My story begins like that of so many other women I have met with ovarian cancer. My symptoms probably began in about 2002. At that time, I started having problems with my period, fatigue, bloating etc., but was told that it was typical for someone my age (50) and signaled the start of menopause. I continued having regular checkups with my PCP, and was told that all this was “normal”. Throughout the fall of 2004, these symptoms continued to get worse and worse. I would sometimes go months without a period, and then it would return heavily for up to a month.
By December of 2004, the fatigue was so intense I actually remember arriving at work one morning (I have taught elementary school for 32 years) and sitting in my car crying because I just didn’t think I could make the walk up to the second floor to my classroom. Again I went to my doctor and she thought I must be having anxiety or stress and suggested an anti-depressant and to rest up over Christmas vacation. Finally, I was so sick and tired of being sick and tired, my husband took me to the emergency room.
There, after many tests, they found that my blood levels were so low from the loss of blood that I was so anemic that it had actually affected the amount of blood available for my heart to pump. I received blood transfusions, and was sent home with iron and told again to rest. Every type of test was scheduled to determine what had caused this low blood level. Colonoscopy, endoscope, you name it, I had it (with the notable exception of a CA125, transvaginal ultrasound or CAT scan.)
At every appointment with every type of specialist, I went through the symptoms I’d been experiencing, and repeatedly suggested a hysterectomy, since I clearly had no intention of having more children. Every test showed nothing out of the ordinary. My PCP sent me to yet one more gynecologist. After really listening to my story, he asked me if I’d ever considered having a hysterectomy, since I’d had so many ongoing problems. I was so glad-I wanted to kiss him!
I was thrilled to finally have an end to the vague problems I'd been going through. Pelvic exam and a transvaginal ultrasound prior to surgery showed all would be routine. I entered the hospital at 7:30 am on May 23 and woke up in a dark room at about 8:00 pm. The doctor came in and told me I had stage IIIA ovarian cancer. I was stunned-I'd never heard of ovarian cancer, except I vaguely remembered Gilda Radner had died from it. I looked at the doctor and just said "Cancer, cancer"? He nodded. I replied, "Like lose your hair and die cancer"? He nodded again.
That night was my initiation into the club no woman ever wants to belong to. I began a journey down a path that still continues. After my surgery I went home to face my new life in “cancerworld”. But there were more surprises in store for me.
During my last few days in the hospital, I’d had my first experience with terrific heartburn. The nurses assured me it was probably as a result of the pain medications I was receiving. They tried Nexium; it gave me a rash and itching. So I went home Friday, and promptly had my husband running to the store for Tums or anything that would help. Nothing did. Saturday, I sent him back with specific instructions to ask the pharmacist what was the strongest over the counter medicine for heartburn. She remembered my “heart incident” from the anemia and called me at home to make sure my heartburn couldn’t be a heart attack. I thanked her, explained everything that had happened in the previous week, and assured her it was just heartburn. She sent Aaron home with more over the counter remedies.
By Monday (Memorial Day) the pain was so severe, I knew it wasn’t heartburn. My son and husband rushed me to the emergency room once again. It was a heart attack! Tuesday I had an angiogram and Wednesday had cardiac catheterization to install 3 stents in my heart due to blocked arteries. Five days later, home again to heal and prepare for chemo!
I initially completed 6 rounds of chemo with a carboplatin/taxol cocktail every three weeks. I then opted to do 12 monthly maintenance chemo doses of taxol only. I have lost all my hair, eyebrows and eyelashes, dealt with nausea and incredible fatigue, but consider myself one or the luckier women I've met. I have been able to continue to teach and have found wonderful support and love from my family, friends, coworkers and "my kids." I have learned to appreciate the grace and joy of the simple things in life, and really to believe the adage" don't sweat the small stuff" and finally realized it really is mostly all small stuff.
The awareness movement that has brought so much information and knowledge to the world about breast cancer now needs to be brought to bear to share with the world about OVCA. The symptoms are vague and common (bloating, fatigue etc.) which is why it often diagnosed too late to be cured. As one doctor told me "if all women knew the symptoms my waiting room would be filled with middle aged women". The motto of the National Ovarian Cancer Coalition on our teal jelly bracelets is "it whispers, so listen". Women need to listen and speak up about our bodies! Then let's hope waiting rooms would be filled and lives would be saved earlier. Our lives, the lives of my "sisters" fighting this disease daily and the lives of our undiagnosed sisters and daughters depend on this.
~Nancy Tufts 9-18-07