If you haven’t had the experience, let me tell you -- going in for an ultrasound to see if you have ovarian cancer is a awful experience. The waiting room is full of expectant mothers, happy and excited, showing grainy pictures of their proto-babies to anyone and everyone, while you sit there, stony faced and silent, wondering if you’ll ever have children.
At one of three ultrasound appointments I ended up having, when I walked into the examination room, the cheerful ultrasound technician asked “How many pregnancies, including this one?”
The poor woman was horrified at her mistake, and apologized profusely. I shrugged it off, but inside I felt like I was dying. No, no pregnancies. Not now. Maybe not ever.
I found out that I had a mass on my ovary a week after I was informed that I was being laid off. About a year before I had gone off birth control pills for the first time in 15 years, and ever since I’d stopped taking the pill, I’d been getting my period every two weeks.
I knew that some menstrual irregularities were to be expected, but after a year of biweekly periods I was starting to get a little irritated. Since I knew that I was about to lose my health insurance, I made an appointment to see my gynecologist, and while she wasn’t too concerned, she sent me to get an ultrasound, just in case.
So it was during my last week of work that my gynecologist called me at work with the results from that first ultrasound. “We’ve found a couple of irregularities,” she told me. My endometrium (the inner lining of the uterus) was abnormally thick, and they found a mass on my right ovary. It probably wasn’t anything to worry about, she assured me, but they wanted to give me a pelvic MRI. Just in case.
I was, of course, scared out of my mind. What was wrong with me? Was it cancer? If I had cancer, how was I going to be able to afford treatment? In one week I’d have no job, no income, no health insurance…would I be one of the thousands of people in America who died because I lost my health insurance? I made the appointment for the MRI.
The results were, of course, inconclusive. I definitely had an abnormally thick endrometrium. There was definitely a mass on my right ovary, but they didn’t think it was cancer. My gynecologist suggested that I schedule another ultrasound in a month, to see if the mass changed.
I applied for unemployment, signed up for COBRA coverage (the Consolidated Omnibus Budget Reconciliation Act of 1985, which requires that health insurance companies give employees the ability to continue their health insurance coverage after being laid off,) and made another ultrasound appointment.
After every ultrasound, the results were the same -- it didn’t look like the mass was growing or spreading. It hadn’t changed significantly, and it wasn’t acting like cancer. It was definitely, probably not cancer.
In the meantime, I went in for an endometrial biopsy, since the ultrasounds were also showing that I still had that abnormally thick endometrium. Though painful, the procedure was mercifully brief, and within a week I had the reassurance that I didn’t have uterine cancer. Fantastic! Now I only have a lump on my ovary! One terrifying medical crisis down, one to go!
My gynecologist called me in to discuss my options. At this point, she was pretty convinced that the mass on my ovary wasn’t cancer -- her guess was that it was a fibroid or teratoma (benign tumors -- I wouldn’t suggest looking them up unless you have a strong stomach) that wasn’t doing me any harm just hanging out there on my ovary. She said I’d probably want to get it removed eventually -- it had the possibility to cause complications when and if I got pregnant -- but there was no rush.
Since I was still unemployed, waiting sounded like a fabulous idea.
I did, of course, eventually find another job, and once I was settled in and my new health insurance kicked in (almost a year after that initial we-found-something-on-your-ultrasound call), I figured it was time to deal with the lump on my ovary.
Because I had changed insurance companies, I couldn’t go back to my previous gynecologist, so I called my new gynecologist’s office and explained the situation. They set up an appointment for me with the head of surgery, and when I went in to meet her I was reassured by her calm confidence.
I told her all that had happened, and she assured me that the surgery would be easy and recovery would be swift. It would be a laparoscopic procedure, which meant that there would only be three tiny incisions. They would blow up my abdomen with air, stick a camera in me, and using tiny instruments stuck through a half-inch incision they’d cut the mass away, cut it into tiny pieces (if necessary), and remove it.
The surgery shouldn’t take more than an hour and a half. If I had the surgery on a Friday, I could be back to work by Monday. Easy peasy.
I scheduled the surgery.
On the ninth of July, 2010, I went down to the outpatient surgery center near our local hospital. I put on a gown, had an IV stuck in my arm and was taken into a room that looked like something out of Alien Autopsy, with tubes and wires and bright lights everywhere. I joked with the nurses as I climbed up on the big metal table. The anesthesiologist said that she was going to put something in my IV that would make me sleepy. Almost immediately I felt a wave of drowsiness wash over me.
“Wow,” I said. “That fast?”
The anesthesiologist laughed. “That fast.”
I woke up on a gurney in a curtained-off section of a large room organized around a central nurse’s desk. There was a woman beside me, blithering on about crackers and ginger ale. I faded in and out for a while, coming to long enough to wave away the constant onslaught of crackers and ginger ale, then dozing off again.
When I finally came to long enough to agree to the crackers and ginger ale (if only to shut her up) it all started to come back to me. When the nurse returned with my crackers and a small plastic cup, I asked her how the surgery had gone.
“I wasn’t in there, I don’t know. Let me go get your husband.”
I was munching on crackers when my husband came into the room. I asked him what had happened, and what my doctor has said about the surgery.
He told me that the surgery had taken three hours, and that he hadn’t had much time to talk to my doctor, since she had been late for her next scheduled surgery. He told me that the mass had been much larger than they had expected, and had consisted mostly of muscle tissue.
It had been so hard and so dense that they hadn’t been able to cut it into pieces, so they had made a fourth, much larger incision to be able to get it out. He said that there had been almost no normal ovarian tissue left, and that my fallopian tube had been wrapped around the mass.
They had to cut it all away -- fallopian tube, ovary and mass. It was all gone.
I burst into tears.
The nurses wouldn’t let me go home until I had successfully used the bathroom, so they got me into a wheelchair and helped me hobble into the restroom off the recovery area. It was there, leaning on the sink, pulling my gown up and looking in the mirror, that I first witnessed the incredible violence that had been done to my body.
The incisions in my belly button and on my left side were, as advertised, small and insignificant. The slightly larger incision on the right, where they had first attempted to remove the mass, was all bruises and swelling.
And as scary as that small cut looked, it was nothing compared to the fourth incision, the unplanned incision. That one was just above my pubic bone, four inches across, an angry red slash surrounded by a field of livid black and purple bruising that stretched down into my pubic hair and up onto my belly.
Because of that fourth, unplanned incision my recovery time was quite a bit longer than the promised three days. The bruises faded to red and blue and yellow, the incisions healed and scarred. My surgeon called me the week after my surgery, to see how I was healing, and to answer any questions I might have.
She told me that there was nothing she could have done to save the ovary -- that there was nothing left to save. She promised that my fertility would be unaffected, and that my uterus and left ovary both seemed to be in perfect health. She was kind, and patient, and answered all of my questions carefully and completely.
I hated her.
Oh, I knew that she had done her job, and done it well. I knew that she had done what her education and experience had told her was the best thing to do. I even knew that, if I had had the opportunity to be told what she had found and to make my own decision about what to do, I probably would have told her to take the mass, the ovary and the fallopian tube. It was the only thing to do.
But that doesn’t change the fact that I went in to that surgery confident that I would walk out with two healthy ovaries and I left with one.
I know that all kinds of people have various organs removed for various reasons, and that they have a wide variety of reactions to that removal. Some people are utterly indifferent. Some people rejoice that the offending organ will no longer trouble them.
And some, like me, are traumatized by it. I feel like my body betrayed me. I feel like my surgeon stole something from me.
And maybe I would feel differently if it had been some other body part. Maybe if it were a kidney, or a lung, I wouldn’t feel so broken. But it was an ovary -- an organ that I associate with my gender identity, with my femininity, an essential part of who I am. It represents half all of the children that I might have had… all that possibility, gone forever.
What if all my good eggs were in the right ovary? What if the left ovary has all the eggs that carry the genetics for my bad knees and chronic headaches and weak fingernails and tendency for depression and anxiety?
I know, logically, that it was the mass -- an accident, a twist of fate, a force of nature -- that took my ovary away. There was no malice, no evil plot to rob me of the possible 150,000 eggs (give or take) that ovary should have given me.
But in my heart, I can’t help but mourn, both for the children those eggs might have become, and for the space in my body where there was once an organ that now is empty.
As for the mass they pulled out of me, they had to send it to the Mayo Clinic for analysis before they could confirm that it was a fibroma, they’d never seen one so large and dense, and the first pathologists who had looked at it wanted a second opinion before they told me that it was benign.
It’s strange to think that a part of my body flew across the country to the Mayo Clinic without me, to be poked and prodded and analyzed by people who have never -- and likely will never --meet the rest of me.
It’s been a year-and-a-half since my surgery, and I continue to heal. In June of 2011 I discovered a wonderful company called I Heart Guts, and I bought myself a new ovary, all pink and purple and adorable. She sits on my nightstand, a reminder every day that I am more than my parts, and at the same time that it’s okay to mourn the things that I’ve lost.