IT HAPPENED TO ME: My Miscarriage Caused Cancer

My visit with the best gosh darn doctors in the country ended with a shrug and a bill. They called me "a quandary."
Publish date:
March 1, 2016
miscarriage, pregnancy, Cancer, grief, Gestational Trophoblastic Disease

I had been tearfully begging my fiancé, Scott, to start trying to have a baby for a couple of months. He wanted to wait until after the wedding, and while I accepted that was the most prudent decision for everyone involved, I couldn't talk myself out of wanting it.

Then we "pulled the goalie" once, and that's all it took.

Despite genuinely wanting to have a baby, when I found out I was pregnant in early December, 2015, I panicked. Suddenly, all those trivial concerns that Scott had listed when I was trying to convince him to get going on the baby-making weren't so trivial to me.

I was thrilled, though. I wondered about who was growing in there, about what it would be like to raise a baby with Scott, the person who made me think that maybe — just maybe — two people can grow alongside one another without the faintest trace of mutual self-destruction. I liked to daydream about how different it would be from the first time I had a baby, when it was me raising my daughter on my own. I was excited to feel what it was like to be in love with – and committed to – the father of my child.

But then, at around five weeks, I started spotting on and off for a week. Some internet research told me this was normal in early pregnancy, as long as it didn't turn bright red.

Then it turned bright red.

When I started bleeding more heavily, we decided to go the ER. It was a Saturday, the day after Christmas. My doctor wasn't available, and it was becoming painful.

After a three-hour wait, we got a room, and they did a blood test and an ultrasound. They saw nothing. By that point, I was cramping and bleeding so heavily, I knew there was no chance I was still pregnant.

I sat up from the bed as the doctor walked in. This was it. I knew what he was going to say.

"Your HCG levels are quite low. It does appear that you have experienced a miscarriage."

Scott walked nearer to me and took my hand. I couldn't hold his gaze.

"I'm sorry," the kind ER doctor said.

"Oh, it's okay," I said. (It is? I thought.) "It happens to a lot of people."

An inordinate amount of people knew I was pregnant. I had been so excited to share our good (if daunting) news, and it was harder than I expected to recount my loss. I felt like I had to apologize for or downplay my complex grief because it wasn't understood by people who had never been through pregnancy loss. I was only six weeks along, after all. Did I even have the right to be as sad as I was? I didn't even know how I felt; how could I expect others to know what to say?

Mostly, they said nice things, but that was not true of everyone. Older women who had been through it themselves recounted their own losses, sometimes to illustrate their empathy, but also sometimes it felt like they were trying to dismiss my experience as "not as bad" as theirs, or something that they had to "get over," and I would, too. Some people went the other way, and made such a big deal about how sad they were for me, as if nothing could be so tragic, and I found myself trying to comfort them. One of my coworkers laughed when I told her what happened — I think out of discomfort, but still. People — good people, who mean well — are capable of such insensitivity. It boggled my already-rattled mind.

When I followed up with my OB, she didn't offer much comfort. She did offer to place an IUD so I wouldn't have to worry about this happening again. We were not looking to get pregnant right away, but we were planning on trying as soon as we were married in May, so I asked for a script for the pill instead, just for the next few months.

"It's not like you were trying to get pregnant, right?" she asked, jotting down my prescription.

I know she was trying to offer me a positive perspective; I know there are women who struggle with fertility, or who suffer multiple losses when trying to conceive. I guess I should count myself lucky that I'm not going through that. But the idea that if we weren't trying to get pregnant so it shouldn't be that big of a deal was not comforting in the slightest.

"Right," I conceded, because, just like all my other negative emotions, I wasn't even sure they were valid.

She told me to come back in a week for a blood test to make sure the level of HCG in my blood was decreasing as it should. I agreed to do it but didn't make the appointment on the way out.

There were two newborns in the waiting room, each accompanied by two exhausted-looking but doting parents; struggling to unbuckle them from their carriers, gingerly removing them from their tiny snowsuits. The babies were so fragile-looking and tiny.

I told myself I would call back, but I never did.

Two weeks went by. I'd been having a rough time of it. Scott was supportive, but he struggled to know what to do. For him, my being pregnant was an idea, but I already felt a person. He tried to discourage me from thinking of it in those terms, but he couldn't reason it away. I was despondent.

He encouraged me to do the things that normally made me happy: coloring with my daughter, writing, planning the wedding, practicing yoga, learning to code. Sometimes I went through the motions of these activities so he could feel like he was helping me. But what joy I felt was short-lived and weak. At the core, constantly threatening to bubble to the surface, was a black hole of depression so intense that it numbed me to any other emotion. The emptiness was all-consuming.

So when I got a call from my OB's office reminding me that they still wanted that blood test, I felt bothered. I was so over being poked and prodded and examined and only ever getting indifferent apologies and shrugged shoulders in exchange for my pained cooperation.

But I went in for the blood draw on my lunch break anyway and didn't give it another thought until I got another call.

The nurse on the phone explained that my HCG hadn't gone down, but had doubled. It wasn't elevated enough for them to think I was still pregnant, but it was high enough to merit more investigation. My OB/GYN ordered an ultrasound and three more blood tests.

I immediately sought the counsel of my most trusted adviser: Google. I gathered it could be a few different things with varying levels of severity. The least of which being a glandular glitch, the most severe being cancer, but I assumed that whatever it was, it could not be all that serious. It probably just meant more inconvenient and invasive prodding.

Wallowing aside, I did want to move on from this deeply traumatic experience, and I could not believe it wasn't over yet. It felt like a cruel joke to have to drag my sorry self back to that office full of babies, and pictures of babies, and pregnant women.

When I met with my OB on Monday, her regular demeanor was replaced by concern; my ultrasound was inconclusive. However, my HCG had increased even more over that weekend.

"It means that somewhere in your body, something is growing that is giving off this hormone. It's called Gestational Trophoblastic Disease, or Gestational Trophoblastic Neoplasia when it spreads from the uterus, at is appears yours has."

I blinked. Wait, what?

"It's cancer. And we need to find where it is."

The words reverberated in my skull.

That is not a word I use for my experience, I thought. That is a word for other people's illnesses — the unlucky few, for those others. To assume the word for myself felt wrong. That word did not belong to me.

GTD or GTN is the name for a few different types of cancer that develop from a pregnancy, and it is extremely rare. My doctor said it happens with approximately one in every 12,000 pregnancies. Most people who are affected had a molar pregnancy, which is when what develops is not actually an embryo, but a growing mass of cells missing some key genetic components. More rarely, it develops after a regular pregnancy or miscarriage (like mine). Tumors usually grow in the uterus, vagina, or cervix. Normally, it spreads to the lungs next, and if it is the aggressive type, it can also quickly spread to the brain. The good news was that this disease responds very well to a well-tolerated chemotherapy treatment and it is almost always totally curable, even when it is in late stages.

After my appointment, Scott called me for an update, and I tried to recount everything just as my doctor had said it, to his stunned silence. When I finished talking, he said, "You haven't said how you feel about this news."

"I don't know. How am I supposed to feel?" We sat in silence on the phone for a long moment. What a curveball. What a random, horrible, unlucky, surprise. "But," I said finally, "I think we will just have to assume it will be manageable."

If my cancer was to be managed, I became its manager. I answered my phone when unknown numbers called (I know — who does that?). I wrote down numbers, and names, and appointment times, and kept it organized in a folder that I always had with me. I followed up on lab results, and FMLA paperwork, and short-term disability claims. I faxed, and authorized, and requested records be sent to and from various hospitals, and doctors, and offices, seeking out every possible assessment from every possible specialist. I scoured the internet for similar stories and joined forums.

After the first oncologist we met with decided to "wait and see" with weekly blood draws because she "wasn't convinced" of my diagnosis despite the evidence to the contrary (still-rising levels of HCG, even after a D&C, and a chest x-ray showing two mysterious nodules on my lungs), I got motivated to find a more immediate solution.

I would not be the reason my cancer got worse. If that meant I had to do all this advocating for myself, then I was determined to do it.

The focus on seeking the best possible — and quickest — treatment was exactly the distraction from my grief that I was unable to find elsewhere. Cancer occupied not only my body, but my state of mind, from the moment I woke up until the moment I fell asleep, and even showed up in my dreams.

After calling in favors from relatives, friends, and even my high school boyfriend's pathologist father, I successfully secured an appointment at the Mayo clinic in Rochester, Minnesota, about three hours away. I was to meet with the best doctors at the best hospital in the country, if not the world.

As I rode to Rochester, I got a call from my OB; my last HCG count from the previous day was less than half what it had been two weeks before, without any intervention. My body was taking care of the invasion on its own! But I only felt relief for a split second. Then, surprisingly, I felt disappointment. I wasn't able to work out why I was so conflicted about this news for a long time.

My visit with the best gosh darn doctors in the country ended with a shrug and a bill. They called me "a quandary."

The way my disease presented itself was not typical. I had no visible tumors except for the spots on my lungs, but they weren't even sure about those anymore. They theorized it could be scar tissue from a previous infection like bronchitis or pneumonia (I have had both). They tossed around the idea of doing more scans, but in the end sent me home with orders to follow up with weekly blood tests at my OB's office.

As long as my HCG level keeps falling (and it is), they won't do anything to treat it. They say it is reasonable for it to take four to six months to return to zero.

Then we have to wait one year from that date before we can get pregnant again. They want to keep monitoring my levels to be sure there is no recurrence — and if HCG is present, they want to know they can and should treat it aggressively, with no concern about the possibility of me being just regular old pregnant.

I was extremely upset to hear that our plan to try to get pregnant again in the near future had gone the way of most unplannable things — with God laughing. It was yet another agonizing blow, after I'd already been hit so many times.

But even before I knew about this disappointing timeline, I was inexplicably bummed out. And I actually didn't figure out why until I sat down to write this.

Throughout this whole cancer ordeal, my friends and family have been so amazingly supportive of whatever I felt; nobody was uncomfortable with my feelings or struggled to know what to say to me. They didn't try to make me feel better, or insinuate that I shouldn't feel a certain way, because I was "so young," and "had so much time," and "it wasn't meant to be."

Nobody knows what to say when a person is grieving an invisible loss; People have a much easier time being supportive of a sick person. And I was no longer "sick enough" for all the kindness and generosity that had been bestowed on me. I was back to being just sad — too sad to be allowed.

My heartache over the miscarriage reappeared almost as soon as I walked through my front door following my trip to Rochester. It manifested in ugly ways: snapping at Scott over nothing, avoiding everyone and everything, and silently crying myself to sleep.

Right or not, planned or not, I wanted another baby — badly. I ached for it. I still do. I love being a mom, and according to my four-year-old, I'm the best mom ever (she is biased, yes, but extremely correct). My kid is a gem, and the world needs more great kids like her with great parents like us to guide them. And we have four-to-six-months-plus-one-year before we can even try to have one. But I think the hardest thing to accept, is that I am no longer in control of my own reproductive story.

But I guess none of us ever completely are.

I know it just kills Scott to see me still so heartbroken. But time will heal me. Even now, just two weeks after my trip to the Mayo, it is getting a little easier to move about the world without feeling like I'm on the edge of an emotional collapse. I still find myself in a daze of despair at least once a day. But slowly, it gets easier to manage; slowly, I have begun to remember that — oh yeah! — I actually have a happy life.

I have started to let myself wonder what we can do with this year that we wouldn't have been able to do if I was pregnant now or if I were to get pregnant right away after we get married. I'll be able to drink at my bachelorette party and wedding, for one (woot!). I'll be able to ride all the rides at The Wizarding World of Harry Potter when we go there on our honeymoon (I'm going to cry when I see Hogwarts, you guys). I can give all of my attention to my daughter while she is still little and thinks that I'm perfect (though I am far from it). And I've been looking into a career change over the past year or so, and now I actually have time to make that transition, which could change everything for our family.

I have every reason to look forward. But I still have to consciously remind myself of that fact.

I don't know if I will ever truly "get over" this, and even now we are not completely out of harm's way. My levels could start climbing again or stay at the same level for too long, and I'll have to snap right back into my role as cancer manager.

But for now, all I can do is appreciate this chance to catch my breath, imagine my future, ride out my grief, and simply enjoy my life with the people I love. I'm one of the lucky ones to have that chance. It may be difficult to remember sometimes, but I don't think I'll ever take it for granted again.