My Story | Gina, Pennsylvania, USA

Ovarian cancer
oophorectomy, 1991, at 26
Radical hysterectomy, June 1997 at 33

Every time I think of my childhood, I see myself on a summer night.

Specifically, I see myself on my parents' front porch on a summer night. Sometimes I remember the swarm of neighborhood kids, who always seemed to congregate on our porch, but most times, I see myself sitting there with my best friend when I was a kid, Vicki. We'd play Barbie dolls until it got too dark to see the tiny snaps on Barbie's clothes. Then, Vicki and I would just sit there in the deepening darkness and talk about Our Innermost Feelings.

Keep in mind that we were pre-teens, so the conversation usually went something like this:

• What would David Cassidy think of me if we ever met?
• What would I wear if I knew I was going to meet David Cassidy?
• What do you think we'll be like when we grow up?

That last one was the biggie. We'd muse and imagine and dream about our adult selves until our mothers called us in to bed. I'd head inside, but sleep was out. I'd lie awake and continue the daydream, longing to know what the future held. It felt like the answers were just sitting there, on the other side of a little black curtain, which I longed to sweep aside for the tiniest of tiny glimpses. I didn't want to know it all, just a crumb or two to satisfy my curiosity until the real thing came along.

Now jump forward a decade or so. I am in my mid-twenties, living back at my parents' house – though I rarely find time to sit on the front porch anymore on summer nights. I am too busy. I am building a career as a TV producer, and shockingly enough, I actually am having some success at it. I make pretty decent money, which I spend on movies and dining out and a funky earring collection and a workable car. I think, This is it, this is the adulthood Vicki and I wondered about.

I do luxurious things, indulgent things, with my free time, like ordering two desserts in a restaurant if I can't make up my mind, seeing three movies in an afternoon, reading magazines while I soak in the bathtub. It is during one of these bathtub reading sessions – shortly after my 26th birthday – that I glance down at my naked body and notice something odd: The right side of my abdomen seems. . . uneven. Puffy, maybe. A little higher on the right side. I drop the magazine and make sure to press my back absolutely flat against the bottom of the bathtub.

When I look down again, the lump is still there. It is big and firm and uneven and unmistakably different from my body's usual shape.

The next ten days are a blur of emergency ultrasounds and endless blood tests. Doctors continue to stretch their fingers inside me to feel this mass, which has the distinction of being enormous. One radiology department even brings all of their interns into the room so they can witness this extraordinary teaching case: A mass so large it obstructs the view of every other organ in my abdomen.

I do the usual things: Fall apart, shake and cry, rally and tell myself this is some kind of mistake. I look a little more wretched with each passing day, as I am not allowed to eat (due to the extensive tests they are conducting) and also because I am being drained of my blood vial by vial.

"But nothing hurts," I keep insisting, frantically, almost pathetically. The doctors just sort of humor me, compressing their lips and nodding absently as they continue their exams. "I mean, cramps, sometimes it feels like really bad cramps on the right side. But nothing actually hurts."

Friends and family members crawl out of the woodwork with stories of people who had scores of conditions that presented themselves with lumps in the abdomen. I keep hearing about Olympic-size fibroids, even someone with two uteruses. But all of the stories end the same way: And it turned out to be benign.

It is Day 5 of this circus before anyone mentions the word we've all been thinking: Cancer.

Bloodwork suggests. . .

We can only make a definitive diagnosis at surgery. . .

Just keep calm until we figure out what we're dealing with here. . .

The doctors utter other words too, like ovarian and hysterectomy, but those stories all end another way: She's so young, let's see what we can save. . .

The thing that strikes me repeatedly, over this ten-day period, is that I can not remember the last thing I ate. I think it was cold pizza the day before I discovered the lump during my bath, but I can not be sure. And all I can think is that if I die during this operation, I will not be able to remember the last thing I ate. Food holds enormous importance in my family. Eating, for us, is like an endurance event. To die with this hanging over my head feels like a major failure of my birthright.

At first, I am starving, I crave my favorite foods. I want chicken romano, I want halupki, I want a hot fudge sundae with lots of whipped cream.

But I start to feel sicker by Day 6, from the multitude of tests and the barium and the radioactive isotopes and the conspicuous absence of much of my blood. I think some cereal might go down okay, but I'm nauseated and in any event, I'm not allowed to eat so what does it matter anyhow.

Still, I wish I could remember with some certainty if it really was cold pizza I'd eaten last.

My parents are trying very hard not to cry as I kiss them goodbye before being wheeled to the operating room. After days of spinning nearly out of control, I decide that it is terribly important to remain positive, to remain calm, to go into this operation with a body ready to work with me, not against me. In the last few days before surgery, I called upon a level of concentration of which I formerly did not know I was capable. I managed to stop the spiral, to achieve some wafer-thin veneer of calm and even though I want to say more to my parents before I am wheeled away, I am afraid I'll break down and cry.

So I wave and I smile and then I am gone, wheeled to an operating room that is not quite ready for me. The orderly parks my little gurney in a hallway between two tall racks of clean laundry and leaves me there to wait. It is surreal, these minutes of waiting. I glance out the window at a city twelve stories below. It is just after Labor Day weekend and the streets are once again clogging with cars, and as I crane my neck to get a better view a pigeon flies past the window.

I notice every single detail of the city, then, individually but also all at once. I see the streets, the office buildings, the churches, the little playground set up in some tenement's back yard. I see the river, I see tiny figures of people walking on the sidewalks and I see that damn pigeon again flying back and forth. And that is when it hits me: If I die, that's it, I die. Nothing else stops, it's just me that goes, and the rest of these things will still be here tomorrow without me.

My calmness is gone.

An instant later a nurse returns for me and she wheels me inside the operating room with an air of friendly efficiency. Business as usual for this one, in fact, business as usual for all of them. The room is small, but blindingly bright, and I can hear pop tunes playing on a radio next door.

It is suddenly essential to me that I see my doctor and wish her luck before the surgery. I know her and I trust her and I don’t know any of these other people. I think the only thing that will keep me from hyperventilating is seeing my doctor and wishing her good luck.

I say this to one of the nurses, who looks put out but still tries to keep her smile in place. "She's just coming back from lunch and she's going to scrub in while we prep you for the surgery. But we'll tell her what you said."

No! I say, much more forcefully than anyone in the room expects. I want to see her, just tell her I want to see her, she knows me, she'll come.

The nurse looks more pinched. "But she's still coming back from lunch –"

Just tell her I want to see her! I explode, a little hysterical, and everyone in the room stops.

The nurse finally leaves and the minutes tick by while the anesthesiologist and his assistants look impatient that they can not get this show on the road. Finally, my doctorarrives, just as I knew she would. She smiles and I feel better.

"We'll see what we find and I won't take anything that I don't have to take," she assures me.

"Good luck," I tell her, and she says, "Good luck to you." I laugh, breezy, as if I'm around the office water cooler cracking jokes. "Hey, I have the easy part, I just get to lie here while you do all the work," I say, and she laughs and then our smiles fade and she pats my hand.

"I'm going to go scrub in now, okay?" and I know she won't leave until I tell her I'm ready.

"Okay," I nod, and I lie back on the table and stare at that bright light.

The rest of the O.R. staff moves in, ready to at last get to work, and my arms are stretched out and secured on the table and one nurse leans over and sticks some patches on my chest. Immediately, I hear boom-BOOM, boom-BOOM amplified in the operating room and I realize belatedly that it is the sound of my own heart.

boom-BOOM, boom-BOOM, boomBOOM, BOOMBOOM, BOOMBOOMBOOMBOOMBOOM.

A needle goes in my vein and a mask lands over my face and somewhere behind my head I hear the anesthesiologist ask, "Why is her heart beating so fast?"

And someone, I don't know who, someone on the left side of the room replies, "It's nothing, I think she's just scared."

I can feel myself melting into the table as the anesthetic travels into my vein and oxygen fills my nose.

It's nothing, I think she's just scared.

I think to myself, "If I die now, the last thing I'll ever hear is my own heart beating how scared I am."

And then I am asleep.

I tell people that I wouldn't wish cancer on my worst enemy, but that I also wouldn't trade the experience for the world. I learned lessons in a few short days that I suspect take most people eight decades to figure out. When I do die, regardless of what is at the root of it, I do not want to hear my own heart beating out how scared I am.

I bask in my newfound wisdom, relieved that the tumor they removed was enormous but contained; cancerous, yes, but the earliest stage. My doctor was able to remove the 8-lb mass and the right ovary, but the rest of my reproductive organs remained nestled snugly inside of me.

I am suddenly freer, more lighthearted, more true to my self. I am no longer a workaholic. I always savor every last mouthful of food I eat, and I am more likely to tell people what is in my heart and on my mind.

I recite it as a joke to others. I was hit by a car, but thank God it was a Lexus.

Of course, I am not so carefree in quieter, private moments. Ovarian Cancer is now tattooed on my soul, and it defines every single moment of my life. At one point, I am stopped for a speeding ticket and my first thought is shock and disbelief, as in, How can you possibly give me a ticket, I'm a cancer survivor?

Gradually I come to believe that it's over, it's behind me, and I think that I will now trot through life, wise and happy, basking in the knowledge that I dodged the bullet and became a better person for it.

This fabulous insight lasts 18 months.

A routine appointment reveals another mass, growing on my fallopian tube. In many ways, this one is harder for me to digest than the first one. I bolstered my courage that first time, saying it was a one-time freak, something that appeared out of nowhere and was attacked. Cut out, destroyed. I had Beaten It.

And now it turns out that I had beaten nothing. Plain and simple, another mass was back. Yes, still an early stage; yes, still neatly contained. When I expressed some panic over it, my new oncologist waved her hand dismissively and practically snorted, “I know a lot of women who wish they were in your position.”

So I had what appeared to be a little case of cancer. Was this, I wanted to snap back at her, anything like being a little bit pregnant?

I was panicky about cancer because for generations everyone in my family died of cancer, so I suppose my raging fear was more of the diffuse, general kind that had to do with worrying about bad luck in the gene pool.

But I did have another fear forming inside me, and this one was very, very specific.

At this point, I was on the far side of 27 years old, and I was thinking children children children. I had developed a new respect for my reproductive organs after that first bout of cancer. I came to realize they held the key to my, well, reproducing.

"Just take the tube," I carefully instructed the doctor before this second surgery. "If you find anything else, close me up and we’ll talk about it, and then we can go in again if we need to."

Hunkering down, we cut again, taking the tumor, taking the fallopian tube. By this time, I was on the far side of 27 years old, and I was thinking children children children.

"Just take the tube," I carefully instructed the doctor. "If you find anything else, close me up and we'll talk about it, and then we can go in again if we need to."

Hunkering down, we cut again, taking the tumor, taking the fallopian tube.

I was afraid of cancer, in general, but I can’t say I was really afraid of dying of this, some junior case of cancer that apparently didn’t even seem to worry my oncologist.

What I was afraid of was losing a child that had been conceived in my mind and taken shape in my heart. A little girl, one with curly hair, blue eyes, bow-shaped lips. She was funny and smart and compassionate and quirky and I even gave this little girl a name. She was my angel child and every decision I made from that moment on was done in the interest of delivering this angel out of my mind, out of my body, and into my arms.

The Mother's Day that passed the year I was 28 had me buying a little decorated cupcake at the local grocery store. It had thick ripples of frosting and a tiny plastic heart on a toothpick, proclaiming the words, "Happy Mother's Day, Mom!" I ate it alone in my apartment, in a manner that could only be described as grim and determined. I licked the icing off the toothpick heart and I set it in the sink, where I would later wash it and wrap it in tissue, and stock it away in a box to one day show my daughter.

I bought that cupcake as a show of faith to the ovary still pumping away on my left side. Two more operations had come and gone in the past year. Endometriosis, scar tissue, unstoppable menstrual flow, a couple of small cysts. I could not quite tamp down the sneaking suspicion that this was all just the warm-up act for some spectacular cancer recurrence.

And yet I did not really feel my life was in danger.

But my little angel daughter’s life. . . Well, that was a different story.

At least, that is how I viewed it. During one routine follow-up appointment, my oncologist casually announced, Tumors like yours are bilateral. They usually jump to the other side. You’ll probably see it again by the time you’re 33.

And at that moment, a giant countdown clock started ticking in my soul.

So I developed an obsessive concern for my little angel girl. Technically, yes, I could have gotten pregnant right then and there, everything that remained was functioning properly, the necessary plumbing was still in place.

I toyed with the idea of just doing it, just getting pregnant, certain it would be the daughter I imagined who traveled out of my body and into my arms. But I wasn't dating anyone seriously, and I was not ready to become a Brave Single Mom. So that meant I had to buy cupcakes and offer them up to the Left Ovary Gods and hope that the thing would still be there when the time was right.

Depressive episodes swirled around me, mostly late at night, mostly after a lackluster first date that would never turn into a second one.

I had two clocks dueling inside my head, and the tick tick tick sound was deafening. One was the "biological clock." The other was that countdown clock marching toward the magic age of 33 – the countdown clock inspired by an oncologist I’d long since dumped for one with a better bedside manner. To be frank, I had turned into the proverbial “nervous wreck.” I was obsessed with worrying which would grow inside my body first: A cancerous tumor, or a baby girl.

New pains materialized in my side, sharp, excruciating ones. I would wear pants with diagonal pockets so I could keep my hand pressed over my side all day long and not look obvious at work. I would bleed for months on end, and still, I refused to have a hysterectomy. D&C’s, laparoscopies, sure, fine—and by the time I was 30, I’d chocked up two more surgeries – but the hysterectomy idea was out.

Why is this happening? I wanted to shout, but I didn't have the nerve to question God.

I am not an overly religious person, but I am a deeply spiritual one. I believe in God unwaveringly, and I believe there is always a plan. But just as I did on those summer nights when I was a child, I longed to peer around the little black curtain for a teensy glimpse of what that plan was. Things seemed haywire, out of control. People would tell me, Hey, any one of us could be hit by a bus at any moment. And I wanted to snap back, There is an enormous difference between not feeling safe in the world and not feeling safe in your own body. But I didn't know how to say that to someone without crying so I usually bit my lip.

I wanted to know the plan, dammit, I wanted to know that this railroad map of scars on my abdomen were not carved there in vain.

I know I was lucky. Sometimes I sheepishly think I was luckier than I ought to be. I am acutely aware of what the survival odds are for ovarian cancer patients. As I sat in my oncologist's waiting room, I was deeply aware that while I was there laboring to preserve my fertility, these other women were just being made comfortable until they died.

So as I lay there all those nights not questioning God, I also shrugged off the guilt at being so greedy. It wasn't enough that I had lived, I also wanted my imaginary daughter to somehow become real.

Months passed and the pain in my abdomen subsided. The pain-free spree stretched into a year, and then a year and a half and I was feeling better than I had in seven years. I toyed with the idea of artificial insemination, and the day after I bought a book on the subject, I went out on a blind date and met a man I would thank God for the rest of my days.

I didn't just meet someone, I met a perfect someone. He was everything I had ever hoped to find in a mate, and in short time we got engaged. We began to plan a wedding, we talked about having kids after a couple of years and I smiled, took my first deep breath in nearly a decade. For the first time in what seemed like an eternity, I was not frantic about my imagined angel daughter. She would nestle safely in my mind while my husband and I got married, spent time together. She would come to us when the time was right.

This is it, I thought, this is the plan God had for me all along.

The black curtain parted and in that instant I thought I saw a glimpse of what my future held.

And then something unusual happened: I started worrying about dying again.

The last episode came out of the blue. There was no pain, there was no lump. What there was was a phone call from my doctor who told me my bi-annual CT scan revealed a sizable mass on my left ovary.

And guess what… I was just a few months shy of turning 33.

"You're kidding?" I kept repeating, like a dumbfounded parrot.

As it turns out, she was not kidding.

There was no question in my mind that I wanted a hysterectomy. Everyone in my family died of cancer. I grew up knowing that, I’d lived my life in fear of it. I whiled away the moments before surgery wondering if I had waited too long, if I should have been worrying about dying instead of worrying about giving birth to a child.

I whiled away the weeks after surgery contemplating that thought even more gravely. This time, the soft-ball sized tumor was not polite enough to remain in a neat little package on my ovary. The oncologist explained that a few stray cells had likely sloughed off of the tumor, were floating around in my abdomen. And yes, of course, there was the possibility they’d settle somewhere and grow.

He considered a course of chemotherapy but then decided it wasn’t necessary. “I’ve seen women live a long time without these cells causing any problems,” he told me, very kindly, very reassuringly – and yet, I was not entirely reassured. Perhaps it should have occurred to me in the past seven years that I would not be around to raise any child if ovarian cancer snuffed out my breath.

As the hysterectomy scar blended in with the array of other ones marking my stomach, the ache in my heart doubled each day. I found that I was able to accept the possibility of free-floating cancer cells in my abdomen a whole lot better than I was able to cope with the definitive loss of my imaginary daughter.

"You're alive," my mother would hiss when self-pity overtook me.

I stopped even trying to respond to that. I would never claim that losing my little imaginary daughter held the same significance as losing a real child, one a mother held in her arms and watched die before her time. But this kind of loss called for some grieving, too. This kind of loss left an enormous hole in a region of my heart that I had reserved just for her.

Less than a year after my surgery, my perfect mate and I did get married, and we did wait a year or so before we talked about children. Adoption, we resolved, as I had come to tell myself that my goal in life was not to give birth to a child, but to raise one to be a decent adult. We’d eventually adopt one of each, a boy and a girl . . . although I chose a different name than the one I had assigned to my angel daughter. She had already lost enough; I could not give away her name, as well.

So we filled out paperwork. Reams and reams of paperwork. When it came time to specify if we wanted a boy or a girl, we decided to write "either" in the little space provided, grinning as we told each other that this was what it was like not to find out the baby's sex during the sonogram.

Of course, secretly, privately, deep in my heart, I was hoping for a girl. That's not even true, I was expecting a girl. That had to be God's plan, the daughter I was due, coming to me this way instead of from my body, and I would ooh and ahhh at the "rightness" of the world, telling friends I expected to one day look at that girl and know she was the one I had imagined all along.

I am rocking in a chair, breathing in the deep, crisp scent of a summer night through an open window. It is exactly the kind of evening I recall from my childhood, and it has come to me a few months earlier than the calendar would suggest. It is a rare treat to savor, dark and peaceful and cool, and while I am rocking, I am not wondering about the future. I am watching my children sleep.

I am watching my two sons, each one 11 months old, born to sisters in a country ten thousand miles away. We were supposed to have one of these boys, but they both are here because some clerical worker in Russia mixed up their paperwork, processed the wrong baby for adoption my mistake. And when we found out about the other boy, we thought it would do their souls good to stay together in life, so we took the leap of faith and decided to adopt them both.

All of those years of waiting for the lightning bolt to reveal my destiny, and here it turns out my fate was held in the hands of a poor clerical worker in a country I never dreamed I'd see. Because these two boys are my destiny. The life I struggled to save through years of cancer I would gladly lay down in an instant for either one of my sons.

There is no money left over for another adoption in a couple of years. I have given away the little pink daughter outfits I had accumulated over the years. I have given up the idea of raising a girl.

But I do not grieve for my imaginary daughter, because I realize that she was never confined to my imagination at all! She was in truth my angel, there to keep me holding on until my two sons were ready to arrive.

I should mention at this point that this is not a story about what cancer took from me. But I think you already guessed that. It is, in fact, the story of what cancer gave to me, instead. Lately I’ve come to think it’s not even a story about cancer at all.

I hope my two sons have memories of summer nights to bolster them when they are adults. I hope they remember catching lightning bugs and playing ball and sitting on the front porch talking to each other about their dreams.

I want them to talk about their dreams but I don’t ever want them to worry about their futures. Puny little humans aren't allowed to glimpse behind the black curtain to peek at their futures for one very good reason: There’s no way we’d believe we have the courage to face what the Future holds in store.

What I want my sons to understand -- what I hope I can raise them to understand – is that the world will turn the way it is supposed to turn, with or without their worrying, with or without their help. All they can do is walk through the black curtain, figure out where they are, then take a deep breath and walk through the next curtain ahead of them. They will have the courage, no matter what they find on the other side. They are stronger – we all are stronger – than we think ourselves to be.

May 2000, Revised April 2011

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©Gina Catazarite, 2000 and 2011