lump in my breast. I didn't feel particularly alarmed about it because I had experienced lumps before and on those occasions had been told that they were cysts which were successfully drained. I assumed that this lump was like all the others; benign and nothing to worry about. After having spoken to my gynecologist I had a mammogram which confirmed that the lump I felt was only a cyst. However, in my other breast, there was a nonpalpable mass that appeared. After additional xrays were taken I was told that it was probably benign but may be smart to be "absolutely sure" and have a biopsy done to remove it. Still I felt no need for alarm. After all, I had no history in my family of breast cancer. I don't smoke. I don't drink. I'm in relatively good health so why worry over nothing? I chose my own surgeon and he did the procedure 2 weeks later. Even though during the outpatient surgical procedure the doctor told me that my breast was far more diseased than the mammogram had shown, I still wasn't worried. No frozen section was done and I was told that I would be provided the results in a week and that in the meantime to not worry. And I didn't worry. So when I learned that the biopsy showed breast cancer and that the cancer was on every path slide and there were no clean margins I was in shock. I felt like the Grim Reaper had swept down on me and was about to hold me captive for some unknown period of time...maybe even permanently. My husband was equally stunned by the news but remained steadfast in his support and optimism. I clung to him like a baby chimp does to her mother. My parents were devastated when I told them I had cancer -- my mother was definitely the hardest hit. She had already buried her father due to prostate cancer and now she feared that she would do the same with her "baby." It was more than she could emotionally deal with at that time. After careful review of my options for treatment I chose the sound advice of my surgeon who recommended a mastectomy due to having multifocal disease. We were very comfortable with this decision. The next hardest thing was to tell our daughter, who at that time was age 12. It seemed so ironic that only a week preceding my biopsy I was in the store with her having her fitted for a bra. We wanted to be very honest with our child. She would not benefit from having secrets like this kept from her. She needed to know the facts so we could help her deal with this news as well. When I sat down with her and explained the sequence of events from my finding a lump, to having the x-rays, to having the biopsy and now learning the final verdict she listened to me very intently. Once I reassured her that I would do everything I could too become a survivor and not die as some of my friends who she had known did, she then asked me questions that truly amazed me. The first was, "Will the doctor move your right breast to the middle of your chest." I told her "no" and when I inquired as to why she thought this she said that she "thought that I'd lean to the right " with my left breast gone." When I explained to her that I would be getting an artificial breast to wear in a special bra designed for holding such an object she was even more intrigued. Her next response was, "Gee Mom, that sounds neat. You know how you worry when you go to the ATM Bank machine and withdraw money that you worry that someone will take it? Well , you can put your money in your bra pocket and no one will be able to steal it." Gracious sakes! Now there's a valuable tip. Probably not one that I would write into Woman's Day magazine to share but nonetheless an important piece of information. Of course I thought that if I did as she suggested and put my money in there I probably would empty out the grocery store check out lines when it came time to pay my bill! I thanked her for her advice anyway. What our child had done without my prompting would have a direct impact on my recovery, both shortand long term. She had helped me find my sense of humor. Just as Miss Bertha and her friend had used it to get them through the tough spots, so would I and my family. From that day forward my husband and I sought out ways to laugh. (He was clever to always let me initiate the jokes realizing that I may not always be in a joking mood.) And though Miss Bertha and her friend had already passed away, I came to now realize that they had both served as mentors for me. I just didn't know it at the time... My surgery was performed on July 14, 1992. My husband and I referred to my surgery as Transformation Surgery; that's because I was not just having my breast removed -- I was instead being transformed from a breast cancer victim into a breast cancer survivor. (Remember, I'm one of those people who sees the glass half full -- not half empty.) Taking this approach seemed to be the most emotionally healthy one for us. My husband was at my side when I awakened in the recovery room. He was smiling just as he did the night I completed a very difficult birth and our daughter was born. My parents shortly there after also appeared and looked relieved as well. My prognosis looked very optimistic. I was going to be a survivor in the literal sense. Once out on the nursing unit I could not help but feel a strange sense of de jas vous, except this time, rather than being the nurse giving care to a mastectomy patient, I was the patient. I had planned to be an overnight patient and go home the next morning with bandages, binder and my 2 hemovacs attached to me. The nursing unit was extremely busy that evening. I could tell by the fast paced steps of nurses, the sounds of gurneys being hastily wheeled about and such that there were numerous patients that needed a lot of attention. My personal objective was to be as little bother as possible. My husband was staying fairly late with me anyway and could help me to and from the bathroom, and helping me with my bouts of nausea. My nurse, Myck, popped her head in and out to check on me and empty my drains and change my IV bags. She was pleasant but also extremely busy and moved swiftly up and down the halls that night. When my husband had left me at 9 p.m. the room grew quiet. The residents popped in for a dressings check and asked a few questions, and by 10:30 p.m. I was at last alone...alone to reflect on exactly what had happened to me that day. At that moment, my nurse reappeared to check my IV and drains one last time before change of shift. She recorded the amounts in each container then looked down at me and asked me how I was doing. Perhaps it was the impact that making eye contact has on one's emotional feelings, perhaps it was simply the realization that I had lost my breast that day...I don't know what triggered it. Even though I told her I was fine tears ran silently down my face. Though it was time for her to go off shift after having put in a very hectic night, though there were more patients'IVs she needed to measure, she put my side rail down and sat on the bed with me and held my hand. At first she didn't speak a word...she waited for me to initiate the conversation further. I told her that I never imagined myself being a cancer patient. I always felt confident that I would be the nurse providing care and not the recipient of such care. But now the tables had turned and I was dealing with the physical and emotional impact this experience had thrust onto me. She sat there with me and stroked my hand. As she nodded affirmatively showing me that she was carefully listening to every word a knock came to the door. It was another evening shift employee letting Myck know that it was time to give report. Her response to this person was, "Tell them they'll need to wait a little while. I'm with a patient." As the woman at the door left, I smiled at Myck. This was a woman who I had never met before until tonight and I knew that I would remember her forever. As I began to open up more to her she cried with me. I told her of the many times that I had done as she was tonight -- sitting at a patient's beside to give them comfort and help them express their emotional feelings. This nurse could have just as well gotten up and fetched me a sleeping pill to ease my nerves but she did as I hope all nurses do -- she gave me her valuable time. She showed me compassion. She demonstrated that she had to reassign her priorities and that giving report was no longer her first mission. I could have been on another unit and cared for by another nurse who would have done the same as Myck did for me that night, but fate placed me in her hands and she will always be a special person to me as a result. My post-op recovery went pretty much as planned and when I reached 8 weeks postop I was permitted to go to be fitted for my breast prosthesis. I took my mother with me for this important occasion. The store that I went to had a huge walk in closet with oversized shoeboxes in it that went from floor to ceiling. In each box was a prosthesis. I quickly realized just how many women must have come before me and how many more they were expecting after I was fitted that day. It was a sobering thought. I was fitted by a certified fitter. Though I insisted upon trying on several different sizes the fitter who had told me that I probably would look best "in a number 9" was absolutely right. Begin fitted sort of reminded me of choosing a puppy. After all, I planned to have this prosthesis a long time, she would become my bosom buddy, and I needed to feel perfectly comfortable with her. My mother looked at me while I was being fitted as if she were watching me try on wedding gowns. She agreed that the fit had "to be perfect". Once my prosthesis was in place and my knit shirt on I could sense that I was standing taller once again. My confidence had been restored. My mother's face showed a sign of relief. My Memorex version of my breast I had lost to cancer was in place. I chose to give my prosthesis a name. Her name is "Betty Boob." In 1994 my mammogram displayed troublesome news once again and Betty got a roommate.(I had to have a second mastectomy.) As a result of these experiences with breast cancer I chose to write a book called the Breast Cancer Survivors' Club -- A Nurse's Experience. I also chose to make a career change and in 1997 became the Education and Outreach Director of the Johns Hopkins Breast Center, where I have a wonderful team of survivor volunteers who I "match" to newly diagnosed patients based on their age, marital status, and anticipated breast cancer treatment. The newly diagnosed patient has an experienced "club member" to help support her through each and every step of her treatment, for as long as she desires. I also travel around the country and speak to various groups about my experiences, always trying to focus on the value of keeping your sense of humor. This is of particular importance to me to emphasize when I am talking with cancer patients and their families. I have spoken with nurses, doctors, researchers, volunteers, patients, and organizations involved with breast cancer programs. Getting breast cancer has been one of the worst things that has ever happened to me; it also is one of the best things that has ever happened to me and to my family. My marriage was always strong but now is even stronger. My mother and I have co-founded a national nonprofit organization targeted to provide support for mothers of daughters diagnosed with breast cancer (MSDBC-Mothers Supporting Daughters with Breast Cancer). I also value each day and no longer take anything for granted. People have asked me, "Do you still have cleavage?" -- I say, "Well, my surgeon removed my cleav and just left me with my age, with intent that I grow old." Having experienced breast cancer now from three uniquely different vantage points, I feel comfortable talking with patients about their own emotional reactions as well as that of their families' and friends'. I strive each day at the Johns Hopkins Breast Center to constantly develop improved methods to better meet our breast cancer patient's emotional, physical, and spiritual needs. I share with these patients my personal experiences and try to instill not just a little laughter to help reduce their stress, but a strong sense of hope that they, too, will become long term members of the Breast Cancer Survivors' Club. By the way, Miss Bertha achieved her personal goal. She outlived her doctor by 3 years. (She lived for 21 more years after her diagnosis of stage IV cancer was made.) So don't ever doubt the power of optimism and humor...and love of people around you who care about you. It CAN see you through. Lillie with mother Charmayne Breast Cancer Survivors' Club Breast Cancer Survivors' Club - New Revised Edition Lillie Shockney Lillie Shockney RN, BS, MAS, Education and Outreach Director at Johns Hopkins Breast Center, is the author of Breast Cancer Survivors' Club and co-founder of the national nonprofit organization Mothers Supporting Daughters with Breast Cancer.