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VNA of Care New England
VNA of Care New England

In Her Own Words: Living With Ovarian Cancer

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The Wednesday between her daughter's college graduation and her son's high school graduation, Jan was diagnosed with ovarian cancer. A rough ride on a horse, an assertive family doctor, and Jan's awareness of her symptoms led to an early diagnosis that has allowed Jan to live the past seven years of her life cancer free. She has beaten the 80% odds that she would not survive beyond two years. "I told myself that I had as much of a chance to be in the odds of those that survive as those that don't survive. You have to have hope!"
What was your first sign that something was wrong? What symptoms did you experience?
Starting in December of 1993, when I laid down at night, my stomach felt puffy. I just thought I was getting fat, but it was unusual for me because I never really had that problem before. Then, I was always exhausted, and I was typically a person who never got tired. The third thing was that I had pain on the right side (near the right ovary) when I had intercourse.
What was the diagnosis experience like?
My doctor thought I was pre-menopausal, but I knew there was more to it than that. So I thought I would go back to the doctor in six months. A few months later, I was riding a horse that bucked a lot, which led to a great deal of pain. So I went to my family physician and told him I thought I was having an appendicitis. He connected my pain with the other symptoms I had earlier, and that led to the diagnosis by him in a very quick manner that I had ovarian cancer.
Most doctors don't run tests for ovarian cancer, but he in fact, did use them. He did a trans-vaginal ultra sound and a CA 125 blood test. I was in so much pain that they admitted me to the hospital. We later discovered that the tumor had flipped upside down while I was riding the horse, and that's what caused the severe pain. By the next day, he had run all the tests and had called my family in to give us the news that I had ovarian cancer.
What was your initial and then longer-term reaction to the diagnosis?
My initial reaction (to myself) was that I would be dead in two years. I didn't know anyone that survived ovarian cancer. It was a shock because I had always been a very healthy person. I exercise a lot; try to eat the right foods; cancer doesn't run in my family. I just thought, "How can this be?"
The worst part of a cancer diagnosis is initially hearing that you have it. Then, you start to realize you have a huge challenge in front of you. I started thinking about who was the best doctor to treat ovarian cancer. So we started making a bunch of phone calls, and decided on the same doctor that my family doctor recommended. I didn't have a lot of time to do much research, because I was in so much pain. Once we decided on the doctor, we scheduled the surgery to be done in three days.
How is your ovarian cancer treated?
I had a complete hysterectomy (removal of the uterus) and an oophorectomy (removal of the ovaries). Then, one week later, I started chemotherapy. I had six treatments, three weeks apart. Each infusion treatment would take about eight hours. I was more afraid of the chemotherapy than of dying. Fortunately, I never got sick from the chemotherapy. I didn't feel wonderful for a few days right after, but I never got sick. I did lose my hair. I lost the hair on my head, my eyebrows, and the hair on my arms. That really bothered me. I was diagnosed in May, and had my last chemo treatment in November. I also had problems with constipation and some problems with my veins.
Every six months I have a blood test, and have my annual physical exam with my family doctor.
Did you have to make any lifestyle or dietary changes in response to having ovarian cancer?
The hysterectomy instantly threw me into menopause, so I had to learn to deal with waking up at night soaking wet. While I was going through treatment, it required a lot of slowing down. That was really hard for me. I wasn't able to exercise for several weeks after surgery to allow healing. The chemotherapy destroys growth cells and makes healing more difficult. It took a lot longer to recover than I was prepared for. Most people with ovarian cancer have an ongoing battle with treatment, but I was fortunate to not deal with that.
The dietary changes I've made are due to the constipation. I have a lot of scar tissue due to the surgery and chemotherapy, so I have to be sure that I eat lots of fiber, fruits, and vegetables to keep things functioning properly.
Did you seek any type of emotional support?
I think it's very important for anyone who has been diagnosed with a devastating illness to have emotional support. My husband was always there for me. I would tell others I was doing fine, because I knew I had my husband to tell how I was really feeling. One day I just told him I felt like crap! I knew I could always be honest with him, and not have to bring everybody else down. I needed to let my emotions out to someone. I would tell Dan, "I hate how I feel. I hate losing my hair. I hate what's going on." You need to let those emotions out.
My faith in God was also a great emotional support. Knowing that I was secure in my eternity and that God was in control. It was a great time for me to grow as a Christian.
I didn't end up going to a support group, but there were excellent ones in my community. I just had overwhelming support from friends, family, and neighbors. There were meals, calls, flowers, and cards. After each chemotherapy treatment, someone was always there to take over house and family stuff so I could just rest. I had a neighbor who would always bring me chicken noodle soup. It was one of the few things that tasted good to me.
Does ovarian cancer have any impact on your family?
My son really thought I was going to die. He kind of withdrew from me. He wanted to be supportive, but it was really difficult for him. My daughter was more into the "What can I do to help you?" mode. We tried to keep things as positive as possible with the kids.
The initial impact on my husband was fear. He played a huge protector role that I had never seen him in before or after. He wanted to take me away from all the stress. I didn't work one day during the time I was getting treatment. Even though I really thought I wanted to go back to work. It was the first time in 30 years of marriage that he did all the cleaning, cooking, and all the laundry. I think the job he assumed was that he would make me get better.
What advice would you give to anyone living with ovarian cancer?
The first thing you have to get a hold of is hope. You are not a statistic. Be secure in Jeremiah 29:11, which says, "I know the plans I have for you, says the Lord. They are plans for good and not for evil."
Secondly, arm yourself with education before you let anyone treat you, and learn everything you can about that particular kind of cancer. Make sure you are working with a specialist in that particular kind of cancer. It can be the difference between life and death. Treatment is changing fast so keep up to date on your options. Be sure you're getting the most current and recommended treatment.
Thirdly, keep a sense of humor. Look at the things that are happening around you and see the things that are funny about them. If you don't, you'll be miserable.
Fourthly, accept the gift of family and friends. People want to feel like they can do something for you. Enjoy the moment-it's a blessing during the time of stress.
And lastly, rely on your faith. God has given us so many good words of encouragement, hope, and promise. Take that time and use it to grow in your faith. It can be a very peaceful time in your life.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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