"My Breast Cancer Story Part II" I had reservations for our annual family vacation. Dr. Trekell felt comfortable granting me the additional time, but cautioned me on not delaying any further. The vacation was not as relaxing as it had been in past years, but it was a good time to allow us to have some quality time as a family. The next few months were bound to be a strain. I came back rested and ready to face my destiny. My mother-in-law accompanied us home to Tennessee from Boston. She kindly offered her assistance while I was undergoing surgery. I was grateful to her. We had always been close. It was something my own mother would have done if she had been alive. I couldn't have wanted a better substitute. I entered the hospital a few days after our return home. Dr. Trekell explained that the axcillary dissection was a small cut in the armpit. A sampling of lymph nodes would be removed and tested for disease. After removal my lymphatic system would be compromised. I would have to have a drain installed for the first few days postop to drain any accumulated lymph fluid. In the future that left arm could not be used for blood pressure reading or blood work. I would have to be very careful of even minor cuts. I would not have the lymphatic's to fight infection in that arm. I was to do the Reach to Recovery exercises to preserve function in my arm. I was put to sleep for this procedure. I woke in recovery with excruciating pain in my left arm as the blood pressure cuff inflated on it. Someone must have forgot to inform the nurse. It was immediately removed to the other arm. The pain unfortunately was there to stay. I was discharged from Same Day Surgery almost as soon as I woke up. I was surprised to find my husband beside me. I had some experience with surgery before this and had always had to call him at the office when I awoke. This time he never left my side. It was a slow painful week before I returned to Dr. Trekell for a post-op visit. I was stunned when she gave me the news that I had two out of eight nodes positive. "I really did not expect this. With a 5mm tumor, there is only a three percent chance of positive nodes." she said. "I thing you better stop quoting statistics to me. I keep beating the odds." "This will mean chemotherapy on top of radiation. I am afraid. This is no longer local, it is systemic. Let's set up a conference for next week when you are stronger and we will discuss the options." she said. I insisted we stop on the way home and bought "The Breast Book" by Dr. Susan Love, the leading breast cancer authority in the country. Paul introduced me to the internet, where I found an inexhaustible wealth of information. I discovered the Breast Cancer message board on American Online, an immediate source of endless support by fellow breast cancer patients and survivors. I buried myself in research. Knowledge is power, it enabled me to be an active participant in my own health cancer, in the fight for my life. I went through the conference. No, mastectomy was still not a necessity. Research indicated lumpectomies were equally successful in long term survival. I was referred to an oncologist and a radiation oncologist. There was some question about the priority being given to radiation follow-up or chemotherapy. Both were considered equally important. My lupus-like connective tissue disorder also presented its own set of complications. Finally, it was decided by my oncologist, Dr. Cowan would get first shot at me. A course of three doses of CMF (cytoxin, methotrexate, and 5 fluorouracil). The chemotherapy would be administered in the doctor's office in three week cycles. Then Dr. Petty would get me for six weeks of radiation treatments followed my two weeks of booster radiation to the sight of the tumor. Dr. Cowan would then complete my chemotherapy with three more rounds of CMF. I did not have all the debilitating effects of chemo. My hair thinned but did not all fall out. Luckily I had plenty to spare. I suffered minor malaise for a few days, but nausea was easily managed with a wonderful drug called Zofran. My Sjogren's was actually helped by the chemo, a treatment used in very severe cases of lupus. Most of the worst trouble I had was with the radiation. One of the characteristics of Sjogren's is inability to tolerate the ultraviolet rays of the sun. The radiation treatments exacerbated my fatigue and caused more severe burning of the breast than is typical. It was expected with my history and unavoidable. I had retained my breast and therefore radiation was of utmost importance. It was a painful Christmas for me. The burns intensified and got infected. Luckily I had planned for this eventuality and got most of my Christmas preparation out of the way. My husband prepared dinner. It was the quietest and least festive Christmas we had ever had, but yet very poignant. The kids were happy with their loot. Paul and I were happy the worst of the radiation was behind me. My oldest daughter left the day after Christmas for New Orleans to perform with her cheerleading squad in the half time show of the Sugar Bowl. I had planned on accompanying her as a chaperone, but was too debilitated by the radiation treatments. It was very disappointing to me not to be able to share one of the most exciting moments of her life. I had been there for everything my children did. The New Year brought my last three chemo treatments. I was in the middle of receiving 5000 cases of Girl Scout cookies for our annual Girl Scout cookie sale, working with other committee people. As manager of the county I took a hands on approach and was right there in the middle of things. We took a break for lunch. When I returned home, there was an Express delivery from UPS wedged in my front door. There was nothing on the outside to give me a clue as to the sender. I opened the envelop to find a letter from the Atlanta Committee for the Olympic Games (ACOG). I had been nominated by my Girl Scout peers for the honor of carrying the Olympic Torch in the 1996 Torch Relay as a Community Hero. I had wanted to get tickets to the games. Living three hours north of Atlanta it seemed an opportunity not to be passed up. Unfortunately the cost for a family of five was prohibitive. Yet here I was going to be able to be a part of the Olympics after all. I was ecstatic. I had always led an ordinary life. I had always wanted to do something extraordinary. This was my chance. I was worried about my stamina, which was not good. The torch was coming through Knoxville in late June. Hopefully by then, my cancer experience would be behind me. I had one more treatment of chemo, then Dr. Cowan put me on tamoxifen, an anti estrogen hormone treatment to help insure I would not have a recurrence. As a premenapausal woman my estrogen level was quite high and could encourage the growth of new cancer. I would be on tamoxifen for at least five years. Theory is continually changing on how long to keep women on tamoxifen. Some even think forever. We were going to start with five years. I was told to expect hot flashes and secession of menstruation. I have gotten neither. I actually feel energized since I have been on it. It was a good position to be in as the Olympic Torch approached Knoxville. I was so excited. My community was excited as well. The local paper had a front page story on me. "Reach" by Gloria Estefan became my theme song. Finally a week before my scheduled "run" I got a banner for my family to hold marking my place along the route as well as confirmation of the day and time was scheduled for 7:02am to 7:04am. We had to report at 5:30am, an unheard of hour for me. I am well known for my ability to sleep in. I was to be runner number 62017. Day sixty-two, runner seventeen. I felt this was a good omen. Seventeen was my birthday as well as my daughter's softball number and my husband's racecar number. The day before my turn, the torch came to Knoxville, carried into the World's Fair Park by Pat Head Summitt, head coach of the University of Tennessee Lady basketball team and a former Olympian herself, both as a player and a coach. I watched it all on television. I had thought to maybe attend the ceremonies, but had thrown out my back the day before. I was worried about even being up to the task in the morning. I slept little and woke early. The entire family was up and out before the sun rose. They stayed with me where we assembled at Grayson BMW, one of the official sponsors of the Olympics. Finally, it was time to board the shuttle bus. Paul and the kids took my banner to await me at me relay site. I waited with about ten other torchbearers. The volunteers organizing the relay were still enthusiastic and excited after 62 days as we were. The anticipation was high as we were each handed our torch for the first time. The torch was a three and a half pound, thirty-two inch cylinder, comprised of twenty-two aluminum flutes representing each of the cities hosting the modern Olympics. The name of each and the year were also engraved on one of the two gold bands embracing the flutes. We boarded the shuttle and settled back for the short ride. Each person would get dropped off in order. I was the only Community Hero there. One woman won her spot on a radio show. Others were local representatives of the corporate sponsors for the Olympics. Two were high school track team members chosen to be escort runner. I was the second one dropped off. There was my family waiting with cameras and smiles at the ready. Some friends and Girl Scout representatives were there as well as my next door neighbors. Not too much time past before we saw the entourage approach. There were twelve vehicles and one hundred and fifty volunteers in the entourage, lead by a Georgia State Trooper. A motorcyclist came ahead and turned a knob at the bottom of my torch. He handed it back to me. "Enjoy your moment!" he said. I had to position myself in front of a motor home dripping with journalists and photographers. Claresse Hobbs of Kingsport, TN. approached me. We touched our torches high. She hugged me and it was all mine. What an indescribable feeling to hold the teak handle of a torch, the torch bearing the flame originating in Ancient Greece, traveling in our country from Los Angeles. I was carrying a small piece of history. It was exhilarating, awesome. I had come through the worst experience of my life to this point in time. I was an ordinary person doing something extraordinary. I proudly represented Girl Scouts and breast cancer survivors. I was not allowed to wear any logos on my official uniform of white T-shirts and shorts. But I did cheat a little. I wore on my wrist a watch with the Girl Scout emblem, a gift from my Council. I wore pinned to my shirt, a good luck clover pin given to me by a dear friend, Fran, when I was diagnosed. With my parents both deceased I also carried in my sock, a mass card for my father, and wore my mother's engagement ring. My family ran alongside me as I walked (not ran) with my escort runner Sara Robinette from Roane County, Tennessee. My turn was over before I knew it. A brief half mile. I saw before me Bob from Atlanta, he willing to fly anywhere to have this opportunity. I had come a long way from my roots in Massachusetts to my new home in Tennessee. I had married a wonderful man and had three children I am enormously proud of. I had made a contribution to Girl Scouts whose rewards I was now garnering. I had suffered trials and tribulation, more than some, not as many as others. I am a survivor of breast cancer. I have a potentially serious chronic illness which is now in remission. I was a part of the centennial Olympics. I savored the moment as I reached high and passed the flame to Bob. I was whisked back on the shuttle and watched as others after me carried the flame. I watched as Mohammed Ali took my flame and lit the caldron to open the Atlanta games. I listened as Celine Dion sang the song specifically written for the Olympics. One sentence held me. "There's nothing ordinary in the living of each day." I had my moment. I savored my moment. I am grateful to be alive. I traveled a great distance that year. It was a year of extremes, good and bad. I no longer take life for granted. I don't sweat the small stuff. I don't know what the future holds for me, but I do know there was a rainbow at the end of my tunnel. In the years since my June 1995 diagnosis, I have suffered more of life's ups and downs. Each doctor's visit is a cause of sometimes severe anxiety - will they find something; is the cancer back. In March of 1997, those fears were realized. As a result of my use of Tamoxifen, a hormone therapy used to discourage the return of cancer or perhaps cancer in the other breast, my GYN insisted on annual uterine biopsies. There is a rare incidence of uterine cancer developing among tamoxifen users. Once again I found myself on the wrong side of the statistics. One year after using tamoxifen, the biopsy report came back with endometetrial hyperplasia, a precancerous condition that my GYN assured me would progress to uterine cancer if left untreated. She prescribed Provera, a progesterone based hormone. While Provera is the standard treatment for endometrial hyperplasia, to arrest the development of cancer, it is contraindicated for breast cancer patients. Luckily I was informed, and knew better not to take it. Thus began my effort to educate my doctor and my insurance company. Removal of the ovaries is sometimes used as a prevention for recurrence, thereby cutting off the supply of estrogen, which is known to stimulate the development of breast cancer. Since my uterus was now compromised by the tamoxifen, I wanted a hysterectomy. My surgeon and oncologist were both in favor of this course because it was preferable to remain on tamoxifen. I was 42 years old with all the children I intended to have, it was a no brainer. Unfortunately my GYN was a GYN. She saw my condition as a straight GYN issue and was reluctance to do a hysterectomy until, and if, it developed into cancer. Finally, under pressure and the threat to find another doctor who would do the procedure, she relented. Then began a three week fight with my insurance company to approve the procedure. They declined approval. I appealed. They declined again. Some desk jockey with an MD, who never sees live patients, determined this was medically unnecessary. Affidavits from my team of physicians did not sway the professional opinion of this board certified GYN, who was unwilling to look past the GYN issue to the fact that I was, first, a breast cancer. As a breast cancer patient, my proposed course of treatment was more than reasonable. The bureaucracy finally wore me down. I went to the pharmacy for the stupid Provera. I would fill the Rx and through the pills away. Fortunately, I frequented a small pharmacy. Don Walker came around the counter and said, "Do you know what you are doing? You can't take Provera. It's contraindicated for breast cancer patients." I read him chapter and verse of my insurance saga. He said, "It's your insurance company's computer that red flagged this prescription." I was dumbfounded. I asked for a printout from his computer and raced home to renew my battle with my insurance company. As soon as I mentioned the pharmacy connection with their computer, threw in a lawsuit threat for good measure, I was approved for the hysterectomy within the hour. I still face recurrent fears about the status of my health, But I have managed to keep the beast at bay. All of this has not only changed the course of my life, but that of my family. During a recent quest for a job change, my husband's foremost thought was our health insurance. Some of the more important events of my children's life has been overshadowed by the focus on my illness. When a mother is ill, their whole world is upset. With the desire for a job change, my husband and I made the decision to return to our native Massachusetts. We had battled my illnesses virtually alone, with a little help from our friends. I needed to go home. I am now seven years cancer-free. I now have access to some of the top physicians and hospitals in the world. I know I am in a good place, if the cancer should rear it's ugly head. Despite my trials, I have been blessed. I have been married to my best friend for 23 years. I have three wonderful children. I have family surrounding me, and friends who I treasure. For more information about Bonnie, visit her website at http://www.pinkribbon.com/
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