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My Story | Julie Elizabeth S., Montana, USA

Ovarian cancer (serous cystadenocarcinoma in both ovaries and omentum), diagnosed in 1989 at age 28

Radical hysterectomy, bilateral salpingo-oophorectomy, omentectomy, appendectomy

Journey to Survival

My name is Julie Elizabeth. I have survived ovarian cancer since 1989. No one I have ever known had ever had it -- not any of my family, friends, or co-workers. To the best of my knowledge, I am the first and only one in my family to have contracted ovarian cancer. I was twenty-eight years of age at the time. To receive a diagnosis of ovarian cancer at any age, especially as young as I was, is rare. To survive it, is rarer still. I am healthy now, but the memories of fighting for my life still haunt me.

I was a new employee, working in a Chicago factory at the time. As is common with most women who have/had ovarian cancer, my symptoms were extremely vague. No big red flags suggesting the dreaded "C" word were there. And at that time, having known nothing about ovarian cancer (except that Gilda Radner had died of it six months prior to my diagnosis), I attributed my symptoms to other, more common ailments. I was experiencing a nagging, ever-increasing fatigue that no amount of sleep seemed to help. I thought perhaps that the cause of it was my new job, which was physically taxing. I had been having what I thought were very uncomfortable episodes of "bad gas" and other vague abdominal discomforts that I attributed to nondescript gastrointestinal problems. Also, I bled twice between two menstrual cycles, something I'd never done before. My mother actually had suggested this might be early onset menopause (!), but I almost dismissed the idea since I was only 28. But, what if she were right?

When I saw the family doctor, he ordered lower-abdominal/pelvic area sonograms, the results of which revealed two large cysts - one attached to each ovary. Also, he discovered my uterus was tilted, and wanted to correct its position to enable me to have children. My doctor compared the sizes of the cysts to fruit: one was the size of a grapefruit, the other, an orange. Also, in comparing them to a pregnancy, he stated they were comparable to a four-month fetus in their combined size and weight. He told me these types of cysts are normally benign -- in and of themselves harmless - but that as they grow, they would take up massive amounts of space in my abdominal cavity and begin squeezing and pushing against vital organs. This could pose a serious threat to my life. If my organs were to get twisted and tangled around the cysts (a very real and scary possibility), the cysts could strangle them, cutting off blood supply and my organs' ability to function. My doctor advised surgery to remove the cysts and to reposition my tilted uterus and scheduled it for the following Wednesday. He gave me no indication that it could become an emergency situation.

On Monday, I woke up with severe pain in my abdomen - it was also distended and somewhat hard. I got dressed (whenever I look back on this experience, I can't believe I did this) and walked the three blocks from my house to the factory to work anyway. I figured it would just go away on its own, like the other times it had occurred. About 11:30 am, the pain got so bad I had to stop working, call my family, and have someone pick me up and drive me home. This time it was different -- worse than before, and I was really frightened. My stepdad arrived at the factory to take me home. It felt like an eternity waiting for him to show up. The only standing position I could be remotely comfortable in was a bent-over stoop - it was just too painful to stand straight, and no one offered me a chair to sit in while I waited. By the time I got home, I could only lay on my back, with my knees pulled up. Laying my legs flat made the pain completely intolerable. My mother called our family doctor who told her to take me to the emergency room believing my problem was being caused by one of my cysts twisting. By 7:30 that night, after a blur of endless hours of pre-op preparations and tests, I was in the operating room about to have the first surgery of my life. I was so scared, but had no energy to even experience the physical aspects of fright.

I awoke the next morning overwhelmed with extreme pain, grogginess, and an unexpected rush of raw, uncensored emotions. It may seem irrational, but my very first thought upon awakening was, "How dare they - how dare they invade me like that! I've been cut open and things were done inside of me! It hurts, and I'm not the same anymore. Why me??" I felt surgically raped, and nothing and no one could console me for hours. I wanted SO much to scream but was just too weak - all I could manage was a little moan that only served to frustrate and upset me even more. It wasn't until I was fully out of the anesthetic that my logical and rational cognitive processes returned, and I realized that the surgery was an emergency procedure to remove one of the cysts. It had indeed twisted, creating immense pressure in my abdomen, and it may have been in this twisted position for some time. When it moved in one direction or another, I felt extreme discomfort and pressure. I discovered also that peritonitis was the cause of the unbearable pain and distention of my abdomen.

On the second day, I was removed from ICU (intensive care unit) and taken to a regular room. It was then that my doctor told me the whole story of what had been going on inside of me. Not only did I have the two cysts, a tilted uterus, and peritonitis to contend with, but he suspected ovarian cancer as well. The right cyst (which was the one that twisted, and ruptured too, I later found out), and the ovary it was attached to were sent off to be biopsied. My family and I waited four agonizing days for the results, during which my life felt as if it was balancing on a tightrope. When the results were returned, they showed both the cyst and the ovary to be positive for ovarian cancer - serous cystadenocarcinoma. The cancer of the ovary was well contained, but my doctor was worried about the ruptured cyst. He thought it might be cancerous too, and there was cause to be concerned about the spread of cancer to other areas of my body.

So, early the next morning, my doctor cut me open again, through the same incision as the first, and did a second surgery. This time, though, considerably more would be done. While the first surgery lasted about two and a half hours, this second surgery took more than three. My doctor performed a laundry list of procedures: radical hysterectomy, bilateral oophorectomy, appendectomy, and omentectomy because a metastasized tumor was found in the omentum. Not surprisingly, the follow-up biopsy results from this surgery showed cancer of the left ovary (well-contained) and left cyst as well.

Prior to the second surgery, I remember asking if my eggs could be saved, and was told there were no more eggs left because the cancer had destroyed them all. I was still a virgin at the time, and this news devastated me, coming on top of the shock of the cancer and everything else that had gone wrong with me physically. Even my employer added to my misery by calling me while I was in my hospital bed to tell me I no longer had a job.

I was in hospital for 14 days, most of which spent recovering in ICU. I remember long hours there, looking out the windows at the dreary October rainfall, thinking how the endless drops of water resembled the tears I was crying.

My recovery at home, though no chemotherapy was given, was a yearlong process of the deepest depression I'd ever known. Though my mother visited me daily during my hospital stay, when I returned home I became aware I would never be able to talk to her or anyone else in my family about my experience. My family's need for me to "get over it" within their time frame - not mine - made me feel like a nuisance, and only added to the painful process. I wanted so much to learn more about ovarian cancer - it was the enemy in a battle that nearly cost me my life - but my mother thought I was being morbid when I expressed any curiosity about the disease. Having been born in 1929, she was of the "old school." She expected me to be stoic and put it behind me as quickly as possible. But I couldn't.

Ovarian cancer, like a tornado, tore through my life, destroying my ovaries and leaving me no hope of conceiving or bearing children the natural way. I had lost all of my reproductive organs, my job, my boyfriend, and even my sense of feeling like a woman. In the aftermath, I somehow had to figure out how to put the pieces of my life back together alone, even as I recovered at home, surrounded by family. Consequently, I buried the pain as deeply as I could, and tried, in vain, to keep it covered. Over the years, though, it took its toll on me - emotionally and physically. It was exhausting to keep up my "I'm OK" front, and it began eventually to wear me down. I learned the hard way that deep and painful feelings from a traumatic experience cannot be buried indefinitely. Just as sneaky and insidious as the ovarian cancer, was the grief and pain that followed - seeping its way into every aspect of my life. Nothing looked, felt, smelled, or tasted the same anymore. My life was not the same anymore. My experience was horrific and no matter how hard I tried, there was no escaping that. I desperately needed to reach out - to find others like me with whom I could share my story.

I am grateful to God for life, and though there were times during my experience when I had truly wished the cancer could have finished me off, I am happy to be alive now. The fear that ovarian cancer could return is a constant concern for me, even now, and yet I have hope that I can look forward to many more years of life.

November 2003

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