My name is Pat. My story includes my mother, younger sister, and myself. My journey with cancer began in February 2005 with my personal diagnosis in July 2005 at the age of 46 at Stage II. I am divorced with 3 boys. My youngest was a senior in high school at the time. I am employed in the Radiology Department of a small rural hospital in Iowa as an ultrasonographer. I have 30 plus years of experience in medicine. Before my diagnosis I enjoyed many outdoor activities, especially team sports. Now, I just enjoy my acreage - working outside and raising many different animals.
One of my most feared phone calls was one from a close relative telling me that they had cancer. In February 2005, my mother called to tell me that her routine mammogram had indicated an area of concern and she was going to have a biopsy with possible lumpectomy because it was very suspicious for cancer. Working in a radiology department, I had some knowledge of breast cancer and knew that if they were planning a lumpectomy, her cancer was very possibly confined to the breast. I was worried but, not overwhelmed. She proceeded with the lumpectomy and subsequently underwent radiation but, did not proceed with any chemotherapy. She is currently in good health and a recent exam was normal.
One week, almost to the day, I received my second phone call, this time from my sister, Connie. She called to tell me that she had ovarian cancer. I was devastated. My initial thought was that she was dying and where would her son go. He was still in high school. I had very limited knowledge of ovarian cancer and feared the worst. Connie had been having symptoms for 8-9 months, abdominal pain, bloating, and constipation. She returned to her physician multiple occasions only to be treated for spastic colon and irritable bowel syndrome. One of the problems was that she had had to change primary care physicians due to change in employment. They didn't know her as well so, treated her to the best of their knowledge. When her abdomen continued to swell and was getting no relief from any treatments, she phoned her childhood physician. Growing up in a small town definitely has it's advantages. After describing her symptoms to him, he knew immediately that she probably had ovarian cancer and needed a CT scan. She phoned her primary care physician's office and insisted on having one done. They agreed and scheduled one for the next week. Connie, not being a patient person, called the hospital and was able to get her CT the next day. Her CT confirmed that she had cancer - probably primary ovarian. She had multiple tumors including "speckling" of small tumors on her diaphragm and ascites (fluid in the abdominal cavity). She was referred to Iowa City and proceeded with surgery and diagnosed Stage lllC. She was started on Carboplatin and Taxol and often had to postpone her chemo due to the many adverse reactions it causes, especially depleting her white blood cell count. Connie did not tolerate the chemo very well and was often too sick to work or take care of her household. Her last round of chemo was in September 2005. By Christmas she had a nice head of hair again.
My personal experience was prompted by my sister's diagnosis. Because she was seven years younger than me, I went to my physician and asked to at least have a transvaginal ultrasound done. She agreed and I had my ultrasound and CA 125 done the next day. Because of my knowledge of ultrasound, I knew there were some abnormalities on my ultrasound while I watched the screen but, didn't think anything of it since my view was limited. The Radiologist viewed my exam and told me what he saw. I had cysts on both ovaries and a questionable small area within my left ovary. I was then referred to a gynecologic oncologist who had to argue with my insurance company to perform a complete hysterectomy (uterus and ovaries). They wanted her to just remove my ovaries and if they indicated cancer, she could then proceed with the hysterectomy. After many conversations, we were able to proceed with the doctor's recommendation. I was diagnosed Stage ll in July 2005. I had a tumor of each ovary and cancer cells in my abdominal fluid. I began chemo approximately three weeks later - Carboplatin and Taxol. I tolerated the chemo much better than my sister. I was able to work almost the entire time. Working in a small hospital, I had a lot of extended support. My son was a Senior in high school. He made losing my hair a "fun" experience. He shaved different shapes in my hair before finally shaving it all off. His football team all signed a scarf for me to wear to the games. I bought a green wig to wear to the games and even painted my head for Homecoming. Yes, I was sick and extremely tired the entire time but had the help of family and friends, especially friends - remember my mother and sister were also going through treatment at the time. I only had to postpone my very last chemo due to a depleted white blood cell count. My last chemo was November 18, 2005. I passed my last check up with flying colors.
In March of 2006 after much discussion, the three of us decided to proceed with genetic testing starting with my mother. By May, we had the results which were positive for BRCA 1. Connie and I decided to also proceed, knowing that with our history that we would be positive also, which we were. Now, what do we do with the results? Unfortunately, in May 2006 we had to change our focus once again. Connie began to have symptoms again in late April. She chose to ignore them and not share them. Finally in May, she told me about her symptoms, asking my opinion on whether to reschedule her June appointment for a date sooner. I, of course, told her yes she should and that Mom and I would go with her. She was diagnosed with a reoccurrence the end of May 2006 just 8 months after her last chemo. She went back on chemo but, was told that they couldn't use the carboplatin/taxol combination so, Doxil, and Topetecan were used. The chemo was not affective this time around. She developed ascites (fluid in the abdominal cavity) to the point that she had to have it drained every 10-14 days. The chemo made her so ill, she was not able to take care of her household on her own. I began going up to her home (she lived about 90 miles away) on Friday night after work, took care of her all weekend and then back home on Sunday night. This went on for several weeks. Knowing that death was imminent, we made out a will and power of attorney and funeral arrangements. In early December, she was no longer able to care for herself. She moved in with Mom on Sunday night. I started going up on Thursday night and staying until Sunday so, I could take her back to her own home. December 23, Connie felt the end was near. I took FMLA from work and went to her side. She wanted to stay at home to die. I took care of her needs with help from Hospice. Christmas morning was the last time that she spoke. She passed away on December 29, 2006 with Mom and I by her side.
Connie was one of the most selfless people I have ever known. Even when she wasn't able to physically do much for herself, she was always available to anyone that needed to share their difficulties. As an MSW, she was a counselor to many. I miss her every day of my life. I consider myself the lucky one. Connie saved my life and in return, I was able to grant her wish and take care of her at home. Before Connie got extremely ill, I had made the decision to have prophylactic bilateral mastectomies due to my BRCA 1 and ovarian cancer. The experts told me that I had a 70% chance of developing breast cancer. Those odds were way too high for me. So, in September 2006 with my mother and sister by my side, I had the surgery. I have never regretted my decision.
I often asked, "Why me?". The one thing this experience has taught is that life is to short. I have moved out of the "fast" lane and slowed down. I live for myself today and live each day as if it might be my last. I have my "Bucket List" and began checking them off about 1½ years ago.
The message I have for ALL women is:: YOU ARE YOUR OWN BEST ADVOCATE. LISTEN TO YOUR BODY. DON'T LET THE DOCTORS OR INSURANCE COMPANIES PLAY WITH YOUR HEALTH. BREAK THE SILENCE!!!!!!