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My Story | Betsy K., Pennsylvania, USA

Non-Hodgkin's lymphoma, November 1999 at 47
Monoclonal antibody therapy

Ovarian cancer, Stage 3c, June 2000 at 48
Complete hysterectomy, colectomy, resection of liver and rectum, rebuilding of bladder wall, removal of peritoneum of upper abdominal cavity/diaphragm, extensive tumor debulking, chemotherapy

This is a more detailed version of Betsy's story, "My Silent Enemy" which ran in the Pittsburgh Post-Gazette on August 21, 2001.

Ovarian cancer: It whispers, so listen.

But how was I to know what to listen for? That question still haunts me. Fourteen months ago, I was blindsided by a diagnosis of Stage 3c ovarian cancer. 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 - 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 healthy life. This cautionary tale is for men, too, because in cases of genetically predisposed ovarian cancer, they can be carriers of the gene mutation that may later affect their daughters and granddaughters, not just their mothers, wives and sisters.

This story has no beginning because who ever really knows when a cell goes bad and starts sabotaging a healthy body? And who knows if the cancer was genetic, the random act of a rogue cell, or an environmental mutation?

In mid March of 1999, I had my annual gynecological exam. It was routine except for the fact that I had a new gynecologist, my former doctor having retired. The new doctor's thoroughness impressed me. At the end of the pelvic exam, she commented on my fibroids. News to me. Because there was no mention of fibroids on my chart to date, she ordered an ultrasound to establish a baseline in case they grew troublesome.

Fibroids, for the uninitiated, are masses of cells that can grow inside or outside the uterus. Fibroids are almost always benign (only 0.02 percent become cancerous), but for the discomfort they can cause 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.

The following month, I followed up with a pelvic ultrasound and a mammogram, just for good measure. The radiologist said the fibroids were scattered and of different sizes, but nothing to worry about. So I didn't worry.

At least not about that. I had other distractions. After several trips to the dermatologist prompted by puzzling reddish lumps on my left arm, and several inconclusive biopsies, I was referred to a skin cancer specialist, and then an oncologist. Still more tests came back labeled "lymphocytic infiltrate." I was monitored periodically.

Life went blissfully on. I was then 47 years old and enjoying robust health despite minor arthritic aches. A former runner until knee problems sidelined me, I worked out religiously at my neighborhood gym trying to keep my joints flexible and my weight in check while I indulged in my other passion, food.

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 of 1999 turned out to be 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.

I was going strong into November when the latest skin biopsy indicated early-stage non-Hodgkin's lymphoma. So it was back to the Cancer Institute for a bone marrow biopsy. Limping home on the bus after the test, I knew I had encountered a new definition of pain. Happily, the bone marrow was clean.

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. In early December, my husband, Bill, and I went away to the mountains for a quiet weekend to mellow out and mentally prepare for January's treatment regimen.

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, so I figured I'd overdone it. I swore off ab work for a week.

The Mighty Mouse Protein, as one friend called it, worked like a charm. The treatments 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. 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 surgical intervention. My ovaries, the radiologist said, looked "normal."

I did my homework on fibroids. These troublesome masses feed on estrogen. My gynecologist had said I could wait it out until menopause shut down my estrogen-producing ovaries. Talking about a hysterectomy seemed premature. Fine with me - the last thing I wanted was surgery. Sleeping on my left side had become painful so I switched to sleeping on my right side. It made sense. Fibroid pain is largely positional. Just change positions. But the pain would not be ignored. It became more persistent and more diffuse. Then constipation set in. The urination pain became excruciating. That made sense, too. The bladder rests on the uterus. The fibroid is probably grinding against it, I rationalized. All symptoms agreed with what I knew about fibroids.

When the pain was at its worst, I had to fight down my growing panic. Something was wrong, but the tests didn't show anything obviously out of whack. I was perimenopausal. It was easy to attribute the changes and twinges in my body to this momentous "change of life." After all, my blood work after my lymphoma treatment wasn't ringing any alarm bells. I thought maybe it was that mysterious fibromyalgia, making a minor fibroid feel like a boulder. I tried not to think of a maternal aunt who had died at 39 of ovarian cancer.

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. My clothes became snug around the waist. I was bloated. Yuck. I gulped the prescription-strength naproxen sodium my gyn had given me for the pain.

When my vision began to blur, I went cold turkey on the pain medication in late May. Again I 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. Relief swept away my fear of surgery: At last, something would be done.

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 the hospital for more tests. On the second sleepless day, my husband and I were told that a CT (computed tomography) scan showed shadows on my liver. With the hysterectomy in the offing, it was suggested a "detour" be made to check out the liver. My test results were forwarded to the Cancer Institute.

The second gynecologist tried to allay my fears, but her pre-surgical pelvic exam revealed a grapefruit-sized mass that was collapsing my rectum.

"Just name a date," I pleaded, "and let's get on with this." A hysterectomy was scheduled for 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. R didn't waste time on niceties. He performed yet another pelvic exam and studied my previous test results. He ordered still more tests and blood work. He was blunt: I had ovarian cancer, which had probably already spread to other organs. Just how far was difficult to tell. As my mind reeled, he talked about exploratory surgery and the possibility of an ileostomy if my colon could not be salvaged, but I heard only a fraction of what he said. I was stunned. And then I was alone. While his assistant went to make the arrangements for the surgery, I sat on the examining table and cried. This can't be happening. Two cancer diagnoses in one year?

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. R, 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 over 2,300.

In the days leading up to my surgery, even more powerful painkillers enabled me to continue working and keep dark thoughts at bay. The day before surgery, Bill and I went shopping for a bed tray and Jell-O; I put great faith in my body's ability to bounce back. Waddling like a woman about to give birth, I tired just navigating the aisles of the Target store. I still believed that once my reproductive tract was history, I could resume my life. I wasn't used to spending time in bed; a rest might be fun, though. I stockpiled books.

We reported to the hospital 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. R and then convey it to our anxious families. The cancer had metastasized throughout my abdominal cavity. In what can only be described as a heroic surgery, Dr. R and his surgical team worked for 15 hours to survey the damage, cut out the diseased organs and tissues, and salvage what they could.

Months later, reading Dr. R's three-page synopsis of the surgery that saved my life, I can't help but 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, abdominal wall and it covered my peritoneum - the membrane that lines the abdominal cavity and protects the internal organs - up to my diaphragm, stopping short of my lungs. A small nodule of tumor had invaded my liver.

After draining two 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.

Later, an elated Dr. R reported to my husband that 99 percent of the tumor had been removed. I had "tolerated these procedures well." Those 5 a.m. trips to the gym had paid off. I barely remember the next two days in the intensive care unit, lost as I was in a fog of pain and morphine. But I wasn't on a respirator, so I figured things couldn't be too bad.

Both my and Bill's families circled the wagons to make sure all my needs were met and I was allowed to rest. 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. Family and friends coming in to see me blanched. At first I thought I just looked awful; later I realized they were glimpsing what I couldn't see - the reservoir of murky fluids behind my bed still draining from my gutted belly.

It wasn't until day three or four that I mustered the courage to peek under my hospital gown and survey the landscape of my "new" body. A huge wad of gauze covered an 11-inch gash from just below my breastbone to my pubic bone. Just to the right of that, a funny-shaped plastic pouch was suckered to my belly. It was filled with dark fluid. Sans colon, this was my new plumbing for waste elimination. This was the ileostomy that had sounded so vague back in Dr. R's office. The awesome nature of my disease finally sank in.

I allowed myself one afternoon to wallow in depression. Poor Bill. I told him to leave me alone for a few hours and asked the nurses to close the door. 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 to do it.

And help was always there. Dr. R gave me daily encouragement, checking days off a calendar next to my bed. The physical therapist got me up on my feet three days after surgery. The night nurse snuck me an orange Popsicle at 2 a.m. to soothe my parched tongue. Bill was always there to give me reports on the garden and our two cats. My large family of brothers and sisters and in-laws came and went in a steady parade.

Eleven days after surgery, I was released from the hospital. Because I was too weak to manage the stairs at our home, I moved into my mother's condo, where I was fed and fussed over, and tucked in at night. The post-surgical complications - more pain and a nasty infection from the urinary catheter still in place - came and went. I had lost nearly 30 pounds; for the first time in my life I had thin thighs, but I couldn't stand up long enough to admire them in a mirror. One of the strangest sensations of all: my insides were so loose and hollow that I could feel stuff sloshing inside when I rolled over in bed.

Almost a month after surgery, I was strong enough to go home. I wish I could say I got better every day, but there was still that one percent of tumor that had to be dealt with. Sometimes you have to get sicker before you can get better. Five weeks after surgery I started chemotherapy at the Cancer Institute. It was like old home week, revisiting the nurses who had seen me through my lymphoma treatments earlier in the year.

Chemo is poison. It kills rapidly growing cells, both malignant and healthy. The potent drug cocktail chosen for my particular tumor was a combination of Taxol and carboplatin. The side effects were fatigue, nausea, vomiting, joint and muscle pain and bone marrow depression, for starters.

Ten days after the first treatment, my hair started to fall out. In days, I was completely bald. Every three weeks for four months I would spend six to eight hours hooked up to an infusion pump, getting a stiff dose of cell-slaying magic. After a few days, I would bounce back.

Chemotherapy's effect is cumulative. After each treatment, it would take longer to regain my strength. Neuropathy - numbing of my fingers and feet - set in. The nausea worsened. The anti-nausea drugs helped, but they made me jittery. I went for days without sleeping. The chemo fatigue was deadening. I shuffled like a zombie. Many mornings it took a 30-minute pep talk to convince myself to roll over in bed. Just when the fatigue and nausea loosened its grip, it was time for another round.

Chemo did have its advantages, I joked with Bill. I would remember this as the summer I was as thin as I always wished to be; I didn't have to shave my legs; even the mosquitoes wouldn't bite me, I was so toxic.

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.

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, coworkers and fellow gymrats, but the outpouring of love and support never ceased to astonish and humble me. Gifts of companionship, books, videos, food and flowers arrived continually at our doorstep. The mail was flooded with cards and cartoon greetings for months. It all gave me the strength to keep my eyes on the prize of reclaimed health - of jumping back into life with both feet. By November, I was back to work part-time, thanks to a generous sick leave policy. By January, I resumed my workouts at the gym. To celebrate an April checkup and a new CA-125 reading of 37, I expanded my work schedule to full-time.

Fourteen months after my life turned upside down, I'm healthy and healing. I would be lying if I painted a too rosy picture. There are still low-energy days and dark periods of "why me?" moodiness. The ileostomy is a constant reminder of the tremendous sea change my body has been through. And I live with the knowledge that most ovarian cancers are recurring and I might have to go through this again. And I may not be so lucky the next time.

That's why I'll always be listening for the whisper.

October 2001

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