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My silent enemy Ovarian cancer, cloaked in confusing symptoms, shatters a robust life Tuesday, August 21, 2001 By Betsy Kline, Post-Gazette Staff Writer
Ovarian cancer: it whispers, so listen.
Soon you're going to hear more about this "silent" cancer. Both Gov. Tom Ridge and Mayor Tom Murphy have issued proclamations declaring September ovarian cancer awareness month. But even louder will be the clarion call of hundreds of women, survivors of this deadly disease.
On Sept. 9, they and their loved ones will gather in North Park for the first local Walk for the Whisper to raise awareness of this "whispering" cancer, so called because its symptoms are nonspecific, making it difficult to detect until the disease has progressed to its more deadly stages.
The American Cancer Society estimates 23,400 women will be diagnosed with ovarian cancer this year; 13,900 will die. The overall five-year survival rate is between 35 percent and 47 percent; a dismal 15 to 20 percent for women in the advanced stages of the disease; 90 percent for women whose disease is detected in the earliest stages. Unfortunately; 70 percent of diagnosed cases will already be in the advanced stages.
One year ago, I was blind-sided by a diagnosis of stage IIIc ovarian cancer, one step away from the almost always terminal stage IV. A 15-hour surgery and four months of intensive chemotherapy left me physically devastated and mentally stunned: How had the disease progressed so far without detection? As I struggled to get back on my feet, I chipped away at the mystery of how my doctors and I -- and numerous diagnostic tests -- missed or misread the warning signals.
What I learned was that a woman needs to listen to her body and educate herself to the risks of all the gynecological perils that stand between her and a long, healthy life.
Benign indifference
No one really knows when a cell goes bad and starts sabotaging a healthy body or why it happens.
In mid-March 1999, I had my annual gynecological exam. It was routine except that I had a new gynecologist. Her thoroughness impressed me. At the end of the pelvic exam, she commented on my fibroids. News to me. She ordered an ultrasound to establish a baseline in case they grew troublesome. Fibroids are masses of cells that can grow inside or outside the uterus. They are almost always benign, but can cause discomfort depending on their size and position on the uterus. One in every four women over the age of 35 will experience them; many will never know they even have them.
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The pelvic ultrasound showed scattered masses of different sizes. Nothing to worry about, the radiologist said.
So I didn't.
Life went blissfully on. I was 47 years old and enjoying robust health despite minor arthritic aches. A former runner, I worked out religiously at my neighborhood gym trying to keep my joints flexible and my weight in check. With the help of a personal trainer, I was getting into shape for a strenuous hiking trip. The five-day trek over the high-altitude desert of southwestern Utah in October 1999 was a high point of my life. It proved that I still had my runner's endurance. I would need it soon -- more than I ever could have guessed.
First signs of trouble
I was going strong into November when the latest in a series of watch-and-see skin biopsies indicated early-stage non-Hodgkin's lymphoma.
The lymphoma was an unusual, but nonaggressive type. I would undergo an infusion therapy of Rituxan, a monoclonal antibody manufactured from mouse cell protein targeted specifically at that type of lymphoma.
The week before Christmas, the abdominal discomfort started. A twinge here, a sharp pain there, but mostly of short duration. I had been working out vigorously at the gym trying to sublimate my anxiety over the lymphoma, so I figured I'd overdone it. I swore off ab work for a week.
The Mighty Mouse Protein, as one friend amusingly called it, worked like a charm. The treatments at the UPMC Cancer Institute weren't fun -- nobody likes sitting around with an IV in her arm for hours on end, week after week -- but I tolerated the therapy well. The lumps receded.
I should have been happy, but the pain in my gut became more persistent. More troubling, I had a sharp, clenching pain every time I urinated. I went back to my gynecologist in mid January. I underwent another transvaginal ultrasound. One of the "fibroids" had grown, I was told, but not enough to warrant surgery. My ovaries looked "normal."
But the pain became more persistent and more diffuse. Then constipation set in. The urination pain became excruciating.
No more mind games
By April, the pain was wearing me down. It interfered with my sleep; I would be sitting at my desk and stabbing pains would make me almost gasp aloud. I was bloated. Yuck. I gulped the prescription-strength naproxen sodium my gyne had given me for the pain. My usually high energy level was dragging.
In late May, I again went to my gynecologist. She agreed "something else was going on down there" and she referred me to a gynecological surgeon for a second opinion on a hysterectomy.
But just two days later the pain jolted me awake in the middle of the night. It felt like my insides were trying to crawl out my navel. Weak and frightened, I went to see my primary-care physician. One listen with his stethoscope and he admitted me directly to UPMC Shadyside for more tests.
On the second sleepless day, my husband, Bill, and I were told that a CT scan showed shadows on my liver. With the hysterectomy in the offing, it was suggested a "detour" be made to check out my liver. My test results were forwarded to the Cancer Institute.
The second gynecologist's pre-surgical pelvic exam revealed a grapefruit-sized mass. Name a date, I pleaded, and let's get on with this.
Out, out damn ovaries
A hysterectomy was scheduled at Magee-Womens Hospital on June 26, the day after my 48th birthday. Then came the call from the Cancer Institute. I was given a date and time to see yet another doctor. Now what?, I wondered.
Dr. Joshua T. Rubin didn't waste time on niceties. He performed yet another pelvic exam. He ordered still more tests. He was blunt: I had ovarian cancer, which probably had already spread. Just how far was difficult to tell. He talked about exploratory surgery, but I heard only a fraction of what he said. I was stunned. And then I was alone. While Rubin's assistant went to book the surgery, I sat on the examining table and cried. This can't be happening. Two cancer diagnoses in one year? I thought of my Aunt Mary, who had died of ovarian cancer at 39.
The missing part of the puzzle was a blood test called a CA-125, which detects the presence of proteins shed by some cancer cells. Until I met Dr. Rubin I didn't even know such a test existed. By itself, it is not a foolproof indicator of ovarian cancer, but in conjunction with ultrasounds and pelvic exams, it can nail a diagnosis. A "normal" or acceptable CA-125 reading is anything under 38; mine was topping out at 2,300.
While I was sleeping
In the days leading to my surgery, I still believed that once my reproductive tract was history I could resume my life. Bed rest might be fun. I stockpiled books.
We reported to Presby at 5 a.m. on June 29, 2000. Less than nine months before I had climbed rocky peaks in Utah; now I needed help climbing onto a gurney. After a farewell kiss, I was off to pre-op. The last thing I remember was two anesthesiologists checking my ID bracelet and telling me to relax.
Bill and I joke now that the next 15 hours were harder on him than they were on me. While I was sleeping, he had to receive the news from Dr. Rubin and then convey it to our anxious families: The cancer had spread throughout my abdomen.
Reading Dr. Rubin's three-page synopsis of the surgery that saved my life, I get the eerie feeling that I'm reading my own autopsy report. He describes a pelvis that was "basically frozen" with tumor. Dense deposits of tumor had eaten my colon. It had invaded my bladder and abdominal wall and it covered my peritoneum -- the membrane that lines the abdominal cavity and cradles the internal organs -- up to my diaphragm, stopping short of my lungs. A small nodule of tumor had invaded my liver.
After draining 2 1/2 liters of fluid from my swollen belly, the surgeons performed a total hysterectomy, removed most of my colon, resected the rectum, rebuilt my bladder wall, resected the liver, rerouted my small intestine through the abdominal wall for an ileostomy, and "debulked" the diffuse tumor. Oh yes, there were fibroids, but they were "insignificant."
Later, an elated Rubin reported to my husband that 99 percent of the tumor had been removed. A strong heart and runner's lungs had helped me through my most critical marathon but the surgeons were the ones with tired feet. All those 5 a.m. trips to the gym had paid off.
The aftermath
I barely remember the next two days in the intensive care unit, lost as I was in a fog of pain and morphine.
Pain was the biggest issue. The nurses encouraged me to use my PCA -- patient-controlled analgesic -- pump often to administer controlled doses of morphine to keep the pain levels tolerable. IVs connected me to numerous bags of fluid -- my only hydration and sustenance. I became aware of the catheter "down there." And I started to gag on the gastro-nasal tube snaked down the back of my throat to drain residual fluids.
It wasn't until day three that I mustered the courage to peek under my gown and survey the landscape of my "new" body. A huge wad of gauze covered an 11-inch gash from breastbone to pubic bone. Just to the right of that, a plastic pouch was suckered to my belly. It was filled with dark fluid. This was my ileostomy, my new plumbing for solid waste elimination. The awesome devastation of my disease finally sank in.
I allowed myself one afternoon to wallow in depression. Poor Bill. I told him to close the door and go home. I cried as I pumped the morphine as often as it would let me. Then I fell asleep, exhausted.
I woke up from that too-short drugged sleep to a July sun blazing outside the hospital window and a gorgeous bouquet of flowers from my brother-in-law and his wife. I thought of my garden at home and all the family celebrations to come. I was ready to do whatever I had to do to be healthy again, and I knew I'd need help.
I left the hospital 11 days after surgery. Because I was too weak to manage the stairs at our Point Breeze home, I moved into my mother's Oakland condo, where I was fed, fussed over and tucked in at night. The post-surgical complications were relatively minor, but for meltdown hot flashes -- a reminder that I had undergone instant menopause.
I had lost nearly 30 pounds; for the first time in my life I had thin thighs, but I couldn't stand long enough to admire them in a mirror. One of the strangest sensations of all: my insides were so hollow that I could feel my innards sloshing around when I rolled over in bed. It would be months before new connective tissue formed.
Chemo and beyond
I wish I could say I got better every day, but there was still that 1 percent of tumor that had to be addressed. Five weeks after surgery, I started chemotherapy at the Cancer Institute.
Chemo is poison. It kills rapidly reproducing cells, both malignant and healthy. After two weeks I was completely bald. Every three weeks for four months I would spend 6 to 8 hours hooked up to an infusion pump, getting a stiff dose of cell-slaying magic. After each treatment, it would take longer to regain my strength. My veins began to collapse, making it difficult for even the most seasoned chemo nurses to start my IVs The fatigue was deadening. I shuffled like a zombie. Just when I felt as if I was coming up for air, it was time for another round.
My last chemo, appropriately, was Thanksgiving week. Not wanting to treat my family to the sound of my retching in the bathroom, Bill and I sat out the familial feast and celebrated with frozen turkey dinners at home.
Epilogue
Dodging death works wonders on one's life attitudes. Every day reveals new blessings; nothing is taken for granted.
It is as though life has started over. The first post-surgical shower. The first glimpse of home. The first walk in the garden. The first night sleeping in my husband's arms. The first meal (pasta) I could stand up long enough to prepare. The first glimpse of the ocean on a much-needed vacation.
I always knew I had wonderful family, friends and co-workers, but the outpouring of love and support never ceased to astonish me. Gifts of companionship, books, videos, food and flowers arrived continually at our doorstep. The mail was flooded with cards and letters for months.
It gave me the strength to keep my eyes on the prize of reclaimed health. By November, before the final chemo, I was back to work part time, thanks to a generous sick leave policy. By January, I resumed my gym workouts. To celebrate an April CA-125 reading of 18, I expanded my work schedule to full time.
Fourteen months after my life turned upside down, I'm healthy, healing and thrilled to be joining the Walk for the Whisper, proudly wearing the teal ribbon of survivorship.
I would be lying if I painted a too rosy picture. There are still low-energy days and dark periods of "why me?" moodiness. Every cough or sneeze is painful because of my ravaged diaphragm. The ileostomy is a daily reminder of the sea change my body has endured. And I live with the knowledge that ovarian cancers often recur. That's why I'll always be listening for the whisper.
Betsy Kline is a Post-Gazette copy editor and paginator. She can be reached at bkline@post-gazette.com.
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