Susan O.

Diagnosis: Ovarian cancer, Dec. 8, 1994
Treatment: Removal of ovarian cyst and complete hysterectomy

Diagnosis: Metastasis to small intestine, Sept. 6, 1996
Treatment: Surgical removal of 10 inches of small intestine, chemotherapy, stem cell bone marrow transplant

Profession: Retired, volunteer at church, support others with cancer

This all started with a routine checkup with my gynecologist. For many years I had a cyst on my ovary, but it had changed in size. My doctor recommended I have a pelvic ultrasound. Receiving the results a week later, he was concerned because of the irregularities in the blood flow through the cyst, and suggested I have a hysterectomy. On Dec. 8, 1994, surgery was performed. There was a malignancy encapsulated in the cyst on my ovary. During surgery the cyst burst, causing spillage, and therefore I was referred to Dr. Arlan Fuller, director of Gynecologic Oncology at Mass. General Hospital. My first appointment was Dec. 20, 1994.

I was 22 years old when my mother died in 1969 of ovarian cancer at the age of 53. Ironically, she died on the 20th of December, the day I was about to learn what would happen to me. I decided not to tell anyone I had cancer until after my appointment. My son, Michael, was 17 at the time, and Karen was 15. My husband, Kevin, and I wanted to know what was going to transpire before anyone else heard the news. I did not want to upset them. Telling my children was the most difficult task in my life. But they understood where I was coming from, since my mother had died from this disease. We have often talked about it.

For whatever reason, I always felt from the beginning that I would be OK. I have a lot of faith. When we were driving to the hospital for the hysterectomy it had been raining but just before we arrived there was a beautiful rainbow. I knew then everything would be alright. I have God and my mother. She's there on my shoulder, all the time. The doctors didn't agree on my type of tumor. They said category 3 or 2, but they knew it was very aggressive. Dr. Fuller scheduled a CT-scan followed later by a laparoscopy to biopsy various organs, which were all showing clear. Dr. Fuller said I had a choice: I could start with traditional chemotherapy or choose to wait and continue to be monitored, having blood work and a CT-scan every three months, and then every six months. I felt since all tests had been negative that I would be fine if I was continually checked. I can honestly say I don't dwell on "what if I'd had chemotherapy then." I didn't worry after I made the decision. I moved on with my life. At the time, I returned to work for the telephone company as an operator. Then at my six-month checkup in September 1997, my CA 125 blood test had elevated, so I knew something was going on. I had another CT-scan and Dr. Fuller said he needed to do another laparoscopy and take more biopsies. It had gone into my small intestine. So the doctor removed about 10 inches of small intestine and that's when Dr. Michael Seiden took charge of my chemotherapy. It was a shock to me because I felt so healthy. I started chemotherapy right away with Taxol and Carboplatin. I was doing OK with this. I was concerned, but I still felt I was going to be alright. I felt better knowing treatments were available to me than my mother had years previously. Of course death is always in the back of your mind but I would just focus on one day and remember that every day is a gift from God. I know your attitude and spirit have so much to do with being able to handle this. High-dose chemotherapy and the possibility of being qualified for a bone marrow transplant were my next concerns. There was no question in my mind. I was going to do it. To extend your life by giving up a few weeks or months is worth it. Unfortunately, this is not all my family was dealing with. My son had been through a major crisis just before all this happened.

Kevin: When Michael was 15 he was diagnosed with an arterial venal malformation in his spinal cord, a birth defect we never knew he had. His growth spurt as a teenager activated it, causing two aneurysms and as a result, he was paralyzed from the waist down. Today he walks with a cane and uses a wheelchair for strenuous things. And recently I was very ill and in critical care for nine days with internal bleeding and a minor heart attack. Still, we never feel or question why us! Even when Michael was going through his ordeal, we said, "This is the way the cards have been dealt. We can't change it and it's not going to go away. We need to accept it and move on." We are dealing. We're a very close family.

Susan: Now the quality of my life has totally changed. The things that were major before cancer are minor now. I think you have to experience this disease to comprehend this. Well, Kevin understands. He has been with me at every doctor appointment. I have a good friend who I met during treatment. She went through a bone marrow transplant at the same time I did. I didn't go to a support group. My family, friends and church were my supporters. I tolerated the chemotherapy before the bone marrow transplant very well. Zofran, an anti-nausea drug, was my key to everything. It was a miracle drug. Usually I don't tolerate any kinds of drugs well. The hardest part was the Neupogen shot, the drug that gets your bone marrow cells ready to be harvested. After the 10th day of my daily injection, I had excruciating back pain. I would scream and vomit from the pain, but I kept saying, "It's OK, it's working." I knew I was going to have the bone marrow transplant and I was going to be OK. Looking back, I think of the transplant as tolerable, even though I was very sick from the high-dose chemotherapy that I had three days in a row. I was vomiting for nine or 10 days, and I lost 20 pounds. At one point when I was having the transplant, my head felt like pins and needles. They thought I might be having a stroke. They wrapped me up like a mummy to take me for a CT-scan. At home, Kevin had just woken up and it was the middle of the night.

Kevin: I was feeling something.

Susan: I phoned him and said, "Kevin, it's fine. I'm OK." They felt it might be a sinus problem or some other unknown cause. It was a scare. People were so kind. A lot of them donated platelets and blood for me, even my priest who'd never before given blood. He said it was an honor to do it for me. Every day someone brought a meal or something I needed. I told my children I wanted them to continue with their normal lives. Karen was in her senior year. My goal was to see her high school graduation. I don't know how I would have gotten through this without the wonderful medical people - doctors and nurses. I truly feel God has led us in this direction, to these doctors. Today I'm doing well. I sometimes talk with people who are considering bone marrow transplant. I just feel that if I can be of any kind of help or support, I will. Then I focus on one day at a time. It's faith, believing and the power of prayer. Life is back to normal. I am living a regular life. There is something in me that keeps saying, "I want to do more to help others." This has been a journey, part of my life. People say, "You've been through so much," but I don't look at it that way. If you dwell on it, you are losing your quality of life. The key to all of it is the love and support of the people around you. I often go to the quote, "I am not afraid of tomorrow. I have seen yesterday. And I love today."