My Journey - From Cindy, a Survivor

My Journey with Ovarian Cancer -- A Very Personal "Long and Winding Road" by: Cynthia K. 

Please allow me to introduce myself. My name is Cynthia. I am, in many ways, an ordinary (47) year old woman. I am a wife and proud mother of five wonderful children, ages 6, 8, 10, 12, and 14 years old. I am also a daughter, a sister, an aunt, and a friend. What is not ordinary about me is that I am fighting an enemy.

Now please allow me to introduce my enemy, Ovarian Cancer. It is the most deadly and most misdiagnosed of all gynecologic cancers. Often, as in my case, patients are misdiagnosed and treated for Irritable Bowel Syndrome. This personally cost me a three month delay to a correct diagnosis, and thereby allowed my cancer to reach an advanced stage. Eighty percent of Americans, mostly women, will be diagnosed with IBS (whose symptoms closely mimic ovarian cancer) at some point in their lives. Approximately 23,000 new cases of ovarian cancer will be diagnosed in 2005, according to the American Cancer Society. Ovarian cancer causes more deaths than any other cancer of the female reproductive system with an estimated 16,210 deaths expected in 2005. It occurs in one out of (55) women at any age.

My journey to where I am today really begins in October, 2000 at which point I underwent my annual physical examinations by my gynecologist. My gynecologist's only remark at the time was that I looked "a little tired". She said there would be only one other test (the CA-125, tumor marker test for ovarian cancer) that she could run but that would be if she suspected cancer. Of course, we weren't suspecting cancer and I proceeded with my busy life of full time special education teacher and mother of my (5) children, at the time ages 1, 3, 4, 5, and 7. Who wouldn't be "tired"!

In December, 2000 I began to feel some pain on my lower right side. I immediately saw my primary care doctor and underwent a series of tests that yielded no answers. I asked about the possibility of cancer, still no CA-125 test was run. The pain in my side increased and in addition, I developed severe back pain, bloating, bleeding, and sheer exhaustion, all prominent warning signs of ovarian cancer. I was put on heavy pain medications, and each time I called my doctor (19 times in January, 2001), my pain meds were increased. It was all I could do to get up in the morning, go to work, and fall into bed as soon as my husband got home. I no longer had any energy for parenting or household duties.

Finally, in February, 2001 I was sent to a gastrointestinal specialist for GI testing. I underwent a series of tests and a colonoscopy that the doctor could not complete due to "too much swelling in the abdomen". No follow up for the swelling was planned, other than being told I had Irritable Bowel Syndrome (IBS) and should change my diet. I promptly changed my diet but my pain and symptoms continued to increase. I had severe loss of appetite yet had been rapidly gaining weight, by this time (30) pounds over a two month span (all fluid in my abdomen and around my lung cavity). Even so, none of the doctors I had seen took this as a concern. By the end of the month, I was told I could not get any more pain meds. I had been on too high a dose for too long. I felt as though none of my complaints were being taken seriously. I had to do something and began to fear for my life. I saw a new doctor, who suggested that my pain might be a mental health issue.

On March 5, 2001 the pain was so severe that I could barely make it to work. I was in complete emotional and physical distress. I left work early and checked into the emergency room at St. Luke's Hospital in Milwaukee. There, within 24 hours, my primary care doctor was sitting on the end of my bed and calmly telling me that she was now treating me for ovarian cancer. All I could think of was "Your're WHAT?! After all these tests?!" I was shocked, angry, and scared for myself, my family, and most of all my husband and children. By the end of the week I had over (5) liters of fluid drained from my body and major surgery done to reveal that my cancer was stage IV and my CA-125 was over 1200 (normal is less than 35, the exact number is different for every woman.) Along with my advanced diagnosis, came a grim prognosis. I was told that I had a five percent chance of survival to the five year mark. I have since learned that I do not have to succumb to being a "statistic".

Next, the treatments began. Over the course of the past five years, I have endured a total of (24) cycles of chemotherapy, a stem cell transplant (Loyola University Medical Center - Chicago) that took me away from home for (2 1/2) months, and several surgeries, three in California. As a result of my treatment, I am profoundly deaf in my left ear and have a significant loss in my right ear. I also have partial numbness in my feet, wrists, and hands. In addition, my platelet and white blood cell count is low. Also, my family has incurred insurmountable debt related to my extensive medical treatment and a fund has been set up by friends to help us meet the high cost of fighting this cancer.

In the past few years, I have made and lost many dear friends to ovarian cancer. Our diagnosis bonded us and many of these women were young mothers of small children. We shared the same hopes and fears. We literally held hands through our struggles and treatments and worked hard to keep each other lifted up. And one more VERY IMPORTANT thing we shared: WE WERE ALL MISDIAGNOSED WITH IBS and lost precious time for early diagnosis and proper treatment.Out of this group of wonderful women (there were 6 of us), I am the lone survivor and am compelled to tell the story and spread a warning to other women who might be in for a misdiagnosis of this devastating disease. I have made a promise to each one of my friends to keep fighting, never give up and spread the word about our experience...and I know they are watching over me from above as I attempt to do just that. 

Since finishing my most recent chemotherapy cycles this past May, my CA-125 has hovered around (8) or (9) what I consider to be my baseline. MY last reoccurrence was caught early. My CA-125 was only 22 but for me, that was too far above my baseline. I have my CA-125 test done every 30 days. With my diagnosis, waiting (3) or (6) months between testing could prove to be a fatal mistake. I also remember to thank God every day for the privilege of this life. My family and I have learned to not take anything for granted. This life is a gift and it is not a given. We are here for a reason and have to make the most of every day that we have. I want to encourage every woman to take an active role in her medical care. Ask questions and be persistent about getting answers. Take the time to listen to your body and know your personal baseline CA-125 level. It could save you life. 

Cindy has written about what she has learned about CA-125 test in another piece. Please visit: ivysplace.org stories section to view.