Dorothy W.

Diagnosis: Leiomyosarcoma of the uterus, Stage 4, Dec. 28, 1995
Treatment: Hysterectomy, appendectomy, bowel resection, chemotherapy

Diagnosis: Recurrence of Leiomyosarcoma on the right lung, June 1998
Treatment: Lung resection

Diagnosis: Recurrence of Leiomyosarcoma on the left lung, August 1998
Treatment: Five cycles of Cisplatin chemotherapy, Letrozole

Profession: Judicial Assistant for a Senior Circuit Judge, U.S. Court of Appeals, First Circuit

I first noticed discomfort two weeks prior to the surgery. I was experiencing pain on my right side that was severe at times but did not interfere with my daily routine but concerned me enough to see my physician, Dr. Steven Gardner. A CT-scan and ultrasound were ordered, as well as an appointment with my gynecologist, Dr. Masha Etkin. I had a rapidly growing fibroid tumor, so it was decided the best approach was to have a complete hysterectomy. There was some discussion of it possibly being malignant since my CA-125, a blood test, was slightly elevated. If so, then another gyn-surgeon, Dr. Najmosama Nikrui, would take the helm.

The surgery was scheduled for December 28th, 1995. My husband, Billy, and I left the doctor's office concerned and frightened but certain the tumor would be benign. My family prayed for me. My surgery was more complex than anticipated and was done by Dr. Nikrui. Billy was the first to hear that it was malignant and he had the horrendous job of informing my parents and our family. Ironically the disease was now a part of my family's life even before I knew I had cancer.

At 11 p.m. Billy was able to see me. He said to Dr. Nikrui, "I do not want her to be told anything tonight," but she said, "If she asks we must tell her the truth or she will never trust you or me." I didn't ask. At 8 a.m. the next morning Billy was by my side and I asked, "Is everything all right?" He started to cry. "Oh, my God, how can I have cancer, I'm healthy," I said. "What are we going to do?" Dr. Nikrui was also by early to explain the extensiveness of the surgery and her plan. After the pathology reports were back we would decide on a proper course of treatment.

Within two weeks of surgery I was having my first chemotherapy treatment, Adriamycin and Ifosfomide. I believed the chemo would save me. I thought I was prepared but when my hair fell out and the fatigue set in I knew I was in a battle and would need the prayers and support of those around me. My parents were terrified that they were going to lose their only child. The disease temporarily controlled our lives but everyone was there for me: family, friends, Dr. Niki, the Ellison nurses, Marie Elena, my social worker and God.

In April 1996, I read about the North Shore Cancer Center and their annual 6.2 mile walk to raise money for their cancer center and decided to walk as part of my battle plan. In June Billy, Jeanne, my stepdaughter, my sisters-in-law Liz and Sue and I walked and collected $600. Despite the chemo, I found the walk empowering and energizing even though I was in tears throughout most of the walk. To see thousands of people walking because they too had cancer invade their lives was an overwhelming experience. I made a commitment then that I would form a team and be back each year. (This past June Team Dorothy had 60 walkers and raised $16,200!)

My treatments were over in August. Life would be "normal" again. But in March 1997 my father was diagnosed with lung cancer and died May 31st. Again, cancer controlled us. It was a struggle emotionally and spiritually for all of us but we maintained our commitment and walked in June, Father's Day, in memory of Dad. Again, I cried throughout the walk.

In June 1998 we found a spot on my right lung and Dr. John Wain performed lungresection surgery. I had metastases to the lung. I was more frightened than before because the cancer outsmarted the chemotherapy and went to the lung, a prime site. I asked Dr. Nikrui if I was in trouble. We already knew how rare Leiomyosarcoma is and the level of uncertainty with protocols, but she explained to Billy and me that her treatment plans are aggressive while maintaining a good quality of life for me.

Within two months of the surgery another spot was discovered on my left lung. Surgery was not an option. All I wanted to do was pull the covers up over my head and hide but I did not have time for that. I once again donned the battle gear and began chemotherapy, Cisplatin. This time there was no hair loss; instead there was nausea and neuropathy. Neuropathy affects the nerves in the peripheral appendages. It began with tingling in my fingers and toes and has progressed to numbness in my hands, feet and legs. It is rather debilitating but I view it as an inconvenience. I have my life.

In March of 1999 I began taking an oral drug, Letrozole, because more spots were appearing in both lungs and we all wanted to hold off on more lung surgery. In October there was no sign of disease! Why is that? My mind and heart tell me it is a combination of my faith in God, my doctors, science, and the love of my family and friends. I begin and end each day saying, "Thank you, God." I understand that my situation can once again take an ugly turn but I am full of hope.

For now I am well and enjoying life. In 1996 I had a goal to celebrate the Millennium, which I did. My goal for now is to enjoy my family and friends and to continue with my commitment to the North Shore Cancer Walk so we may all see the day when this disease can be stopped.

Life is good!