(Another Life Saved)[1]

by Phylicia Fauntleroy Bowman This e-mail address is being protected from spambots. You need JavaScript enabled to view it

“We don't see things as they are, we see them as we are.”

Anais Nin

Background Information

I am a very proud, Black woman, who is surviving breast cancer that was diagnosed five years ago, in January 1997, when I was 49 years old. I feel blessed that it occurred when a new generation of drugs such as HERCEPTIN could arrest it. [2] HERCEPTIN targets and kills a protein that causes the cancer cells to grow rapidly. Unlike traditional chemotherapy, HERCEPTIN does not kill normal cells; hence there are no adverse side effects such as hair loss. HERCEPTIN also does not suppress the immune system, so I can live a full and normal life. A person is a candidate for HERCEPTIN if the results of the pathology tests for Her2Neu are 2+ or 3+. Mine was 3+.

I am eternally indebted to Dr. Winston Anderson, a Black cell biologist, and his first Ph.D. student, Dr. Dennis Slamon. Dr. Slamon is the founder of HERCEPTIN. He first began his research that led to the discovery of HERCEPTIN in Dr. Anderson's lab at the University of Chicago.

Although brutally graphic in a few places, this is a positive story, with a happy ending, at least so far. It is a story of the triumph over adversity. I personify a new breed of breast cancer survivors; those who are managing it as a chronic rather than a life ending disease. In so doing, new issues are arising. For example, I have been asked to go to Nigeria on a USAID-sponsored project. I now must “decide” which of the recommended shots I should take. This question is complex and difficult to answer because the infectious disease experts are not normally familiar with the cancer treatments and their impacts on my immune system and the oncologists are not familiar with the possible infectious diseases. How then do I balance the risks of taking shots for diseases such as Yellow Fever, which is a live virus vaccine, versus not taking the shot and perhaps getting bitten by the wrong mosquito? To get the answer, wise doctors at the Washington Hospital Center called Genentech, the manufacturer of HERCEPTIN. They were told HERCEPTIN does not suppress the immune system so that should not be a barrier to getting the shot.

But, I am getting ahead of myself. Before going any further with the issues that I am currently addressing, let me first share more background information on me.

I live in Washington, D.C., where I grew up. I have no children, having married late, at age 46, in 1993. I believe my husband, John, is heaven-sent from my “Father s ” above, and I am deeply in love with him. I normally have a Type A personality, which has served me well in obtaining my Ph.D. in economics and in progressing in my career.

I have been fortunate to be born into and reared by a well-educated family. My father, John Douglass Fauntleroy, was a Judge, who died of pancreatic cancer in 1989. His death remains one of the most traumatic events in my life. My mother, Phyllis Gibbs Fauntleroy, also has an advanced degree, and is alive and well. She lives only a few miles from my house. She comes from a family with five generations of college graduates and three generations of physicians. My grandfather was a family practitioner, and my uncle and one of his daughters are surgeons. None of this lineage predisposed me to the disease nor did such access to medical expertise keep me from getting breast cancer, but, as explained below, it has contributed positively to my survival.

For example, I have always had the best medical care. Because I had fibrocystic disease and dense breast tissue, my gynecologists, first Dr. Harry Martin and after his retirement Dr. David Downing, and my surgeon, Dr. LaSalle Leffall , [3] monitored me closely for breast cancer (“bc”) for 25 years. Each checked my breasts every three or four months. Upon Dr. Leffall's advice, I periodically took vitamin A and E, and I minimized my caffeine intake. (I rarely drank coffee.) In the early 1980s, I had a baseline xero -radiography, an early form of mammograms. In the late 1980s, clustered calcifications showed up on my right breast. A biopsy showed it was atypical ductal hyperplasia, a pre-cancerous condition. Dr. Leffall removed the tissue, and for a while I had mammograms every six months. In 1993, another biopsy of tissue from the right breast showed the same pre-cancerous condition. It too was removed and the margins were widened. I also obtained a second opinion on whether or not to have prophylactic mastectomies of both breasts and/or whether or not to take Tamoxifen, a drug deemed to be effective in preventing breast cancer. We decided to continue to monitor the situation closely, which in fact we did. [4] In addition to the frequent medical visits, I began getting both mammograms and sonograms. Meanwhile, Dr. Leffall continued to aspirate numerous cysts, during virtually every visit. My last mammogram, before the breast cancer diagnosis, was in February 1996.

Discovery and Diagnosis

I discovered a lump in my left breast a few days after Christmas in December 1996. The lump was located in the upper inner quadrant, but it was also near where I had a cyst, so I was not initially alarmed. In addition, my gynecologist had checked my breasts only three weeks before, and my surgeon had checked my breasts about seven weeks before. They had found some thickening, but that was not a cause for alarm, given my history. However, a week later I found a second lump. Both lumps were a little harder than the cysts. I immediately showed up at Dr. Leffall's office at 5 a.m. when it opens, even though I did not have an appointment. He tried to aspirate the lumps, but this time no fluid came out. In the event there were other lumps lurking underneath, on that same day and without an appointment, I got another mammogram and sonogram and took them to him to review before the biopsy. He performed a biopsy the next day, which confirmed the malignancy. A week later, on January 22, 1997, he performed a modified radical mastectomy of my left breast, and I began what proved to be an eight-month leave of absence from my job. [5] Lymph nodes were also removed, [6] and 18 out of 23 were malignant.

The next step was to undergo a series of tests to determine if the cancer had metastasized; i.e., spread to other organs. My husband and my best friends, Jerome and Cynthia, accompanied me to the tests. I had a paralyzing fear as I felt like I was being led to the guillotine. The good news was the bone scans and CT scans showed no metastasis, and I think my blood tests indicated that the tumor markers were in the normal range.

Breast Cancer Treatments

I chose my father's oncologist, Dr. John McKnight, at the Washington Hospital Center, for follow-up treatment. Dr. Leffall had recommended him highly, not only for his medical knowledge and expertise, but also because “he cared deeply for his patients.” Upon the advice of a colleague, I also sent my pathology reports to several other prominent oncologists in the area. One called me back. He recommended the same approach Dr. McKnight was following.

On the same day as my first visit, Dr. McKnight advised me to immediately begin four cycles of Adriamyacin and Cytoxan (often called A/C) chemotherapy. Each treatment was given three weeks apart. The “chemo” is given through a medi -port, which is a device that is usually placed just under the skin between the neck and the shoulder. The device is inserted into a vein so the drugs can be “infused” or administered. Without the “port,” the nurse would have to stick a thick needle into my small,, rolling vein, and that would be more painful. The medi -port also makes it easier and less painful to draw blood, which is necessary for obtaining complete blood counts ( CBCs ) and other blood tests before each treatment and at least once each week between treatments.

Dr. McKnight also arranged for me to talk with a nurse in the hospital regarding any clinical trials I might want to participate in, but I was in no mental condition to consider such choices at that time. Also, on that same day I met with Dr. Vera Malkovska , Director of the Stem Cell Transplant program at the Washington Hospital Center, and she told me I was an ideal candidate for a stem cell transplant [7] after the A/C. I did not know whether that was good or bad, but she surely made me feel that it was positive news. However, my health insurance carrier would not pay for the stem cell transplant at the Washington Hospital Center because its program was not affiliated with the National Cancer Institute. Dr. Malkovska recommended that I go to Johns Hopkins instead. I underwent a stem cell transplant, also called high dose chemo, at Johns Hopkins in May through July 1997, and it was followed by radiation treatments at the Washington Hospital Center in September 1997.

The medi -port had to be installed surgically. For at least the first six weeks, I had considerable pain where it was located. I have now had three more medi -ports since the original one. The current one is in my arm, and was placed there after the intravenous radiologist performed an angioplasty to open up a vein. I had had the previous one removed after developing a blood clot.

I also went to Dr. Leffall's office every few days for at least six weeks to have fluid drained from the area under my arm where lymph nodes had been removed. There are advantages and disadvantages in having the lymph nodes removed. One advantage is the fact I no longer need to use deodorant under that arm. One of the key disadvantages is considerable stiffness, numbness, and restricted mobility. Arm exercises and physical therapy help considerably.

Dr. McKnight told me most of his patients did not get nauseous during “chemo” treatments, thanks to very effective anti-nausea drugs such as Zofran , which was given intravenously with the chemo. I handled the chemo well, and without any nausea. To prevent even the onset of nausea, Dr. McKnight prescribed Zofran pills on his visit to my house a day after my first treatment. However, they proved to be a disaster. As soon as I took one pill, I felt like all of the fluid in my body was being sucked out. The next day I took another pill, just before going to dinner for Valentine's Day. That was an even greater disaster. Again, I immediately felt sick, so we had to leave the restaurant and return home. I never took another Zofran pill.

The major side effects I did encounter from the “chemo” were excessive fatigue; a sore in my mouth, which was effectively t reated with a special mouthwash Dr. McKnight prescribed; changed taste buds; and a heightened distaste for certain smells. As an example, I could not open the microwave without holding my nose.

I got my “chemo” treatments in Dr. McKnight's office rather than in a more impersonal hospital infusion center, and that proved to be a very uplifting environment. The nurse, Lisa Ford, was especially helpful. Her calm demeanor and her efficient handling of a number of patients put me at ease on the first day of my treatment. I had arrived, scared and frightened and holding my Bible close to me so I could meditate in prayer. I expected to see other patients doing the same thing, and everyone being somber and sad. Instead, there was lots of “life” in the room, and the mood was very upbeat. There was TV to watch. More importantly, there was lively discussion among the patients. We talked a lot about food that we were looking forward to eating after the treatments were over, and we joked and laughed. Some patients shared recipes. I left in far better spirits than when I had arrived.

The stem cell transplant was a much harder experience for me. In the event I did not survive the ordeal, before entering the hospital, I treated myself to a gas fireplace in my living room, even though it was summer.

I also had to have my medi -port removed and a new, external one, called a Hickman catheter, installed. This type of catheter has two large external flexible tubes and was necessary for bone marrow transplants because it allows large volumes of medications to be given at frequent intervals by vein. To prevent infections, the dressing for the catheter had to be changed twice a day. My husband changed the dressings after I left the hospital.

I was in the hospital for three weeks, and I did not eat for virtually the entire time, plus the following two weeks after I had left. I did not lose weight during my hospital stay because they were giving me nutrients intravenously, but I lost ten pounds in the first two weeks after I left the hospital because of persistent nausea. I actually had to learn to want to eat again, something I never imagined would have happened to me, an avid food lover.

The fatigue during the stem cell transplant was like nothing I had ever experienced. At one point, I was too tired to open my eyes, even though I was awake. I remember John and Jerome visiting me, thinking I was talking out of my head because I my eyes were closed. My greatest personal accomplishment during my hospital stay was being able to take a shower, without assistance, every day. I still remember waking up at 4 a.m., by the cheerful practical nurse, and taking hours to plan just how I was going to meet that goal.

I did not experience any pain during the stem cell transplant. When the high dose “chemo” created sores in my mouth and throughout my esophagus, a pain patch was placed on my back so I was never uncomfortable. Since I was not eating, there was no problem with digesting food.

Johns Hopkins redefined the concept of “customer service” for me. For example, as part of the stem cell transplant program, all bodily excretions had to be measured. This meant every time I threw up, a nurse had to come and measure it. Having had a very positive experience with “liquid Zofran ” I pressured the pharmacist to prescribe more Zofran after the high dose. He had told me that it would not work, and he was right. Likewise, all bowel movements and urination had to be measured. During the week I got the high dose chemo, I had to urinate every hour, around the clock, to ensure the chemo did not settle in my bladder. The high dose chemo also made me very sensitive to smells and odors so it was important that this distasteful task was performed quickly.

In this context, the patient service at the hospital, was extraordinary, as staff came quickly to my aid each and every time that I rang the buzzer, both night and day. And they not only came quickly; they also came enthusiastically and cheerfully. You would have thought they were coming to get a wonderful gift or present. If the nurse assigned to me was unavailable, someone else responded immediately. Even the woman who distributed and picked up the food trays went out of her way to be helpful, by finding me an apple long after mealtime, as if it were a very normal and routine part of her job. The practical nurse, whose day started at 4 a.m. , managed to be cheerful every morning. The doctors also made rounds every morning, including a world-renown breast cancer specialist and a pharmacist who answered questions regarding the drugs and side effects. At my request, I was also able to continue my physical therapy.

Although the stem cell transplant can be fatal, at no time did I feel my life was in jeopardy. Dr. McKnight anticipated the rigor of the treatment and made sure I was as strong as possible before the treatment. He urged me not to go to work, so I would not catch the flu and other illnesses that I would be susceptible to because my white blood count was low from the chemo treatments. He also made sure I got neupogen shots for seven days after each treatment, so my white blood count never got too low. He also ordered a blood transfusion after the four cycles of A/C, to improve my energy level.

Moreover, stem cell transplants are now given earlier in diagnosis, when women are likely to be stronger and able to withstand the high dose and its side effects. In addition, the hospital staff had substantial experience with the treatment process so they were well prepared for problems that may arise. I did have one anxious night when my temperature spiked. I had been told that that might happen. Nonetheless, I made it my mission to work on getting the temperature down by morning by putting cool wash cloths on my forehead every half hour or so. This was not hard to do since I was awake so I could go to the bathroom every hour. By morning my efforts had paid off, because the temperature was normal and I was proud of my achievement.

I have never seen a culture of such perfect teamwork as at Johns Hopkins. I would find it hard to believe that the incentive for such stellar performance was pecuniary since I can't imagine any amount of money that would make me want to fill those jobs. After that experience, I must admit when I returned to work I found squabbles among employees who were likely to be much better paid and working under far nicer conditions to be petty. As a manager, I would love to know how Hopkins was and probably still is able to incent employees to maintain such standards.

Nonetheless, I was eager to leave the hospital, and, in fact, I did so at least one day before the doctors thought I was ready to go. I regretted my decision to leave almost immediately. (Patience is not one of my virtues.) For, the day I left the hospital was one of the hottest days in the season; in fact, the temperature was nearly 100, or so it seemed. Upon arriving at home, we realized the air conditioning was not working. We called our HVAC contractor, which had installed the gas fireplace and had not been paid. The contractor agreed to come by immediately and did so. Fortunately, the problem was minor so it was fixed, and we gave the technician a check for the gas fireplace, which was not much good to me then. But, the moral of this story is, as the saying goes, “GOD does not like ugly.” No sooner was the air conditioner repaired we experienced a power outage, which lasted until the next morning. Needless to say, I could have had plenty of air conditioning had I stayed in the hospital one more day.

I was still so weak after leaving the hospital that I would be exhausted just going from my kitchen to the car in the adjacent carport. The heat was unbearable. Plus, the doctors told me it would take six to eight weeks for me to feel normal again. I was encouraged to get away for a while. My surgeon uncle, Dr. Jonathan C. Gibbs, Jr. whom I call Uncle Buddy, and his wife, Aunt Verna, live in Jersey City , New Jersey , and they offered my husband and me their summer home in Sag Harbor , Long Island , where I could recuperate. It was a welcomed and perfect retreat.

Many breast cancer patients with whom I have talked complain of bone or back pain. That has also been my experience. While traveling by car “on vacation” after the stem cell treatment, I developed considerable back pain. Of course, my first thought was the cancer. It got so bad, that when we returned to D.C., we drove directly to the hospital. Dr. McKnight ordered an X-ray. The pain appeared to be caused by arthritis rather than the cancer. The radiation oncologist said she had never seen anyone my age with so much arthritis. Fortunately, the pain disappeared soon thereafter.

The radiation treatments, [8] to the left side of my neck down to my chest, lasted about five weeks, and were a piece of cake compared to the “chemo” and stem cell transplant. However, I contracted radiation pneumonitis at the end of the treatments, as evidenced by a persistent dry cough, and it lasted several weeks. Of course, my first thought was the cancer, so I was relieved when a chest X-ray confirmed the diagnosis. I did not focus on the fact pneumonitis and pneumonia are closely related and thus, it was still a serious condition. At that point, I was just elated to be working full-time. In hindsight, I should have followed doctors' orders and continued to work part-time a while longer.

I returned to work in September 1997. In December 1997, a mammogram of my right breast showed some possible calcifications. The radiologist recommended a retake in six months. Dr. McKnight recommended I consider prophylactic removal of my right breast and reconstruction. Dr. Leffall also concurred. Dr. McKnight referred me to a plastic surgeon, who wisely asked me, “Why are you waiting?” He was right. The good news was the prophylactic simple mastectomy validated the need for the surgery as malignant cells were found in my right breast. Fortunately they were microscopic and thus found very early. The cancer was the same type as what had been found in my left breast, but the malignant cells were not found where I had previously had biopsies or where a metastasis was likely to have occurred, so it may have been the very early stage in the development of a new cancer.

Coincidentally, as I prepared for the surgery, my CA 15-3 tumor marker was found to be elevated. I had had a CT scan in December 1997, which did not show any problem, so I immediately had a bone scan and MRI. The bad news was the MRI showed multiple lesions to my spine. However, Dr. McKnight remained upbeat, even pointing out a very attractive patient in his office, who had had bone metastasis a year before and whose cancer had responded quite well to Taxotere. He immediately placed me on the same drug, which was effective in bringing my tumor markers back to within the normal range. I continued to work full-time, while getting Taxotere every three weeks. But, by August 1998, I was starting to have nerve damage from the Taxotere, which was manifested by tingling in my fingertips and toes. Fortunately, on Friday, September 25, 1998 , the FDA approved HERCEPTIN for use outside of clinical trials. On October 12, 1998 , one of Dr. McKnight's other patients and I began weekly HERCEPTIN treatments.

I was one of the first to get HERCEPTIN at the Washington Hospital Center . I had done my homework and knew I was a candidate for the drug, thanks to Uncle Buddy. I had been sending him my pathologist reports and results of scans. He had recommended that I try to get HERCEPTIN, which was only available through clinical trials, soon after the metastasis was discovered. However, at that time, I was not eligible to enter the lottery for the drug because I had not failed two or three other protocols. Instead, I closely followed news reports that the FDA might soon approve the use of HERCEPTIN outside of the trials. I had also called Georgetown University , which was participating in the clinical trials, and had been told that Genentech, the manufacturer of the drug, had promised there would be sufficient quantities available for all who needed it, upon FDA approval. On the Monday after the FDA approval, I called Dr. McKnight's office to find out when I could get the drug. I was also fortunate to have a health insurance carrier that would pay for it so soon after the FDA approval.

Treatment Results

To date, my tumor markers have remained in the normal range, and I have been able to work full-time and lead a full and normal life. A bone scan, MRI and CT scan in January 1999 showed no further spread of the cancer. The same scans in January 2000 and January 2001 showed no evidence of active cancer, which I define as being cancer-free. On October 23, 2001 , after consulting with my cardiologist and getting a muga scan which showed HERCEPTIN had not damaged my heart, I began getting a triple dose of HERCEPTIN every three weeks, rather than a single dose every week. In January 2002, I had an MRI, CT scan, and for the first time, a PET scan, and all indicated that I continue to be cancer-free.

I have not had any adverse side effects from HERCEPTIN, although I have been plagued with blood clots, quite possibly from the need to infuse HERCEPTIN through the medi -port. [9] I had had the original medi -port in my upper right chest removed and a new one placed in my arm. To prevent the development of new clots, I take daily doses of Coumadin. I also periodically get procrit shots when my red blood count and hemoglobin level are low.

My dentist, Dr. Mohammed Moaddab , has monitored my oral health closely. He is particularly pleased with how well my teeth and gums have withstood the many treatments I have been undergoing. There has not been any evidence of bone loss. My crowns have also held up well. Dr. Moaddab's support has not only been as my dentist. Upon returning from a trip to his native country, Iran , he gave me a gold religious necklace to signify his prayers for my recovery. Although I am a Christian rather than Muslim, I believe there is essentially one God whom we call different names, and thus I wore the necklace during many of my treatments. When I returned to work, I carried it in my purse, since I do not believe it is appropriate to wear religious symbols in the workplace.

Other Medications

I take several other medications. The cancer in my spine was more osteoblastic (adds to the bone) than osteolytic (eats the bone). The former is less painful than the latter, which means I have not experienced a lot of pain. Nonetheless, until recently, I was getting Aredia treatments every four weeks to strengthen my bones. Now I am getting Zometa , which is just as effective as Aredia , and it takes only 15 minutes to infuse rather than the 2 hours for Aredia . I also take two immune boosting pills a day, called MGN-3, which are prescribed by my naturopathic physician, Dr. Cannon. I take the pills at night, based on my theory that my immune system is most vulnerable when I am not active, which is when I am asleep. [10] Dr. Cannon works in conjunction with my oncologist, and I provide him with the results of my tests so he can follow my medical status as well. Finally, I take daily doses of Synthroid for hypothyroidism. [11]

Lymphedema

I developed swelling in my left arm in March 2000. It is not very noticeable because my arms are normally so thin that I never wear a watch or bracelet so as not to call attention to them. Now the arm simply looks normal.

Originally, I did not know the swelling was lymphedema that is caused by problems in the drainage of lymphatic system. I thought it was related to the blood clots that I had just discovered. Although no doctor has supported this theory, I think the swelling is related to underwire bras, which I started wearing just weeks before I noticed the swelling. I have since either gone without a bra or worn a softer bra, and the swelling has improved. I have also undergone special massages and exercises at a lymphedema clinic, which have been extremely effective. I also wear a custom-made sleeve whenever the swelling appears or whenever I wear a bra. Finally, during the Spring of 2001, I took a yoga class for breast cancer survivors, and some of the arm exercises that I learned in that class have been very helpful.

Role of Nutrition

Nutrition is often viewed as an important deterrent to all kinds of cancer, but I believe I had a relatively healthy diet before the cancer diagnosis. I have never been a coffee drinker and I ceased drinking caffeine products years before my diagnosis. I had also limited my salt intake. Before the cancer diagnosis, I often drank a glass of wine with dinner. I stopped drinking alcohol during my treatments in 1997 and then for good in March 1998, when the bone metastasis was discovered. I continue to eat very little red meat and mostly poultry and seafood, and fruits and vegetables every day. I rarely eat fast-food or fried food. I do have a sweet tooth, but have tried to reduce my sugar intake since my naturopathic doctor told me cancer thrives on sugar. My blood pressure tends to be low rather than high.

Once I was diagnosed with “ bc ,” I had a number of friends who gave me helpful nutrition tips. For example, Linda McMillan, the sister of one of my colleagues and friends, is a vegetarian. She took me to Fresh Fields, and showed me how to shop for the best fruits and vegetables. Instead of picking the vegetables on display, she goes to one of the workers and asks for the vegetables, which have not yet been brought out. She got some carrots that way and they were the sweetest carrots I have ever tasted. Another friend bought me a new juicer, and made carrot juice for me. I, however, could not replicate his delicious drink.

Feelings About Losing My Breasts

I fell in love with my breasts in the early 1980s, after seeing the X-ray from the xeroradiography . I was so impressed with the size and shape, I actually considered posting the X-rays on the wall of my house.

I am probably the only person who was impressed with my breasts. More than one doctor, male and female, commented on the small size of my breasts, especially the right one, which was further reduced by several biopsies. In fact, my breasts, by most people's standards, were relatively small (bra size 34B), but I thought they were well proportioned to the rest of my rather small, sizes 6-8 frame. Nonetheless, I always said breasts were not “vital” organs, and if I were diagnosed with breast cancer, I would gladly give them up, as I much preferred to be alive, with no breasts or reconstructed breasts, than six feet under with my “good looking” breasts.

That is exactly how I felt after learning of the diagnosis. I asked my surgeon to remove both breasts, but he correctly refused to do so, since, at that point, we lacked critical information. In hindsight, I think it was far better to wait a year to have the second mastectomy and reconstruction, for right after the diagnosis, I was already having “information overload” as I had to deal with the new medi-port, the initiation of chemo, and the planned stem cell transplant. At this point, what I miss the most is not the breasts as much as the erotic feelings of my nipples.

I urge all women who have had mastectomies to undergo physical therapy soon thereafter. The massage techniques, through the expert hands of my physical therapist, Diane Marr, at the National Rehabilitation Hospital , were enormously therapeutic, both physically and especially psychologically. I could not have imagined how valuable it was to have her touch the scarred area with such gentleness and without disgust or reproach. She made me feel human again; facilitating my emotional acceptance of the scar. She also helped restore much of the mobility in my arm.

Feelings About the Breast Reconstruction

One of the key reasons women dread breast cancer is the disfigurement that is associated with mastectomies, so breast reconstruction is a welcomed option for many “bc” patients.

I have two types of breast reconstruction, a TRAM flap for the left breast and a saline breast implant for the right breast, because I did not have enough abdominal fat for two TRAM flaps. I had seen the results of both procedures prior to the surgery. The plastic surgeon I chose for the breast reconstruction had performed the TRAM flap surgery on one of my co-workers in 1993. At my request, she had shown me her breast at that time, and I was favorably impressed with how real it looked. I had seen the breast implants on a saleswoman in Sag Harbor in a lingerie store. When she came up to me and asked if she could help me, I responded by saying I could not wear such pretty lingerie because I had had a mastectomy. She immediately informed me she had had both breasts removed for prophylactic reasons, and she offered to show them to me, which she did. When it was my turn for the surgery in 1998, the same plastic surgeon gave me a list of several of his patients whom I could contact, and one became a close friend until she died about a year later.

I am glad that I decided to have the breast reconstruction, but not just for the expected aesthetic and cosmetic reasons. I have always had poor posture, and I had experienced intermittent back pain from arthritis for much of my adult life. The first mastectomy only exacerbated the problem because I felt as if my torso was twisted so I could not stand up straight. I also had great difficulty imagining myself as a “sexual being,” which made orgasms harder to come by.

The breast reconstruction helped restore my self-image. I also realized that I needed the weight of the breast in the front, to balance my back. I even think my posture improved.

For the first two years after the breast reconstruction, I rarely wore a bra, which was possible because of the firmness of the new breasts. Initially after the surgery, I began wearing my existing, underwire bras, but each time I did so, my back started hurting. In 2000, I decided to go to Sylene's and have a professional fitter advise me on what bras to wear. She informed me that my existing bras were too small, and I should wear a size larger, 34C (which is also the size my plastic surgeon promised me I would have). When I changed to the larger bras, I no longer had any more back pain.

Although I am pleased with my plastic surgeon's work and I am certain he did a great job, I still think and feel I am a freak. Part of the problem lies in the fact my new breasts do not match because I have two different types. I have not developed any keloids, but the left breast is stitched in a circle and the right breast, with the implant, has a line going horizontally across the middle of the breast. The left breast is also somewhat larger than the right breast, which is noticeable, at least to me, even with clothes on. I vacillate between whether I prefer the breast implant or the TRAM flap. The TRAM flap is realistic looking, but the surgery is extensive and there is considerable abdominal numbness, not to mention an operation scar clear across my abdomen. The implant is hard and not as realistic looking, but there is less extensive surgery. Both are also rather flat, particularly more noticeable when I don't wear a bra.

Ironically, I now get compliments on the new breasts when I never got compliments on the real breasts, which I loved. For example, my surgeon recently conducted his annual exam, and he repeatedly said how great everything looked. I think he even used the word beautiful. I'm sure he was admiring the surgery and how well everything had healed. In contrast, many times when he checked my breast before the diagnosis, he commented to the medical students in attendance that one had to be careful in aspirating cysts in my breasts so that there would not be any injury to the chest wall. The clear but unstated implication was that this was a problem because my breasts were so small.

Others have also commended my new breasts. The prosthesis fitter at Nordstroms, who has obviously seen many women with breast reconstruction, said my breasts were some of the best she had seen. The technician in my cardiologist's office was also very complimentary. To make me feel better, my radiation oncologist, who is a woman, told me I should not think I'm that different from many other women my age, since, after a woman has one or more children, the breasts sag and flatten anyway. Since I have never had children, that comparison was not obvious to me.

So why can't I think and feel that way. I guess that is something I will have to work on, falling in love with my body again. I already have asked my plastic surgeon to add a little saline fluid, through surgery, to the breast implant and perhaps change the shape of the implant. The fact I can now think or pursue such “tweaking” is a positive sign of how well I am doing. After all, I would not be thinking about doing this if I didn't also believe I now have a future. [12] However, he has some hesitation because of the risk of infection, and the fact I am on HERCEPTIN and Coumadin . He has agreed to consult further with Dr. McKnight on the matter.

Feelings about My Appearance

I have never spent much time on my “looks.” That did not change during the breast cancer treatments, when I lost my hair. I have seen women who I thought looked great, even though they were bald, either because of their smooth skin and/or the shape of their head. However, I was definitely not in that category. I looked like “ET.” Thus, I wore a wig with long bangs to hide my high forehead and my loss of eyebrows. Thanks to my friend, Evelyn , I contacted and received some support from Rise Sister Rise, the breast cancer support group for Black women, and the American Cancer Society (ACS) through Reach for Recovery, but I never attended any of the ACS' “Look Good, Feel Good” classes. On the positive side, I tried to use the “bald” period to get rid of my dandruff.

From time to time, such as special occasions like a dance, I have unsuccessfully tried to achieve “my look” on my wedding day, which was truly the one and only day in my life when I thought I was beautiful. To be honest, age probably has as much to do with the failure as “bc.”

Hair is an issue for many Black women, and I am no exception. Since “bc,” my hair is thinner, straighter (but not straight) and softer in texture. On the plus side, this means I no longer need to get relaxers, which is great because I am now afraid to put chemicals in my hair. Moreover, during the summer I have “wash and wear” hair. I can wash my hair in the shower and brush it back in a ponytail. It dries while I am on my way to work. I cannot, however, do that in the winter because it is too cold.

As with most things, however, there is a “con” side, some of which I could have never imagined. As I have sought to recreate “my bridal look” for special occasions, more than one hairdresser has informed me that they cannot create the same hairstyle because my hair is now straighter and lacks body. Who would have ever thought there would be any disadvantage to having straighter hair.

I did not have any gray hair before “bc,” but, given my age, I thought the new hair would have a lot of gray. Surprisingly, it is darker than before, which is not necessarily an advantage because it makes my light complexion look even more pale than it already is. [13] Last summer, I asked my hairdresser to add highlights, but I think the chemicals were too strong because I started to get headaches immediately thereafter.

“Chemo” also thinned my body hair, which is great for my previously hairy legs and arms that I also inherited from my Dad. But it also means I have lost my signature thick eyelashes, one of the few features on which I was often complimented. Now my eyes look bald to me. I made an appointment with the make-up artist for my wedding and she gave me a brown eyeliner, which I now use regularly to give more definition to my eyes.

Finally, I am about 20 pounds heavier than before “bc.” Many thought I was too thin beforehand, so the weight gain is viewed as a plus. I am comfortable with the added weight since it did not require a new set of clothes.

The Economics of Cancer

The economist in me says I should also discuss economic and financial issues associated with breast cancer, or any other cancer or chronic disease. Several issues come to mind. Based on my experience, I believe hospital billing is deliberately designed to be confusing; perhaps in the hopes patients will not take the time to analyze the charges. In my case, the billing system has challenged every corner of my educated mind. I have developed a tracking system for all bills and insurance forms entitled “Explanation of Benefits.” Nonetheless, it is impossible to compare the two because they do not use the same names or codes. In addition, I get several different types of bills from the hospital and each one uses a different ID number so it is difficult to make comparisons. When I took these forms to the hospital's billing office to get some assistance, the customer service representative flatly told me he too did not understand the system of billing. Moreover, the hospital bills are usually not itemized; that occurs only after I take the time to call. Given the fact I get about 300 bills and “Explanations of Benefits” a year, it is impossible to call regarding each one. At one point the hospital resorted to the use of an aggressive collection agency. Time and again, their information was incorrect, and I had to spend considerable time trying to get it straightened out. Needless to say, I often do not have the energy to fight the billing system when I am trying to spend most of my energy just staying alive.

My tracking system has been invaluable in a number of instances. For example, I received a bill from one hospital for over $5,000 for services rendered on one day. It was not until after I asked what the charges were for that they discovered the bill was sent in error. As another example, one year, on the day before Christmas, I received a hospital bill for $10,000 for several HERCEPTIN treatments given in the hospital's infusion center. That certainly caused me some anxiety. I checked the “Explanation of Benefits” form and learned the insurance company had not paid because it needed an itemized bill. I then called the hospital and informed them they needed to send the insurance company the itemized bill. It took several months for the matter to be resolved.

These issues are continuing to date. I am besieged with medical bills; in fact, I carry at least one bill or insurance claim in my briefcase virtually every day. Some days I just don't feel like dealing with it and I don't. I can't remember when I was not worrying about at least one bill or payment. For example, I just got a lengthy bill from the hospital, which indicates that they have filed several claims with my insurance company and have not received a response. They now want me to contact my insurance company to find out the status. The problem is I don't have any claim numbers for these “claims,” hence it may be difficult for me to conduct the inquiry. Apparently, the hospital is now shifting this responsibility to the patient.

I have been fortunate to have both a primary insurance carrier, in my name, and a secondary insurance carrier in my husband's name. My husband's insurance plan includes a prescription plan that has enabled me to get most drugs for about $5.00. Since I work full-time, “ copays ” and deductibles have been manageable so far, but they are increasing.

Since I have gotten treatments at both hospital infusion centers and in my oncologist's office, I am able to compare the charges. It appears the insurance company pays the hospitals more than it pays the doctor, for the same service, even though the hospital probably has lower costs and higher profit margins because it can purchase the drugs at a volume discount. I much prefer to get my treatments in my doctor's office, but the current system, which is more costly ultimately to the patients, favors the hospital. I think neither my doctor nor the hospital is satisfied with the reimbursement rates, which may or may not be constrained by premiums. But neither increased premiums or increased drug prices is a long-run solution for me and others in my age group, as we get closer to retirement.

Access to the best treatments and drugs is also an economics issue. I worry there are still many women who are candidates for HERCEPTIN, but are not aware of it or can't afford it because they lack health insurance. My concern is not based solely on theory. I have a friend whose life has been saved by HERCEPTIN, yet she was unaware of it until she came to Dr. McKnight. Her HMO had not even tested her for it. Her oncologist was primarily interested in making her comfortable until she died. In another case, about a year ago, there was a special news report on a “New Drug.” I was online with a number of women with metastatic breast cancer who were not candidates for HERCEPTIN and so they were eager to learn what the new drug was. They were most disappointed when they found that the news report was on HERCEPTIN, and they complained that it was not new at all. I understood their disappointment, but I felt compelled to remind them that the drug is new to most people, and these types of public education programs are essential to ensure all who need the drug will at least know enough to ask their doctors about it.

This problem lies with other drugs as well. I recall being appalled when I read an article in the Washington Post magazine several years ago that breast cancer patients at the city-run hospital could not get Taxol orTaxotere because the drugs were too expensive for the hospital to purchase. When later there was lively debate over whether the hospital should be closed, I admit I was probably among those who supported the closure, a rather unpopular opinion, because I felt if the hospital could not afford to give the best care such as for cancer patients, then it should not be in business. The patients would be better off being sent to other hospitals where they could get access to the drugs, and the taxpayer money would be better spent providing an insurance system that made this possible.

Although I am now able to get most of the drugs I need, I worry about whether I and others will be able to continue to afford them, especially after retirement. After all, cancer is a “high maintenance” disease, and drugs to extend our lives only exacerbate the “problem” from the insurance companies' perspective. But, from my perspective, the thought of allowing people to die when we know how to extend both the quality and quantity of their lives is morally and ethically abhorrent and yet, that is exactly what is happening even today both in the U.S. and elsewhere. For example, I have been corresponding with a breast cancer patient in Canada who needs drugs that have been proven to be effective in the U.S. , but they are not yet available to her there. My friend mentioned earlier, who now lives in California, has an HMO-doctor who refuses to give her Taxotere and HERCEPTIN together to reduce her tumor markers to the normal range even though the combination has already proven to be very effective in bringing her back from what was certainly to have been her deathbed a few months earlier.

There is at least one instance in which my health insurance company's policies adversely impact my well-being. As I mentioned earlier, I get procrit shots for anemia, which occurs when my red blood count, measured by the hematocrit and hemoglobin (H & H) levels, are below normal. Normal , for the H & H, is defined as 12 and above; for cancer patients the normal range is lower, beginning at 11. This means once my H & H gets to 11, the insurance company does not want to pay for the shots. As a consequence, I am often functioning at a borderline level and thus am tired, especially after a long day at work. I also firmly believe the normal range needs to be reevaluated for cancer patients like me. Traditionally, cancer patients in Stage IV (terminal) were considered close to the end of their lives, and thus they were not very active so relatively low counts were not viewed as being debilitating. Fortunately, today and increasing over time, more patients will be like I am, in that they will need to function at higher H & H levels.

Reasons for Breast Cancer

I have never asked the question, Why me? Nor do I think this happened to me because I had committed some sin or transgression against others. I think everyone faces hurdles and trials. Breast cancer is simply one of mine.

I did not have many risk factors. For example, I don't have a family history of breast cancer. [14] I have never taken birth control pills or hormone replacement therapy. I drank one or two glasses of wine, often with dinner, which some may consider heavy drinking. I never had children, which may be considered a risk factor. I was considered high risk because I had had two biopsies that showed evidence of pre-cancerous tissue a number of years before my actual breast cancer diagnosis.

I do have several theories as to how I contracted the disease. Excessive radiation exposure is the primary culprit. About six months before the diagnosis, while sunbathing at the beach in Cape May , New Jersey , I recall wondering whether the excessive sun might harm me, particularly as the sun's rays hit the part of my breast exposed above the bra line. Nonetheless, despite my thoughts, I was unable to move so I did not stop sunbathing, as perhaps I should have. My thoughts may have been motivated by the fact I was reading Danielle Steele's book, Lightning , about a high-powered married woman who was diagnosed with breast cancer. The novel ended without telling the reader what was the outcome of her cancer diagnosis. Was it an omen for me?

In November 1996, I had an open MRI for my lower back. I asked the technician if I should remove my jewelry and he said no. However, he may have thought I was referring to my earrings, which he could see, rather than my diamond necklace, which he could not see. It seems to me the necklace hit about the same area of my breast where the lump appeared several weeks later. I now wear the necklace only for special occasions, as if to punish myself for my own carelessness.

There is one wrinkle in at least the latter theory. I recall Dr. Leffall indicating that there was some thickening in the area where the tumors appeared during my visit to his office, several weeks before the MRI. Dr. Downing, my gynecologist, also noted some thickening a week or so after the open MRI. Neither physician was suspicious, given my history of cysts in the same area. In fact, when I got a mammogram and sonogram the day before the biopsy, the radiologist, indicated that at least one of the lumps appeared to be part of a cyst, and she would not be able to tell exactly what it was until after the biopsy results were received.

Today, I am especially fearful of the sun. When we go to the beach, I put on lots of sun tan lotion and I sit under an umbrella. I don't usually go in the water. If the sun is too bright, I won't walk the boardwalk. I don't have any scientific evidence to support my fears, but it does seem to me that my tumor markers are somewhat higher during the summer, when I am exposed to the sun, than the rest of the year.

Finally, I also think stress and more precisely my failure to handle it well is a contributing factor to the cancer. I am currently seeing a psychologist to help me find more ways to keep from letting stress affect me physically. Writing this story, which I call reverse journaling, has been especially helpful since I have now lived long enough to have many experiences, both positive and negative, upon which to draw inspiration.

Maintaining a Positive Attitude and Outlook

It's been five years since my original diagnosis, and emotionally there have been many highs and lows. After the initial diagnosis, I dreamed of my Dad, who informed me that he would help me make the transition, whenever I was ready. As much as I love him, I let him know, in no uncertain terms, that I was not ready to make that journey. I also took comfort that I had an ability to fight back, at least on an unconscious level.

Upon leaving Dr. Leffall's office and hearing the diagnosis, my husband said to me, “You will have to be strong.” As is often the case, he was right, but, at the time, I did not find comfort in those words. In the week before the mastectomy, I could only think about three things. First, I was obsessed with preparing my will and ensuring my husband and younger brother, who has Down Syndrome, would be taken care of. Second, I arranged for my best friends, who wanted to buy a house in my neighborhood, to see the house behind my house, once that it had just been put on the market. Both were convenient escapes. Dying on the operating table meant I would not have to face the rest of the “unimaginable ordeal.” My best friends subsequently reminded me that there would not be any need for me to get excited about their moving close to me if I were going to die. Fortunately, I have not died, and they did buy the house. Third, I loved my husband so much that I did not want him to be alone after I died, so I mentally picked out several friends who I thought would make a great wife for him. When I shared this with him, he politely referred to one of his nicknames for me, Ms. RE which is short for Ms. “Runs Everything,” and he told me that I should give up my “RE” proclivities since he was capable of making his own choices and decisions should the need arise. I also toyed with the idea of telling my family and close friends that, if I were to die, they should encourage my husband to date and find other female companionship as soon as possible because I did not want him to be alone and unhappy. Nor did I want them to feel it was disrespectful to me if he should decide to do so. I feel life is too short, and it should be lived fully each day. I think I shared this idea with my cousin who asked me how I would feel if the tables were turned. From that perspective, I would have been insulted, so I dropped the idea of telling my husband. Fortunately, the issue never had to arise again.

When I awoke from the first mastectomy and saw Dr. Leffall's face, I was ecstatic. I was full of love for everyone, even calling some of my adversaries at work before leaving the hospital the next day. But that glee was short-lived. Reality soon set in as I had to deal with the next stages of the disease. I had to choose an oncologist, and I worried my choice, Dr. McKnight, might not accept me as his patient as if I were applying to an exclusive school, which admitted only a few applicants. My mother had raised me to write thank you notes and that became my escape for the numerous calls, cards, and gifts, and especially prayers that I was receiving. I call this my “thank you” stage. I was grateful and saying thank you for virtually everything, even if a stranger said “Hi” to me on the street. But after a month or so, I dreaded another reason for a thank you note as I was ready for a new escape. I was thrilled to be able to turn to work again, this time from home.

Being the planner that I am, I also tried to ensure my husband would have everything he needed in the house, should I die. I increased the number of place settings of our wedding china from 13 to 16, even though I knew he was not likely to need or want so many. Similarly, I bought missing pieces of our day-to-day stainless steel flatware so there were 16 complete place settings. I replaced some broken china as well, so there were be 16 place settings of that. I also prepared a new card file of addresses so he could easily notify people of my demise. I cleaned out and threw away old papers, such as my college notes. I even threw away my teaching lecture notes.

In addition to taking inventory of my “things,” I have inventoried my life. I have half written letters to several people who have been very meaningful to my career. One died last Fall, and I had planned to send the tribute to his widow and family, but I was interrupted by the September 11 events. I have even planned my eulogy, which I want to be an opportunity for me to say thanks, rather than for others to focus on me. I think the latter is not necessary once I am deceased and can no longer hear the “praises.” Moreover, I feel I have already received their love, tributes, and appreciation in so many ways. Meanwhile, my eulogy would be my last opportunity to share my gratitude with those I respect and love.

Although to most of the world I now appear strong, self-directed, and in control, that is not always the case, and there have been many times when it would have been more accurate to describe me as a “basket case.” I am still subject to periods of fear and panic attacks. The most recent instance occurred soon after I had the PET scan. The technician was trying to be helpful, but he scared me when he said my results would be in my doctor's office that afternoon. The last time a technician said that to me was when the metastasis was found in an MRI, so I immediately thought the message was negative. In fact, my results were great, which was why he could get them to the doctor's office so quickly. As another example, I still have moments of fear when I get an unexplained pain. I respond by saying and visualizing my mantra, [15] which was given to me by my friend Joyce. I rationalize that the pain is a positive sign that HERCEPTIN is working by killing emerging cancer cells. I am also fearful of losing weight, lest that be a sign the cancer is returning. In January, I started using our stationary recumbent bike to remove the cellulite from my now 54-year old thighs. After regular use for about two weeks, I noticed a distinct improvement and some weight loss. Instead of being elated, my first thought was whether this was a sign that the cancer was coming back. I haven't been back on the bike since.

It has only been within the last year that I have had the courage to contact the online breast cancer support sites, and I am in awe of newly diagnosed patients who have the courage to use them. I do find them to be extremely informative, but it has taken me a while to be able to process all of the information somewhat objectively. Initially last year, I joined a site for women with metastatic breast cancer. The website was formatted so each participant automatically got all of the e-mails. This meant I was getting 50 to a 100 a day; far too many for me to deal with. To make matters worse, a number of the long-time survivors died, which became depressing, so I terminated my access to the site. I much prefer the “breast cancer online support” site, which has titles for each e-mail so I can select the ones I want to read.

I have never been suicidal; it defies my cerebral logic. After all, why would I kill myself when so much effort has gone into keeping me alive. The closest I have come to any suicidal thoughts was when I came home from the hospital after the stem cell transplant. I could not sleep for at least two days, probably because my body was trying to readjust to a non-medicated state. I finally had to take a mild sleeping pill for about a ten-day period to return to my normal sleeping pattern.

I have consciously rationalized the “bc” experience as being positive and life-pro-longing rather than life threatening. After all, I am now eligible for extensive screening and monitoring for all types of cancers, increasing my chances of discovering any problems “early” and making me feel safer than if I had never been diagnosed at all. I have also experienced an outpouring of love and support from family, friends, co-workers, and even strangers, which I could never have imagined. After losing my hair, I learned to appreciate my face, which I had previously thought was not attractive without wearing bangs to hide my high forehead. Prior to the diagnosis, I was a workaholic who rarely took much time off. I've told myself that GOD saw the need for me to take a sabbatical, and that is why he gave me the eight-month break.

Returning to work was truly a gift. But, I'm somewhat surprised at how the “ bc ” experience has impacted my work ethic. Frankly and honestly, it has made me less rather than more tolerant of lackluster work performance, either in myself or in others. My husband thinks my feelings on this issue have more to do with my age than with “bc,” and I am correct to promote performance management. I think there are times when I feel what I call “emotional overload,” because dealing with “bc” saps so much of my energy and feelings. Another theory stems from my innate sense of responsibility, coupled with an increased sense of urgency, on my part, as I'm not always sure “how much time I have left.” But when those feelings occur, I also remember that no one knows how long he/she will live, and, in fact, a number of others whose long life seemed far more certain than mine have since died.

It Takes a Village to Save a Life

Without question, my triumph over “bc” and my survival reflect the power of GOD and the importance of prayer. The poem, Footprints, aptly summarizes my feelings.

One night I had a dream… I dreamed I was walking along the beach with the Lord and across the sky flashed scenes from my life. For each scene I noticed two sets of Footprints in the sand; one belonged to me, the other to the Lord. When the last scene of my life flashed before us, I looked back at the footprints in the sand. I noticed that many times along the path of life, there was only one set of footprints. I also noticed that it happened at the very lowest and saddest times in my life. I questioned the Lord about it. Lord, “You said that once I decided to follow You, You would walk with me all the way. But I have noticed that during the most troublesome, times in my life, there is only one set of footprints. I don't understand why in times when I needed You, the most, You would leave.” The Lord replied, “My precious child, I would never leave you during your times of trial and suffering. When you see only one set of footprints, it was then that I carried you.” [16]

I know GOD has strategically placed many “supporters” in my life, and especially in the last five years. In fact, I have never felt so loved. I have written this section to recognize and record the contributions of many rather than to brag about my support systems. Moreover, I have often been asked how one can help someone who has been diagnosed with cancer. This chapter provides ample examples.

I am blessed to have a husband who has been supportive and encouraging in a thousand ways. He went to doctor's visits with me and left work early every day to travel to Baltimore during the stem cell transplant. Without complaint, he has also assumed the burden of many of the household chores, because I am often tired when I get home from work. He gave me neupogen shots to elevate my white blood count and immune system, when my family friend whom I call Aunt Ada , a retired nurse, was not available. I wouldn't even do that for myself.

My mother and my sister, Jacqueline, a.k.a. Jiffy, live nearby, and they have also helped in many ways. I get emotional when I think how my mother, as the trouper she is, was devoting her time and energy to fighting for my life exactly 50 years after she had similarly cared for me as she carried me in her womb. Indeed, she is a very resourceful person. Before I could fathom the concept of the stem cell transplant, my mother, after driving one very nervous round trip to Baltimore, arranged for her club members and friends, many of whom were in their 70s and 80s and who had volunteered to help, to take turns driving her to Baltimore so she could visit me in the hospital every day. My brother, Jackie, and his wife Cynthia also helped. Jiffy sang inspirational morning messages to me daily for months. Her beautiful poem, “My Sister's Pain is My Pain,” is published in the 1997 volume of the National Library of Poetry. [17] My cousin, Gretchen, who is also like a sister, called me every night before she went to bed for four years. My Aunt Louise, who lives in Chicago, sent me scarves, and her daughter Louise, who was my first friend in life, transported my mother to Baltimore on one of her visits to the hospital. My Aunt Harriet and Uncle Harold, whom I talk to every week, came to visit me from New Jersey and my godmother, Aunt Selma, gave me a very special gift, a prayer through Daily Word . I carry Daily Word in my purse and have kept all of the copies over the last five years.

My friends have also been “there for me.” When my life-long friend, Cheryl, came by to help me prepare my will, soon after the diagnosis, she made it clear that she was there for me; not simply as an attorney, but as my friend. She is a person who “lives” her commitments, which began with visits before each chemo treatment. She was the first to see my bald head, having stopped by just after I had “washed my hair away.” She never looked shocked or startled by the sight; instead she seemed so very glad to see me. She also came by each night before my chemo treatments so we could sing inspirational hymns. I found singing to be energizing, which I greatly needed given the fact chemo and other drugs cause considerable fatigue. I believe it also increased the effectiveness of the chemo treatments the next day. We now have monthly “sing-a-longs” with a wider group of family and new and old friends, including my Mom, the coordinator, and Jiffy. Elsie, Gretchen, Aunt Elizabeth, Audrey and “Missy” are regulars.

“ Bc ” has brought old friends and classmates back into my life. Janice Hundley Young and I were in a mother-daughter club, which my mother started when I was 2 years old. Janice took me to several movies to help get my mind off of my troubles. The cancer brought Audrey and “Missy” back into my life after a nearly 20-year estrangement. Audrey and I were in school together from the first grade through high school. She saw me at the grocery store in 1997 during the period when I had lost my hair. Upon our reunion, I learned that “Missy” had successfully battled breast cancer over ten years before. I remet , Pat, another high school classmate, in Dr. McKnight's office while we were both getting chemo. We continue to keep in touch. She has made me especially proud by participating in the Avon three-day, 60 mile “Walk” for two consecutive years.

Another set of friends, led by Faye, Evelyn , and Joyce, participate with me and John in the annual Race for the Cure. I call it my birthday celebration, even though my birthday is several months later. I'll never forget how last year Evelyn , who had overslept and missed our group trek, was so committed she drove to the Race by herself, parked and then walked a long way to the Race, then walked the entire route, only to then have to walk another long way back to her car. John and I try to show our appreciation by hosting a brunch after the Race. Fortunately, last year Evelyn was also able to make it as well.

With one exception I have had especially strong support from my male friends. In fact, I have been blessed to have a number of close, platonic male friends throughout my life. My closest friends, outside of my husband, are Jerome and his wife, Cynthia. I met Jerome when I started the Ph.D. program at American University. He was preparing for his comprehensives, but he took time out to help me with several of my courses. He also introduced me to his wife and daughter, and they “adopted” me as a sister and aunt from the start. They are the kind of friends that are with you through thick and thin.

For example, the first time I had a “bc” scare was in the early 1980s, when I had my first biopsy. Jerome and Cynthia had taken their daughter to France, and Jerome had returned to the U.S. a few days early, without his family, to defend his dissertation. We went to dinner afterwards to celebrate. I deliberately did not tell him about the surgery until after dinner, and I regretted interrupting his “joy.” When I did so, tears welled in his eyes. He immediately took charge. Although he was tired and suffering from jet lag, he insisted on taking me home to make sure I was all right. He picked me up to go to the hospital the next morning, at 5 a.m., and he returned later to take me home. Two days later, at 6 a.m., he accompanied me to my surgeon's office to get the results, which were benign.

Finally, I have to mention the Cacho family, who adopted me as the “eldest daughter” in 1973, after I met Mr. Cacho while both of us were on mission in Ethiopia; I for USAID and he for the World Bank. He and his family are originally from Belize, formerly known as British Honduras in Central America. He subsequently became a mentor to me, and he has served as a surrogate father since my Dad's death. Upon learning of my diagnosis, the family immediately dispatched my “sister” Carolyn, a nephrologist in Cleveland, to D.C. to check on me. Carolyn has also followed all of my pathology reports and subsequent tests. Although ten years younger than I, she has been a role model for how to face a life-threatening condition, as she has had to do the same because of lupus. Her sister, Joyce, gave me some of the best advice I received during this period; that is, to love myself and to make sure I treat myself to something special every day. (My treat to myself several days after every “chemo” treatment was a steamed lobster dinner.) Brother Laurence and his wife, Nadean , are live in the D.C. area. They stopped by frequently to bet first-hand reports for the rest of the family. They have now blessed the family with a son named Malcolm. Sister Denise called several times, energizing me with her ebullient personality, which is contagious even through the telephone.

Many of my neighbors have been especially kind. I was President of the North Portal Civic Association when I was diagnosed. The members of the Executive Committee agreed to hold meetings at my house, so I would not have to leave home. Gwen Harllee , the first Vice President, began running the civic association meetings for me and she agreed to serve at President the following year. I met my neighbor, Winnie Greaves, during this period, and she has frequently sent food, especially her scrumptious Jamaican meat patties, and she always includes us in her family gatherings.

Not all of my friendships have been bolstered by the “bc” experience. At least one friend is uncomfortable with the whole experience and can't bring herself to even participate in Race for the Cure. Yet, she has been extremely supportive in many other ways. Moreover, I understand her reticence is really a reflection of her own fear of the disease. I'm not in a position to be critical because I have, from time to time, had the very same feelings myself, both before and after my bout with “bc.”

I also often feel like I am “on the outside looking in” when I am with some of my girlfriends. It is as if no one knows what to talk about with me, other than “bc” and everyone gets tired of that topic, including me. Yet, I often find myself bringing it up in conversation, as if I cannot separate myself from the “bc” experience. I also confess that I have withdrawn or retreated from some of my friendships. Some of this was conscious, as I simply had no energy to continue to participate in activities, and I thought I was sparing my friends the pain of my demise. As a consequence, I am more responsible than they for my feeling “left out.”

John's best friend, Greg Lewis, who is also one of our classmates from Oberlin, his wife, Maria, and their two sons, Brian and Jordan, live in Chicago, and they have provided tremendous support. Brian is John's godson. We spend at least one week vacationing with the family in Cape May every summer. After my diagnosis, Maria sent me an amethyst necklace because she knows purple is my favorite color. She assured me that it was not expensive, but I wear it every day as a good luck charm, replacing my one-carat diamond necklace I previously wore. [18] In addition, the Lewis family and our friends from Cape May, Dwight and Karann Coleman, surprised me with a visit and party a few weeks shy of my 50 th birthday, to celebrate my survival.

Speaking of good luck charms, I have at least one friend who would think this is sacrilegious, but I also carry a small pet rock in my purse that my Uncle Buddy gave me. One of his granddaughters painted it with an eye, so he gave it to me to it symbolize the fact he is always watching out for me.

GOD has even reached out to me through strangers. As I was about to undergo my first mastectomy, a woman about to undergo her second mastectomy, reached out for my hand and told me she was praying for me. I took her words as a “message from GOD that I would be all right,” which brought me immense comfort and peace of mind.

Even our beagle, Asta , who has since died, was an effective caretaker, providing me companionship during the day while I was on leave from my job and keeping me from feeling alone or lonely. She would curl up in her bed in my bedroom and every time I left the room, she followed as if to ensure I would be okay.

I am not active in any formal cancer support groups, but I maintain contact with a growing network of other breast cancer survivors. They are my informal “support group.” This is not hard, because of what my doctors have said is an epidemic of breast cancer in the Washington metropolitan area. My life certainly attests to that.

For example, “ bc ” has touched the lives of many of the employees where I work, regardless of ethnic background. There are 30 women in my workplace, and four of us are breast cancer survivors; at one point there were five of us, including my boss, Chairperson Marlene Johnson, who developed the disease two years after I did. We were surprised when another woman was diagnosed, because she had been a strict vegetarian and organic food afficianado for at least 20 years. At least two of the 30 men in the agency have lost their mothers to the disease. An even more startling statistic is the fact that out of 8 men and 4 women, of diverse racial and ethnic backgrounds, along one hallway, there is one breast cancer survivor (me); two males, one Black and one Hispanic, whose mothers' died of breast cancer; one Indian male whose wife died of breast cancer nearly two years ago; one White male whose mother-in-law is a “ bc ” survivor such that now his wife and only child, a daughter, are at increased risk; and one White male who lost a close friend to breast cancer.

Moreover, there are other “ bc ” survivors in virtually every organization and group to which I belong:

In my predominantly Black, high-income neighborhood of about 200 homes, there are at least six “ bc ” survivors; two of us are on the same block. One of the six is a White woman who is the wife of the City Administrator. Her neighbor in the house behind her is also a “ bc ” survivor.

In my family church, three of the six women on the Board of Trustees when I served were “ bc ” survivors.

In the current church that I attend, which has a relatively small congregation, there are at least three “ bc ” survivors.

When I served on the Board of Governance of the Girl Scouts of the National Capital Area, two of the nine or ten women (one White and one Black) were “ bc ” survivors.

In the sing-a long group, there are now two “ bc ” survivors. (One of the existing members was diagnosed last year.) A number of others, friends of members of the group, have also periodically joined in the singing.

My sister-in-law (my husband's brother's wife) died from “ bc ” in 1995, after an eight-year battle. Who would have thought two brothers would both have wives with breast cancer.

My mother has a number of friends, such Dr. Trudie Haugan , who is White, and Gloria Morris, who are “ bc ” survivors. They have both reached out to me throughout my battle.

Finally, I recently attended a graduation ceremony for junior high school girls who had participated in a “High Expectations” program hosted by my friend Audrey and her Links chapter. I entered the room and decided to sit at a table where three other women were seated. One appeared to be in her 70s or 80s; she had beautiful creamy chocolate skin and long white hair that was rolled neatly in a plait and bun. With her were two of her daughters. One was the grandmother of one of the girls in the program. All three were rightly proud, and you could tell how active and supportive they were of their teen family member. As we talked, I was amazed to learn the elder woman was a breast cancer survivor; one daughter had had colon cancer and the other had had uterine cancer. Needless to say, with only four of us at the table, we were batting a 100.

My employer has offered me considerable flexibility. On treatment days, I leave work early, but I more than make up the time by working longer hours on the other days, and working from home in the evenings. (At my own expense, I have set up a home office, with computer, fax, e-mail capabilities.) I can also access my office computer files from home and I can retrieve my voice messages. The Chairperson Marlene Johnson had permitted me to work from home during the “chemo” treatments before the stem cell transplant. Co-workers such as Lystra Khan, Annette Johnson, and Dona Burney, also helped me through their prayers, food, caps, and frequent calls and visits. I still have, in the entrance foyer of my home, the purple (my favorite color) silk flowers given to me by Daphne McCoy and others when I began the stem cell transplant. I could not have real ones because they might attract insects that could be dangerous to me when my white blood count was low and my immune system was most fragile and weak.

I am also particularly indebted to several colleagues who, without additional remuneration, helped lighten my load as Executive Director of the District of Columbia Public Service Commission after I returned to work. They are Commissioner Agnes Yates; Jesse P. Clay, Jr., Commission Secretary and Deputy Executive Director for Administrative Matters; Dr. Joseph Nwude, Chief Engineer who also served unofficially as Deputy Executive Director for Regulatory Matters; and Richard Beverly, General Counsel. While I was on leave, Norman Reiser assumed supervisory responsibilities over the technical staff and Lawrence Crocker, Esq. served as Acting Executive Director until he left a few months later. “Crocker” also had had medical training, so he gave me neupogen shots for my white blood count while I was on Taxotere.

I was especially touched by a gift from a senior official at the electric company, which is regulated by my agency. It was a small, brightly colored purple African violet. She said she paid about a dollar for it. But, its value was priceless to me. Consequently, I returned it to her so as not to violate any ethics rules because at the time, unbeknownst to her, I was working, part-time from home, on a merger case involving her company.

My husband received the same kind of support from his employer. His supervisor gave him similar flexibility so he could visit me in the hospital every day and take me back and forth to Baltimore almost every day in the following weeks. His colleagues congregated at our house for an impromptu party, and they sent cards and called often with well wishes.

I am also fortunate to have outstanding physicians, who are both eminently qualified and willing to work with me as a team. I believe my quick response, when I discovered the lumps, truly saved my life from a very aggressive (meaning fast growing) cancer. Finally, there can be no doubt that I am still “alive and kicking,” thanks to HERCEPTIN. I pray many other women and men with this disease will have the same outcome.

I am eternally grateful and thankful for all of the support I have received. As an expression of our appreciation, my mother and I hosted a Gratitude Party in October 1997, to celebrate my 50 th birthday. Our guests were many of the people who had supported us during the year. They were the honorees rather than I.

Lessons Learned

1. Despite all I and those around me have had to go through, on net, I view the “ bc ” experience as positive. When I first began writing this story I defined myself in the first sentence in terms of my race and gender. Now I have added the term survivor, a reflection of my triumph through the help of so many others.

2. I got breast cancer, in a relatively advanced stage, even though everything that could have been done beforehand was done. Quick action, after the discovery, was vital to my survival.

3. Don't panic. Increasingly, breast cancer, even when deemed to be incurable, is not necessarily life-ending; at least not any time soon. It is fast becoming a chronic illness, like diabetes, that can be effectively managed for many years.

4. GOD loves me, as he does everyone. His love is not reflected in the fact I am still alive and well because at some point all of us will die, whether it is from “bc” or something else. Rather, GOD's love has been vital in overcoming the inherent trials and tribulations faced on my journey through life. These experiences have served to deepen my love, gratitude, and appreciation for life and the good times that abound.

5. Breast cancer exacerbates any and all insecurities a woman may have regarding her appearance. However, it can also be an opportunity to reevaluate those issues in oneself, and hopefully, as I did, find beauty where I had never seen it before.

6. Choose doctors who will take an interest in you as a total person, not just in your medical condition, and who will fight for your life and interests.

I am eternally grateful for how my doctors have handled what many might call “negative news” (like the metastasis). Unlike the oncologists treating some of my friends, none of my regular doctors took away my hope. Instead, when I was first diagnosed, Dr. Downing, my gynecologist, told me that aggressive cancers were rather easy to kill. I asked Dr. Leffall if he thought my case was winnable and he said yes. (If he really had doubts, I'm glad he did not convey that to me. [19]) Dr. McKnight said I was “at high risk,” and I deliberately did not ask the obvious follow-up question, “for what.” He later said there was a 100% probability that I would have a recurrence without the stem cell transplant. With the transplant, the odds were reduced to 30% - 40%. I still did not know or understand what was meant by “a recurrence,” but at that point, ignorance was bliss. The closest Dr. McKnight came to explaining the implications of the recurrence was about a month after the metastasis was discovered and we had some evidence Taxotere was working because my tumor markers were declining. He then told me and my husband, who accompanied me on all of my visits, that he unfortunately did not think I would see the long-run results I was hoping for. I asked him why and he said because they did not have tests which could conclusively show whether the cancer was gone. Meanwhile, Dr. Malkovska told me, “Some women with bone mets live for 15 years and, with the new drugs coming on the market, the prognosis should be even brighter.” Only one physician, a renown breast cancer specialist Johns Hopkins, who is also a woman, warned me that I was “terminal” and should not count on HERCEPTIN saving me since it worked in only 15% of the cases. She advised me to consider retiring and enjoying what time I had left. Fortunately, she told me this four days after my first HERCEPTIN treatment, and I was already feeling great. In fact, I came home from my meeting with her and raked leaves for the first time in a year. I sure did not feel like I was about to leave this earth.

7. Nurses are an undervalued resource. When I have a question or fear, I often ask the nurse in my oncologist's office rather than trying to reach the doctor. When you think about it, they have more frequent contact with patients, and therefore are quite knowledgeable about side effects, etc.

It is difficult to describe my relationship with the nurses in Dr. McKnight's office without being emotional. They work with people every day whose mortality may be imminent. Yet, they share not only their expertise, but their hearts as well.

For example, nurse Lisa Ford (now Hawkins) obtained information on Xeloda for me after I saw a report on the drug while watching TV during my treatment. She and I became friends, and she invited me to her bridal shower, wedding, and open house for her newly bought townhouse. Although Lisa no longer works with Dr. McKnight, we keep in touch. Tyanne Calhoun, the current nurse, as well as Carolyn Moore, the receptionist, are equally helpful and supportive. They are forever offering encouragement and hope, which is just as important as the medicine I receive.

8. Take someone with you during your doctor's visits; you are likely to tune in and out as you are flooded with information and choices.

9. Maintain a file of your pathology reports, test results, and other records, even if you don't read them. Share them with your other physicians so they are aware of your treatment and progress. [20] Be willing to compile information for them.

10. Maintain a log of your health insurance claims, which are likely to become numerous during your treatment.

11. Selection of one's health insurance carrier can be a matter of life or death. I have been fortunate to have an insurance carrier that has been willing to cover all of the treatments, and has not contributed to any delay in my getting needed tests and drugs.

12. Love thyself. Do something for someone else and for yourself each day; sometimes they are the same thing because giving to someone else is often a gift to yourself. Reach out to people; don't isolate yourself. Surround yourself with positive people.

13. Don't feel guilty when you are feeling down. Accept the negative feelings as “part of the process,” and then consciously try to rationalize your way out of it, no matter how ridiculous others might find your reasoning..

14. Don't waste time second-guessing yourself or your past decisions. There is much more value in using that energy for preparing for the future, not rewriting the past.

15. Keep in touch with your spiritual self, through your faith in GOD, yoga, or whatever works for you.

Future Fears and Hopes

HERCEPTIN has truly given me back my future, and I pray for a long and productive life. I am also hoping that one day I will no longer need to take HERCEPTIN. In addition, I wish that it could be administered orally, through a pill, rather than requiring infusion through the veins so I can reduce the risk of more blood clots. (However, I've been told this is unlikely.) At the same time, I am fearful of stopping HERCEPTIN. After all, at least I feel we are continually fighting the cancer with HERCEPTIN. Barbara Bradfield's story is the first evidence that one can stop HERCEPTIN and the cancer does not return. Most of all, I hope there will be many others in this category, including me, one day.

My Sister's Pain is My Pain

My sister's pain is my pain.

I feel the fire engulfing me,

But every morning I sing her a song to cheer her up,

Yes, every morning I sing her a song to cheer her up.

In the evenings I search for just the right song.

While I pray, lovely lyrics pop into my head.

I sleep satisfied, then I arise and sunbeams soothe me as I

Thank God for my inspirational voice.

Harmonious hymns roll from my lips.

Popular tunes create dreams and help our hearts dance.

Childhood jingles capture golden moments again,

But when my sister sings with me…….

Those are the best mornings!

Dear Lord, hear us and set us free,

Cleanse her body and her soul.

My sister's pain is my pain.

I wonder what she's going through,

So, every morning I sing her a song to cheer her up,

Yes, every morning I sing her a song to cheer her up,

Because there's nothing more I can say or do.

POSTSCRIPT

What the Term “Survival” Means to Me

Writing this story has inspired me to ask myself how I define the term “survival.” Before writing this story, I visualized my life over the last five years as follows:

I saw GOD walking with his hands held high in a cupped manner. The hands supported a throng of people. The people were holding me up, as I lay prostrate in an inert form, as if I were an inanimate object being carried along. In other words, I viewed all the action stemming from GOD and others and none of it from myself. It was not until Commissioner Agnes Yates, who had agreed to read one of the early versions of the draft, commented that she was struck by how proactive I had been throughout the process that I realized I had also played a significant role in my survival.

I'm not surprised that I was oblivious to my proactive role. It fits my personality. I have never viewed my talents, education, or achievements to be remarkable or noteworthy. By personality, I am shy and reserved, which, when combined with my many “hang-ups” as described earlier, means I am most comfortable with anonymity, serving behind the scenes, while relishing the success of others who prefer to bask in the limelight.

Instead, I don't consider just being alive despite “ bc ” to be an example of the term “survival.” Rather, I think of overcoming the trials and tribulations of life's journey. Thus, I view my ancestors as survivors and not myself, for they exhibited courage and overcame enormous obstacles, and their many accomplishments were achieved under conditions far worse than I have ever had to face. Moreover, this lineage has not swelled my head, because I believe it is not just my family's history, it is America's history, both for Whites and for Blacks. I also believe many people have inspirational heritages. Thus, it is with great humility that I take pride in those who have gone before me, and my unwavering devotion to excellence and hard work reflects the fact I hold myself responsible for continuing in their tradition.

My mother has chronicled her father's family history in a book entitled, Linking the Gibbs Chain . [21] My great great great grandfather, Jonathan Clarkson Gibbs I (17?? – 1831) was a “free” man in Philadelphia who became a Wesleyan Methodist minister there. [22] He was a also a carpenter, and he taught his two sons the trade. Together they built the first AME Zion church in America.

His son, my great great grandfather, Jonathan Clarkson Gibbs, II (1821 – 1874) was the third Black graduate of Dartmouth in 1852. From there, he graduated from Princeton Theological Seminary. His long distinguished career included a ministry in Philadelphia, and serving as Secretary of State of Florida in 1867 and Florida State Superintendent of Public Education (for Whites and Blacks) in 1872. His positions and activism made him a target of the KKK to the extent that he slept in his attic with an arsenal of weapons to protect his family. It is alleged that he was poisoned and killed by the KKK within hours of giving a three-hour speech at a Republican convention.

Jonathan C. Gibbs II's brother, Mifflin Wistar Gibbs (1823 – 1915), had his own stellar career. He left Philadelphia for California as part of the Gold Rush, and founded a newspaper and boots and shoe store. Although California entered the “union” as a free state, like in the North, it passed laws restricting Blacks' ownership of property, so he migrated to Vancouver, Canada, where he became a millionaire in the fur exporting business. While there, he was elected to the Common Council of Victoria, and he helped finance the Underground Railroad. He also aided the settling of 800 blacks in Victoria Island. Well known among abolitionists, he also accompanied Frederick Douglass on a dangerous tour in New York. After the Civil War ended, Mifflin returned to the “states,” settling in Oberlin, Ohio where his wife had lived and his friends, the “Tappan” brothers, called home. His wife, the daughter of the U.S. Vice President under Martin Van Buren, Richard Mentor Johnson, and a slave, had already graduated from Oberlin College, the first college in the U.S. to admit Blacks, and Mifflin graduated from the law department of the Oberlin Business College in 1869, exactly 100 years before I graduated from Oberlin College in 1969. Finally, Mifflin became the first black municipal court judge in the U.S. in 1873 and U.S. Consul to Madagascar (1898- 1901).

My great grandfather, Thomas Van Renssalaer Gibbs (1855 – 1898), son of Jonathan C. Gibbs II, attended Howard University. In 1872, he became the third Black appointed to West Point. Despite above average grades, he left West Point and matriculated at Oberlin College until 1875, when he left after the death of his father. He returned to Florida and was elected to the state legislature, where he was instrumental in getting legislation passed to establish a normal school, which ultimately became Florida A&M University. He served as the school's first Vice President until his untimely death in 1898. He is buried on the campus of the school.

Another great great grandfather, Congressman John Willis Menard (1838 – 1893), was from Louisiana; the father of Thomas Van Renssalaer's Gibbs' wife, Alice Menard Gibbs. He became the first Black elected to the U.S. House of Representatives in 1868. However, because of his race, he was paid but never seated.

Mifflin's daughter, Ida Gibbs Hunt (1862 – 1957), was accomplished in her own right. She earned both A.B. and M.A. degrees from Oberlin College in 1884 and 1892, respectively. She and her friends, Dr. Anna Cooper and Mary Church Terrell, were three of the first black women to graduate from college. Cousin Ida, as I called her, was a founder of the Phyllis Wheatley branch of the Y.W.C.A. She taught English for many years, before marrying her father's clerk, William H. Hunt, who became a U.S. Diplomat like her father. She spoke seven languages, and lived in France, India, Guadeloupe, Liberia, and Madagascar for nearly thirty years. As a civil rights leader, she served as Secretary to W.E.B. DuBois ' Pan African Congress. My family and I lived with Cousin Ida and Cousin Billy until their deaths. He died when I was four and she died when I was ten. Together, they sparked my subsequent interest in international affairs.

With his five siblings, my maternal grandfather, Dr. Jonathan C. Gibbs III (1890 – 1982) was orphaned at age eight, after his parents died eight days apart. Yet, he graduated from Howard University with both undergraduate and medical degrees. After retiring as a family practitioner in New Jersey for many years, he continued to wake up each morning until a few weeks before his death at the age of 92, with people lined up in front of his house, awaiting his wise and expert counsel.

My maternal grandmother, Catholine Allen Gibbs (1889 – 1973), was born in Leesburg, Virginia, the youngest child and only daughter of Alfred and Eliza Allen. She had five brothers, with the oldest 20 years her senior. In May 1992, my mother, Aunt Harriet, Uncle Harold and I purposely went to Leesburg to trace our Allen roots. In the genealogy section of the main library located in the middle of town, we successfully found the 1900 census on microfilm. My great grandparents, Alfred, a house worker and Eliza, a mulatto seamstress, were listed as married 31 years, with six living children. They were uneducated, but they owned their mortgage-free home. According to a 1946 entry in my mother”s wedding book, my maternal great great grandparents, were Adam and Catherine Allen. Presumably, they were slaves who were eventually freed.

Back to my grandmother, “ Ganna ”, as I called her, graduated second in her class from Minor Normal School, the precursor of the D.C. Teachers College. She was a D.C. domestic science teacher eight years before she eloped with my grandfather to secretly marry because teachers at that time were supposed to be single. Her teaching experience enabled her to supplement the family's income during the Great Depression so my grandfather could continue to meet the needs of his patients who were unable to pay him. She later returned to the work force again to help support their three children who were attending Howard University simultaneously. In 1962, she became the first Black member of the Passaic, New Jersey Board of Education.

I am equally proud of my lineage on my father's side of the family.

My great great grandmother, Francis Quarles, was a slave owned by Master Dick Bibb in Virginia. She had one daughter, Mildred, (1856-1938), by Master Bibb . Francis was allowed to marry a Black man, and, after the Civil War ended, they moved to Louisa County, Virginia, where they raised five daughters. However, Mildred's stepfather would not accept her, because she was light in color and thus a reminder of slavery, so she was left to work in a boarding house in Alexandria. She never received any formal education, for her husband, John Webb, whom she met during his frequent stays at the home while traveling as a minister, did not believe women needed to be educated. Yet, she fulfilled her lifelong ambition to read when she was in her 70s. My father says he was surprised when, as an adult, he learned she did not know how to read, because he recalls her “always reading her Bible.” Apparently, she had memorized most of it.

My grandmother, Esther Webb Fauntleroy (1887 – 1979) and nicknamed “Lady Esther” by my mother and “Gram” to me, my siblings and my cousins, wanted to attend Oberlin College, but her father sent her to dressmaking school instead because he did not believe girls needed to be educated. She raised three children single-handedly after her husband, Frederick Douglass Fauntleroy, died of pneumonia at the beginning of the Great Depression in 1929, while performing construction work to feed his family after his contracting business had failed.

I don't know much about the Fauntleroy side of the family. My 8 th grade history teacher gave me a book which referenced the “White” Fauntleroys of Virginia who lived in the same area where my paternal grandfather lived. Susan or Mary Fauntleroy was the daughter of a wealthy landowner in Virginia, and she was engaged to George Washington for a short while before deciding not to marry him. There are also “Black” Fauntleroys who were “free” that are listed in the first U.S. census in 1790. My theory, therefore, is that the “Black” Fauntleroys were at one time slaves who were “freed” early by their masters.

My father, John Douglass Fauntleroy (1920 – 1989), had a high IQ, according to my grandmother; an attribute that my sister inherited but I did not. Although he was the youngest of three children and had an older brother, upon the death of his father, he, at the age of nine, informed his mother that he would “take care of her.” He fulfilled that life-long pledge. He immediately got a number of jobs despite being underage, including serving newspapers both before and after school, so he could “support” his family. He wanted to be a printer, but the unions were closed to Blacks, so, on the advice of a counselor, he entered a four-year night law school just as he turned 16, while working full-time during the day to help support his older sister's college education. Graduating at 20, he was too young to take the bar exam. When he turned 21, he took and passed the bar, thanks in part to tutoring by a White attorney at the U.S. Department of Interior who learned from one of Dad's classmates that Blacks were not allowed to take the bar prep course. Thus, Dad became the youngest lawyer in the District of Columbia. In 1947, the year I was born, he entered American University on a part-time basis, while working full-time in his law practice and raising a family. Six years later, he received a B.A. in Political Science. Recruited by the American Veterans Committee, he successfully argued for the integration of Gallaudet College, the nation's only university for the deaf in Miller vs. Board of Education. This case was one of the legal precedents for the landmark 1954 Brown vs. Board of Education , Topeka, Kansas decision that desegregated public schools throughout America. In 1967, President Lyndon Johnson appointed him to be an Associate Judge in the District of Columbia. Prior to joining the bench, he was politically active, including a hard-working advocate for home rule for the District.

My Dad is my hero, not because of the degrees and positions he has held, but because he was a consummate father to the day he died. He was also the epitome of humility, always willing to shine the spotlight on others rather than on himself. For example, the night before he died, as I held his warm, soft, hand and rested my head on his bed in the hospital, he rang the buzzer for a nurse. I quickly looked up, fearing that something had gone wrong. It turns out that he was calling the nurse so she could get a pillow for my head and I could be more comfortable. To the end, he was thinking of me like he did many others, rather than of himself.

Mentors and My Career

Facing the prospect of death has led me to reflect back on my life and career. I have already expounded on many of my life experiences. Thus, the purpose of this section is to summarize my views on my nearly 40-year career, for I began my first job, albeit just for a week or two, when I was 15. Looking back, I must admit that I have very positive and warm feelings about my opportunities and choices, and there is not much that I would change, even with the advantage of 20/20 hindsight. That is because I have benefited greatly from the guidance and leadership of a a number of mentors. I therefore, take this opportunity to introduce a few of them.

While in college, I worked during the summers in the Legislation and Opinions Division of the D.C. Corporation Counsel since at that time I aspired to be a lawyer. I also worked there for nine months after graduating from Oberlin College a semester early and before entering graduate school at Johns Hopkins School of Advanced International Studies (SAIS) the following Fall.

While I was working at the D. C. Corporation Counsel, two women, Bettina Hall and Mary Brazelton Jordan befriended me by “adopting” me as their “little sister.” Both women were about ten years my senior. Bettina was married with three children and Mary was a divorced single mother of two. They took me to lunch with them every day, and they taught me many life skills. For example, on pay day, the first thing they did was go to the bank and pay a number of bills; making it clear that their financial responsibilities to their families came first. Bettina was paying for some beautiful blue drapes in her living room, and she made sure that she kept up with her payments. This meant sometimes she could not afford to splurge on a new outfit or a grand lunch, and she was never embarrassed to so indicate. Both women were very attractive and caught the eye of more than one man in the District Building. But they never allowed this attention to cause them to sacrifice their morals or family responsibilities. In a few instances, they accepted lunch invitations, but they insisted that I go along, perhaps as a chaperone. Finally, I will never forgot their wise counsel when I came to work one day and boasted that I had attended a party where marijuana was being smoked. Even though I did not personally smoke the “weed” because the smell nauseates me, to fit in, I gladly volunteered to make the cigarettes in another room. This was right about the time my Dad was being investigated by the FBI in anticipation of his appointment by the President to a judgeship. Bettina and Mary wasted no time in scolding me and educating me to the fact that I had a responsibility to my parents not to get in trouble. They also warned me that I could have been arrested just like my friends even if I had not been smoking. I would have “died” had I awaken one morning and seen my name in the paper for violating the law or if something I had done had kept my Dad from getting the judgeship.

Working at the D.C. Corporation Counsel also had a major impact on my career. I was “turned off” by the fact the attorneys were not free to analyze a situation and make recommendations based on their legal analysis. Rather, the position to be taken was usually decided by others, and the attorneys were then told to prepare briefs in concert with those decisions. If an attorney did not agree, his/her work simply did not move. I never wanted someone to “think for me” in this way, so I chose to attend graduate school instead of law school. I have never regretted that decision, despite my naïve perspective at the time.

I worked in the international arena for over ten years, thanks to my undergraduate degree in international affairs and international travel during the first semester of my junior year when I was a student on World Campus Afloat, sponsored by Chapman College in Orange, California.

While at SAIS, I worked part-time for TransCentury, a consulting firm, where I got to go on mission to Ethiopia, Nigeria, and Botswana, Lesotho, and Swaziland. On the mission to Ethiopia, my colleagues and I decided to travel to the remote, mountainous area of Lalibela , where Coptic churches are built into the ground. It was also one of the poorest rural areas I have ever visited as many of the residents only wore animal skins rather than cloth, and the “market” had only a few grains of rice on the ground. It also had fleas, which feasted on my legs because they were caught in the knit of my pants. On this trip, I met a very distinguished man, who I subsequently learned was a World Bank economist, Mr. C. Patrick Cacho . He was a citizen of Belize, a country formerly called British Honduras in Central America. He was alone, so my colleagues and I invited him to join us for lunch. During the conversation, I learned that he lived within a mile of my house. Upon our return home, he invited me to his home to meet his wife and children. I immediately became a member of the family.

Not long thereafter, I applied for a summer internship at the World Bank. Mr. Cacho agreed to serve as one of my references. On my own initiative, I sent my application to both the personnel office and two Eastern Africa divisions where I wanted to work. The division chiefs knew Mr. Cacho and respected his opinion, so they notified the personnel office that they wanted to interview me. Meanwhile, the personnel office wanted me to work there, so they called me and cancelled my planned appointment with the two division chiefs so that I would be a “no show” for theor interviews. Fortunately, one of the division chiefs saw Mr. Cacho on the elevator and informed him that I had not come to my interview. Further investigation revealed the duplicity, and the division chiefs agreed to hire me.

Mr. Cacho has also played a significant role in my decision to become an Economist. He tutored me in international economics one summer, and through that experience, I decided to take several economics courses, at American University on a non-degree basis. It was there that I found my “passion” for the subject matter.

Based on my success in the summer internship program at the World Bank, I was invited to work part-time at the Bank while continuing my graduate studies. I was especially fortunate to work on an income distribution project for a visiting German professor, Dr. Wilhem Brandes . Contrary to tradition, he allowed me to present the results of our research to the World Bank board. Although I was not in the Young Professionals program, my division chief, Richard Frank , ensured that I get some of the same experience, including allowing me to serve on a mission to Afghanistan. This opportunity was highly unusual since it was thought that women could not “work” in Afghanistan and research assistants such as I did not normally go on mission. Yet, he successfully advocated on my behalf all the way up to the Regional Vice President, who remembered me from my presentation with Dr. Brandes before the Board.

During this same period, I was courted by Dr. John Beyer , President of Robert R. Nathan Associates (RRNA), an economic consulting firm. He subsequently hired me as an Associate. I later was promoted to Senior Associate. The firm never typecast me into “Black-oriented” projects. Rather, I worked on both international and domestic projects in a number of applied branches of economics, such as public utility economics, antitrust economics, forensic economics, health economics, etc. I designed program evaluations for a number of international projects, which enabled me to travel to Sri Lanka, Nepal, Bolivia, and the Northern Marianas Islands.

I left RRNA in 1980 to join the economic consulting firm of Dr. Andrew F. Brimmer , the first Black appointed to the Federal Reserve Board. I was excited about the prospect of helping to build the firm. There, I obtained experience in subjects such as money and banking and international trade while continuing to work on public utility matters. I am eternally indebted to Dr. Brimmer for obtaining my Ph.D. Although his firm was small, he paid my salary for nearly two years while I worked primarily on my dissertation. It was immediately my dream to do the same for someone else. In fact, I have recently hired a Ph.D. candidate at Howard University as an intern, and he will be able to use his research at the Commission for his dissertation.

Upon completion of my degree, I wanted to develop in-depth knowledge and experience in one subject. I chose public utility regulation, after seeing an ad for the position of Director of the Office of Economics at the District of Columbia Public Service Commission in the Washington Post . The Chairperson, the Honorable Patricia M. Worthy , interviewed me for the position. I was immediately impressed not only with her striking appearance and stature, in my favorite business attire, a smartly tailored pantsuit, but most importantly by her keen intellect. She made me feel “right at home.” As I have worked with her over the ensuring years, my respect and admiration for her has only deepened. For me, she is the epitome of outstanding moral, ethical and professional standards in everything that she does. She has the courage of her convictions, no matter what the cost. Thus, she has become my role model for how I try to conduct myself.

Looking back over the last nearly 20 years, my work at the D.C. Public Service Commission has been professionally stimulating and rewarding. By working for an independent quasi-judicial agency, I have had the freedom to determine the positions I wanted to recommend, rather than having them prescribed for me. The environment has also been intellectually challenging, thanks to outstanding economists and other technical experts in the Commission, utility companies and representing other intervenors . In addition, I have been able to apply all of my economics tools, such as econometric methods, mathematical programming, and cost-benefit analysis on issues that directly impact most people's lives. I have testified before the Commission and served as a technical advisor.

[1] Barbara Bradfield , the sole survivor of the first clinical trial for HERCEPTIN, entitled her story on the newly created website for HERCEPTIN patients as “A Life Saved.”

[2] In composing this story, I have tried to address issues that breast cancer patients might be interested in or might identify with, based on comments and questions posted on a number of breast cancer survivor websites. If you have any questions or simply want to share stories or insights, I can be reached on my e-mail address above.

[3] Dr. Leffall is a former President of the American Cancer Society and currently Chairman-elect of the Susan B. Komen Foundation.

[4] Given the extensive monitoring, I fully expected to find any ensuing cancer at a very early stage. In hindsight, Tamoxifen would probably not have been helpful since the cancer was estrogen negative, not estrogen positive. Moreover, the cancer was not found in the right breast; it was in the left, where I had never had any biopsies, but had had frequent cyst aspirations. Finally, I don't regret the 1993 decision not to have the prophylactic mastectomies because the threat of cancer could not be eliminated since all of the breast tissue could not be removed. Thus, I could have still gotten the disease and, because of the reconstruction, not found the disease until it was truly too late.

[5] I had several hundred hours of sick leave and was able to get enough advanced leave so I never experienced a reduction in salary. I was also able to work part-time, from home, for part of this period.

[6] The radiation oncologist at Johns Hopkins were so impressed with my surgery that she asked if she could have other doctors on staff come and look at the work. She was especially intrigued with the surgery under my left arm.

[7]This treatment entails remove stem cells from the blood followed by the infusion of chemo so strong that it kills any cancer cells in the bone marrow. About ten days later, the stem cells are re-infused into the patient.

[8] I have recently discovered another side effect of the radiation treatments. I developed hives after my first dose of the bone-strengthening drug called Zometa . The bumps on my neck and chest where I had had the radiation treatments was especially painful, both in terms of stinging and itching sensations. It was the first time I noticed a difference in the skin sensitivity between that area and the rest of my body.

[9] It took some time to discover the blood clot. The first sign was the nurse's inability to draw blood through the port. I was immediately given a relatively new drug to break up the clot. That worked for about a month before the problem occurred again. This time, I woke up one morning to find a swollen neck. I was sent for Doppler studies, which located one of the clots. Finally, dye was injected in interventional radiology and another clot was found.

[10] This theory arises from a movie I saw many years ago, where a woman went to Nepal and India seeking a “cure” for her cancer. She was told to perform exercises periodically during the night to keep active since this would help boost her immune system to fight the cancer.

[11] In 1968, Uncle Buddy diagnosed me with hyperthyroidism when he say my hand shaking and took my pulse after I picked up a cup of tea while we sat at the kitchen table. In 1969, I had 80 percent of my thyroid removed. Hyperthyroidism returned in 1994, which I attribute to the onset of menopause, even though my endocrinologist doesn't believe that. I was then treated with a radioactive isotope, followed by daily doses of Synthoid to date.

[12] I have also been reluctant to hug someone or slow dance with a man, even my husband, for fear my “hard” breast implant would feel unnatural to the other person.

[13] Skin color is often a sensitive issue for Black people. Contrary to popular conceptions, I have always thought my light complexion contributed to my “ugly duckling” feelings. My mother and sister, rather than I, are considered the pretty ones in the family, and they are more “brown” than I. My skin coloring comes from my Dad, and even he chose, for his bride, a woman who was darker than he. Reaching dating age in the 60's, when Black became Beautiful, only heightened my insecurities.

[14] Although there is no history of breast cancer in my family, my Aunt “Mickey” died of breast cancer in 1967, after a six-year battle. However, she was married to my father's brother, so while she was certainly a member of the family, she was not in my bloodline. She was also the first person I ever saw deceased, and I still remember vividly her painful decline in health.

[15] The Spirit of GOD is active within me. It moves through my body, mind, and soul in a healing cleansing, purifying stream, removing all obstacles and leaving health, peace, and harmony.

[16] Author unknown.

[17] I have reprinted the poem at the end.

[18] I have a theory that the diamond necklace may have contributed to the breast cancer. I wore the neckalce while getting an open MRI for my pelvic area about six weeks before the diagnosis. The technician said I did not have to remove the jewelry, but I have always wondered whether I should have removed it. It hung near the area where the first lump was found.

[19] This incident reminds me of when a new beauty pageant queen was crowned last year. Breast cancer was her platform, and I think she said she had worked with breast cancer patients. She was asked whether she thought physicians should be frank in giving a patient bad news and she said yes. She won on that answer, but that answer was wrong, at least for me, and I wanted to jump through the television to tell her so. I strongly believe taking away a patient's hope can be a certain death sentence, and I have unfortunately witnessed such a reaction.

[20] I distribute my annual test results to my cardiologist, endocrinologist; gynecologist; plastic surgeon; general surgeon; dentist; ophthalmologist; dermatologist; radiation oncologist; family practitioner; ear nose, and throat specialist; naturopathic doctor; as well as to my uncle and a close family friend who is a nephrologist. Since I know they don't have time to conduct their own research on my treatments, I have also provided each of them with information that I obtained from the Internet on HERCEPTIN, Aredia, and other drugs I have taken.

[21] The Library of Congress call number is CS71.G443 1995.

[22] Because slavery depressed the wage market, most Northern states “freed” Blacks between 1780 and 1800. However, they subsequently passed laws restricting education and ownership of property by Blacks.