Nothing in my life could have possibly prepared me for that moment. I was in a scenario that most women know all too well: vulnerable, naked except for a thin cotton gown, open in the back. I was waiting for the doctor to come in and tell me to put my feet in the stirrups, scoot down on the table. But I was even more nervous than usual, because I had just given birth to my son Jack six weeks before, and this wasn't a typical gyno appointment.
When the doctor came in, he didn't ask me to scoot down on the table. He just sat down on his little stool. My mind wandered as I pondered the absurdity of this short little man, this tiny little stool. I glanced over at my sleeping baby and my husband, Jim. He looked terrified. When the doctor started to speak, the words coming out of his mouth didn't make any sense. He was saying strange, foreign things, things that were impossible. Things like aggressive...metastatic...could be in your lungs. He was talking about CT scans, inpatient chemotherapy, MRIs. Then he said: "This is a very aggressive cancer, and we are going to treat it aggressively, with multi-agent chemotherapy called EMA/CO."
Using a pelvic ultrasound, the doctor pointed to a tumor growing inside my uterus. He told me I would need a D&C to get it out. He said that I had choriocarcinoma, a rare type of cancer that occurs in the uterus during pregnancy. I learned a few months later that it was stage III and metastatic, meaning it had spread to my lungs. While they never quite determined how this happened, it's likely that I'd had a molar pregnancy (when a fertilized egg develops into a growth instead of an emrbyo), and that it had occurred before, during, or after my pregnancy with Jack. And that at some point, the molar pregnancy had grown into a life-threatening cancer.
10 Months Prior
The day I found out I was pregnant with Jack was the best day ever. My husband Jim and I had been trying for 13 agonizing, heartbreaking months. This particular month, I took a pregnancy test on the 29th day of my cycle. I just couldn't wait. My husband asked me if the test was positive, and as I lay on the bed crying I said, "Of course its not. It's never going to be."
Later that night, after I got home from work, I picked up the test, which I had forgotten about and had left lying on the bathroom sink. I felt like I might be hallucinating, because I detected the tiniest shadow on the little plastic stick. I called Jim and told him I thought the test morphed. I wanted to take another, but he talked me out of it. I only had one left, and he was working overnight as a paramedic. I told myself to forget it and go to bed, only to toss and turn all night.
When I heard the key turn in the lock at 7AM, I leapt out of bed and peed on the stick as fast as possible. I tried to look somewhere else for sixty seconds, and when I looked back, there it was: the faintest—yet slightly darker than the day before—but unmistakably pink line. I flew out of the bathroom and ran down the stairs and outside, where Jim was taking our dogs out. All of my Pinterest-worthy pregnancy reveal ideas flew out the window as I screamed to my husband "Soooo...... WE'RE HAVING A BABY!!!!!" Like I said: Best. Day. Ever.
My "Not Uncommon" Pregnancy
My pregnancy was, for the most part, healthy and unremarkable. I did wind up diagnosed with gestational diabetes around 28 weeks, which at the time felt like a huge disaster. I am literally chuckling as I write this, because before my pregnancy tried to kill me, before I was diagnosed with stage III choriocarcinoma, I truly thought that having to prick my finger to take my blood sugar after meals was the end of the world. Turns out, perception changes everything. I also caught a stomach bug around 22 weeks and had some spotting on Christmas. The doctor said it was fine, normal, the first of many "not uncommon" occurrences in my pregnancy.
But I always thought that something was wrong. When my son was born, almost everything seemed like a blur, but I do recall the midwife calling my husband over. She showed him my placenta, spread out in this weird plastic tray. She said that I had two amniotic sacs, and she told him that in her nearly 30-year career as a midwife she had never seen anything like it. They sent the placenta for pathology, and I promptly forgot all about it, wrapped up in my love affair with my beautiful, perfect baby boy. Something still felt off, but I chalked these feelings up to first mom jitters and tried to silence my instincts. I was discharged from the hospital after two uneventful, unremarkable "not uncommon" days, and got started on loving my new son and life as a family of three.
Still Hushing My Intuition
One day when Jack was about four weeks old, I bent over to plug in my phone and felt a gush in my underwear. I felt like I wet myself. I had recently stopped bleeding postpartum, so I wasn't even using a pad. But it cramped, too. I went to the bathroom to investigate, and gasped. There was so much blood. I sat down on the toilet until it passed, then called my husband. He said one drop of blood can turn the whole toilet pink—it was probably less blood than I thought.
I changed my clothes, leaving the underpants and sweats on the bathroom floor. When I looked later, I found three extremely large clots. It looked like something out of a science fiction movie. I called my OB-GYN and that's when he used those famous words: He said bleeding after childbirth—even if the bleeding had stopped and was starting up again—was, you guessed it, "not uncommon."
One morning shortly after that I woke up in bed with a horrible ache in my belly. I tried to sit up, and I remember saying to Jim, "Something is wrong. Something is really, really wrong." I was still bleeding, so I called the OB again. "It's just your period, Kathleen," the nurse said condescendingly. It sounded like she knew what she was talking about, so when they refused to see me until my six-week follow up, I didn't think much of it. It was only two more weeks away. I called a few more times but again was told it's "not uncommon."
When I finally got to that appointment, the midwife arrived and began a pelvic exam. I braced myself, but it wasn't as bad as I anticipated. Until she said, "Hm, why is your uterus over here?" She continued to prod my cervix and mumbled something about how she wished she had seen me two weeks ago (I nearly fell off the table). I explained that I had been telling them something was wrong, calling, begging to come in.
She told me she didn't know what it meant and sent me to the hospital for an ultrasound. Afterwards, my doctor called and sounded calm. They still didn't know what it was, but "it's probably just a bit of retained placenta. We'll see you in the office on Monday. Maybe give you some medication to expel the tissue." I was livid. I couldn't believe this was happening. But little did I know that in less than I week, they would be telling me I had cancer.
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The Aggressive Approach
So, that's how we got to that appointment—with the silly little man on his silly little stool, telling me that I need chemotherapy. He told me I'd have a D&C to remove the tumor and we needed to schedule the surgery the next day. He said there wasn't time to wait and explained that my regimen would be 14 days long, with a 12-hour infusion of chemotherapy on day one. They referred me to Aasim Sehbai, M.D., at Tunnel Cancer Center, who would eventually become one of the most trusted and valuable people in my life.
I fought the cancer for six months before my levels of beta HCG, the pregnancy hormone, fell to less than five. (When this all started, it was over 300,000.) My cancer metastasized to my lungs. I was lucky, because that made me only stage III. If left unchecked, the cancer can spread to the liver, lungs, and eventually, the brain. I had 13 rounds of EMA/CO, the "aggressive" chemotherapy drugs the funny little doctor mentioned. I had to have two blood transfusions, and my liver was failing at one point. They told me not to touch my son, they said that I was toxic, so the only one in my house that would touch me was my dog. It was a pretty dark time.
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Getting My Life Back
It's now been more than six months since I finished chemotherapy and my journey "ended," but it feels like just the beginning to me. It has ushered in a new time in my life, where I slow down and enjoy things. I got to meet a doctor who changed my life and women who changed my life. I had the opportunity to learn things about myself I never would have known, like the fact that I apparently have a huge badass hiding inside of me.
This story is supposed to be about my pregnancy and my cancer. But, really, this story is about my life. Cancer is not what defines me. Cancer is just one small thing that happened to me. I was lucky they found this cancer, which falls under a category of diseases called Gestational Trophoblastic Disease, or GTD. What I had was rare—somewhere between 1 in 500,000 and 1 in 1,000,000. So much more could have gone wrong. Jack could have been a molar pregnancy, and then we wouldn't have him in our lives. Instead, the doctors think the molar pregnancy occurred before or after Jack, though it's also possible it occurred during that same pregnancy, which may have explained the unique issue with my amniotic sac. The tumor could have overtaken my uterus and killed Jack—or me. If you've ever watched The Little Couple, you know that Jen Arnold had the same thing, but she didn't get to have her baby. I wish that I knew more about my cancer. I still don't know for sure when it started or why it happened. I might not ever have the answers, and I think that's OK.
If you're wondering what you can do to prevent this from happening to you or a loved one, the best place to start is with your doctors. Let's open up the dialog about this horrible disease. Molar pregnancy was described by my primary care doctor as "just one paragraph in a medical textbook, that wasn't even discussed in class." My ob-gyn had never seen or treated it, and my gynecologic oncologist had never treated a choriocarcinoma, although he had treated molar pregnancies. So spread awareness. Talk to your sisters and mothers and friends. And if you have any of my symptoms, or feel what I felt—that instinct, that feeling that you couldn’t put your finger on—please, tell your doctors that you need to be seen immediately. Don’t assume that a quick phone call to an on-call doctor or nurse will suffice if you’re sure that something is wrong.
You can read more about my cancer on my blog, including near-daily updates from the time I started chemo until the final few weeks.
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