Paula's Testimony

I was 38 years old when I discovered a lump on each breast. After close follow-up, the one on the right went away, but the one on the left had grown. The doctor said I was very young, had done everything "right" and he would stake his reputation that the lump would be benign, but a biopsy was needed for diagnosis. The biopsy took place on a Wednesday and I was to get my results the following Monday. In my mind I thought no news over the weekend was good news, but come Monday, I was told that the tumor was malignant and very aggressive.

I opted for a modified radical mastectomy. All I could think about was that I wanted to live and that I wanted this cancer out of my body. The procedure took place on September 9, 1984. Of the 20 lymph nodes taken, five were cancerous. I had chemotherapy for nine months following surgery.

In November of 1990 a routine chest x-ray revealed a one centimeter nodule on the back of the left lung. The upper lobe of my left lung was removed and they found that my breast cancer had metastasized to my lung, but this time the lymph nodes were "clean."

Because the cancer had spread, my best hope for a cure was with an autologous bone marrow transplant. I was told it would be a difficult procedure. As I was trying to come to terms with having this procedure, my insurance company refused to pay for it because of its experimental status. I perceived their attitude as "it will cost $150,000 and you'll probably not make it anyway." After several phone calls and letters, I became so depressed that I was ready to cancel everything. I told my son to give my "harvested" bone marrow to someone else.

The next morning as I awoke I thought "Who the hell are they to tell me whether I could live or die?" It's my life and my body they were talking about and if people don't have these investigational procedures, treatments will never improve! I went in and told my doctor I was going to fight and he was going with me.

An attorney took the case on a contingency. In July 1991, while still in litigation, I started my procedure. I received very high doses of chemotherapy to kill any hidden cancer cells in my body, followed by the return of my previously frozen bone marrow cells. I spent five weeks in the hospital - four of those in isolation. I became very ill, my skin turned dark, lost my hair and had temporary hearing loss. My family, friends and co-workers supported me emotionally while my insurance company delayed, but finally payed after two years. After a six month recuperation, I was back to work and felt great.

For five years I did great and continued on with my active life, including active membership in the American Cancer Society. In July 1996, a routine chest x-ray again showed one large mass on the left lung as well as several other spots in both lungs. Radiation was not an option. I was asked if I would participate in a "study" with a new drug. So, I started another regimen of chemotherapy to prepare me for another procedure called a stem cell transplant. This is similar to the transplant I had undergone previously, but the bone marrow was obtained from a catheter in my vein rather than from my hip bones. I lost my hair for the third time. It was just beginning to grow back when I went in to the hospital for the stem cell transplant.

About two weeks before being admitted for this procedure, the insurance company again called me at work to say they would not pay for the procedure. I was told that I was the first person to request a second transplant for breast cancer. I said, "that was five years ago and I am still alive today - that must mean something!" I thought, "here we go again" and I remarked, "Do I have to sue you people again?" I became very upset and I started to cry. I didn't think I had the strength this time to fight. The next day, I got on the phone and made several phone calls and threats. This time it only took one-and-a-half weeks to be approved for the procedure. But, I should not have had to fight the insurance company while I was fighting for my life. Neither should anyone else. Since my first transplant, there has been proposed legislation that would prohibit insurance companies from denying stem cell transplant to women for the treatment of breast cancer.

Along with fighting for my life on a daily basis and struggling with the insurance company, my husband deserted me. He had promised to stay with me through my illness and work on our marriage. I rarely saw him while I was in the hospital and he later abandoned me for another woman. But against all these odds, I will continue to strive for life. For I have much to live for. I know that the good Lord has put me on this earth for a good reason.

I know there is no known cure for metastatic breast cancer, so I am thankful for every birthday. I am grateful for my three children and five grandkids. They bring such joy and happiness that I truly feel fulfilled and alive!

I did lose my hair for the forth time and had some other side-effects, but this last time I was only in the hospital four weeks due to the many medical advances over the past five years. I feel stronger and better every day.

I know that I will win the war against cancer one battle at a time. We must all have faith and believe in ourselves. I continue to use my experiences and the strength I've gained to advocate for others with cancer. I remain active as the president of the Inland Valley Unit of the American Cancer Society. Through the Society we offer support groups and work to pass legislation in California and the nation to continue our battle against cancer. Advances in research have prolonged my life and we must continue to allow all cancer patients access to promising new treatments when needed.