Thursday, July 9, 2009

Complications Part II

At the beginning of last week, I got a call from the doctor who did my D&C. She had received my results from pathology. This was a surprise. I didn't know they had sent a tissue sample to pathology - they don't tell you if they do since it rarely turns out to be anything worrisome. But my results were abnormal. She told me that I had had a partial molar pregnancy. In a nutshell, this is a "genetic accident" that occurs when two sperm fertilize one egg. The result is a placenta that behaves more like a benign tumor than a pregnancy. The treatment is D&C, which I had already had when I found out my diagnosis, and monitoring of hormone levels afterwards to make sure that all of the tissue has been removed.

The partial molar diagnosis explains why my body behaved like it did - why I felt so sick and exhausted despite a non-viable pregnancy and why I didn't start miscarrying on my own earlier. Partial molar pregnancies often result in higher levels of HCG, the hormone measured by pregnancy tests, resulting in more nausea and other unpleasant first-trimester symptoms. My body was responding appropriately to the high hormone levels, which might have been abnormally high, though my levels were never tested while I was still pregnant so I don't know for sure.

The main danger is that partial molar pregnancy can be persistent, and if some tissue or even a few cells remain in the uterus, you need to be treated with low doses of a chemotherapy drug to make sure that it doesn't turn into cancer. This is why my HCG hormone levels need to be tested (a blood test) once a week until they drop to zero and then once a month after that to make sure they stay there. A rise would indicate remaining tissue or cells.

I'm finding it difficult to explain this condition in a way that doesn't either underplay or over-dramatize it. I'm also noticing that information provided by my doctor and the Internet all vary wildly, and there's some very scary information online (even from reputable sources), so I'm going to provide this link from the Cleveland Clinic for those who want to know more. It's a concise and, from what I can tell, fairly accurate explanation, except that it makes it sound like HCG levels are lower in women with partial molar pregnancies whereas everything else I've read and heard indicates they are higher than in normal pregnancies.

My situation is different from the Cleveland Clinic's description because I was not diagnosed via ultrasound. In fact, I had two ultrasounds before my D&C, and no one seemed to suspect molar pregnancy. It was only because my doctor sent tissue to pathology that we knew. This makes me think this kind of pregnancy is under-reported, and plenty of women miscarry on their own, go on to get pregnant in the next 1-3 months after their miscarriage, and never know they were at risk for the scary stuff described in detail on the Internet but downplayed greatly by my doctor.

It has been a stressful time.

I have been trying to process this new information and understand this condition and what it will mean for me and for our future as a family. The Cleveland Clinic says that women need to wait a year before trying to conceive, but six months is also a standard wait time, and that is the number my doctor told me, adding that the amount of time could be revised either way. So for now, we are hoping for six months at the longest.

The first bit of good news happened later in the week, when, after much waiting and anxiety, I got the result from my first HCG hormone level blood test. My doctor had told me that we were hoping for a number under 1,000 (hormone levels in a healthy pregnancy can get up to 20,000 or even 250,000 in the first trimester). Given the huge reduction in my pregnancy symptoms, I was hoping for a low number. In my heart of hearts, I was hoping for a number that seemed impossibly low, like 50. And I got it - my number was 49.7! My relief was palpable.

The past month has been so emotionally exhausting. Sometimes I feel emotionally battered, like I've been run over by a truck, which then backs up and runs me over again. Every time I feel like I'm almost adjusting to the news I've received, I get another surprise, and - bam! - the rug is pulled out from under my feet and I've landed squarely on my butt again. In terms of the partial molar pregnancy, most likely everything will work out without any further intervention, but in my sad and tired moments, I feel the fear of having something hanging over me. The idea of waiting at least an extra four months beyond what we thought we'd wait before trying to get pregnant again has been a big adjustment for me. Six months might not sound like a lot, but to me, right now, it is. I am quite aware there's no guarantee on the timing of trying, of getting pregnant, or of having a healthy pregnancy. It's a difficult mental shift to go from thinking you're going to have a baby by the end of the year to having to go back on birth control because you can't get pregnant until your doctor gives you the okay.

At this point, a month after we found out the pregnancy wasn't progressing, I am up and down emotionally. Some days I feel relatively normal, relieved that the miserable physical symptoms I endured for that first trimester are over. Other days I feel like there's a cloud of sadness hanging over me, tinging the world, if only slightly. And occasionally (less frequently than I might have imagined), the grief erupts and I sob until my eyes can't produce any more moisture. The surprises I keep getting seem to bring up waves of grief, fear and overwhelm.

I am aware of the silver lining to my situation. In fact, I thought about making a list of them, to remind myself. The biggest one is that I live in an age when ultrasounds, tests and procedures can diagnose and effectively treat this condition. I have an ob-gyn who I really like and trust. She is the doctor who performed my D&C, an Assistant Professor at UCSF, a personable and non-alarmist woman who answers her pages quickly. Not to mention one of her colleagues is a world expert in molar pregnancies. I have my dear friend Sophia, an ob-gyn in Seattle, who I can call for second opinions and a more emotional brand of comfort. And I have an incredibly supportive husband, family and network of friends. There are other silver linings too, like being able to soak as long as I want in the gorgeous hot springs here in Steamboat Springs, Colorado.

But what I have learned through this process is that grief is a very individual process. I am feeling my way through a maze of thoughts and emotions and physical sensations. The journey is called healing. It's not a straight line.


  1. I've never posted on a blog before, but my situation seems to mirror yours and I wanted to thank you for writing it. It was just a great comfort to read.

  2. I have yet to meet in person another woman who's gone through a molar pregnancy. The anxiety and the waiting make it different from a "regular" miscarriage, not that those cannot be difficult enough. I wish I could tell you that, seven months after my D&C, I'm "all better." Medically, I am. And emotionally, I am much better. But I'm still sad about it. I still miss the child who wasn't. My best advice is to take care of yourself, do what you need to do, and be compassionate for yourself.