I can remember exactly where I was when I received “the call’, as I now refer to it, from my sister Anita. Hearing her shaky voice, I knew immediately something was very wrong.  She had not been feeling well when we talked several days prior. Nothing serious we thought then, but complaining of unusual symptoms of bloating and a feeling of fullness as well as a strange pinching in her pelvic area. However, as a mother of two, a full-time teacher, active in her community and church, I assumed she was just doing too much. Anita was never ill. But now she also mentioned a loss of appetite and extreme fatigue. As an oncology nurse, a sense of dread began to overwhelm me. I didn’t need to hear any more – these are the classic symptoms of Ovarian Cancer. Putting my fears aside, I hoped her symptoms could be explained by other causes.  I was relieved to hear she was scheduled for her routine gynecological exam in a few days. The wait seemed interminable. The diagnosis of Ovarian Cancer was confirmed several weeks later after a pelvic exam, transvaginal ultrasound and blood tests including the CA-125. (A CA-125 test is the one analysis which if elevated can confirm the diagnosis of ovarian cancer). Events moved so rapidly that we barely had time to consider the enormity of both this diagnosis as well as the long journey before us.

Surgery was scheduled several days later and was performed at the University of Rochester Hospital near her home in upstate New York.  We were encouraged to learn the surgeon would be using the da Vinci robotic procedure which allows the surgeon to visualize the diseased area ten times better than normal vision. This robotic-assisted device matches the doctor’s hand movements precisely, and more importantly, the surgery would be less invasive and provide Anita a shorter recovery period.

Although we were confident in this state of the art technology to remove the tumor, I realized there was still so much more to be considered: lymph node involvement and distant metastases (spreading beyond the ovaries) were determinants to the all-important staging of her disease.  We learned several days later Anita would be diagnosed with Stage IIIa ovarian cancer, meaning the disease had spread to the lymph nodes and beyond her ovaries. My fears were again realized, and now without question, this would be life-changing and Immediately set Anita and her loved ones on a long journey.  Anita’s life would never be the same again, with years of chemotherapy, scans, surgery, blood tests and many doctors’ visit. We were devasted but our family was determined to be encouraging, supportive, and hopeful. Though we had no idea of the future, we all knew, as did Anita, there was a long and difficult road ahead.

As her sister I wanted her to immediately begin with her initial treatments, so as not to waste any time. As a nurse, however,  I knew the importance of getting a second and even a third opinion, as this is equally important in obtaining the best oncology team she could find. Anita was determined to continue to work and teach which would keep her close to home. She sought out, received and considered second and third opinions which did confirm very aggressive chemotherapy treatments. Anita experienced all the usual debilitating side-effects of chemotherapy, including hair loss, nausea, vomiting, constipation, diarrhea, fatigue, and mouth sores.  Despite the aggressive nature of these treatments and her reactions to them, she rarely missed a day of teaching….

As we were living hundreds of miles apart throughout Anita’s treatments we developed an unusually long distance telephone conversation called, “What were your numbers?”,  a routine familiar to all oncology patients. Her blood counts, i.e. her white blood cells, red blood cells, platelets, hemoglobin, and others, were all predictors of whether she could physically tolerate her treatments.  When her “numbers” went too low she would need to miss her chemo treatment to allow her bone marrow time to recover and replenish, thus bringing her blood counts nearer to normal. Having to miss a treatment was particularly disappointing believing her chemotherapy, as ill as it made her, was “her life-line”. Anita endured many fluctuations of her numbers with many of her chemotherapies, immunotherapies, and targeted therapies.  The singular, most important value to Anita was her CA-125 which measured her tumor mass. Unfortunately, this number stubbornly rose throughout her many years of treatments.

There were many relapses when her chemotherapy treatments became less effective and other therapies needed to be introduced.  New trial drugs, immunotherapies, and targeted therapies were also tried without any long term success. There were also clinical trials in which Anita participated, with trips to the NIH in Washington DC, Brigham, and Women in Boston, Roswell Park in Buffalo, Sloan Kettering in NYC, and other disparate journeys to find some new drug or clinical trial. Anita simply never lost hope.  You could find her on her computer in the early hours of the morning both looking for new clinical trials as well as grading her student exams.

Throughout all her treatments over the years she continued to live her life the way she wanted. She continued to work as an elementary reading teacher surrounded by her young students, whom she loved. During the seven years of her battle with cancer and despite the side effects of her chemotherapy treatments, she also continued to work with her church developing her own charity when she recognized a need in her community to help provide meals for those needing them.  Anita, at her own expense, began ‘Second Sunday’ for her parish. She would make a large Italian dinner of pasta and meatballs, one Sunday a month in the church kitchen to help her community, which continues today in the Gleaners Community Kitchen of St. John’s Church. You also could always find Anita working among her gardens which gave her so much peace and enjoyment. She loved to walk with friends and spend time near her beautiful Lake Canandaigua. However, when Anita, her family, and all of us accepted that there weren’t any options left, she had wanted one last trip to visit Long Island, NY, where she was born and raised. I am forever grateful and will always cherish and remember that visit, as it gave us – Anita, Louise and I,  a perfect day at the beach together and a wonderful dinner with our large family. It was just what she wanted and we will be forever in her debt for giving us that memory.

In the end, we believe she fought her battle with cancer on her terms, as best she could and living up to her middle name – never giving up hope.  A patient once told me “ You beat cancer by the way you live ” Anita in her own way was able to conquer her battle with cancer by living well and enjoying her life even to her last days and months.  This was exactly the way she wanted to live without fear of treatments and chemotherapy but always surrounded by all family and friends whom she loved. She never wanted to be defined by her cancer. She was so much more, as her journey was dedicated to and filled with her family, her students, her church and charity. Always living, true to her name, in hope.