March 17, 2017, was a good day. It was a great day, actually. It was the day when I woke up with that little suspicion, charted my basal body temperature (BBT), and saw it hadn’t dropped yet, and dared to pee on that stick. It was very faint, but the second line was there.
It was the first time I had ever peed on the stick and seen a positive result. It was not the first time I had peed on the stick in general, mind you, and usually I was hoping for the opposite, so to see that faint second line was exhilarating and terrifying all at the same time. But it was a good day. It was a Friday, and I went to work and spent the whole day smiling. If only I had known… but I had no idea I was about to walk into my own personal nightmare. I had no idea that the baby I thought was growing in my uterus, the baby I had already started to imagine and think up names for, was not a baby at all.
That feeling of happiness, it lasted for 2 weeks. In those 2 weeks, I had managed to see a gynecologist to confirm the pregnancy, schedule an early ultrasound, take my growing baby to see Beauty in the Beast, sign up for every pregnancy app I could find, buy and read a good portion of What to Expect When You’re Expecting, figure out my pregnancy workout regimen and diet, and plan the nursery with my husband. It may not seem like a long time, 2 weeks, but they became the basis for everything after, and I still remember them fondly.
My husband and I were watching TV and I had gone up to the bathroom for one of my customary pregnancy pee breaks when I saw that I was spotting. It was not a lot, and it was dark brown blood. Of course I spent the rest of the night (and the next 2 days) browsing Google and all those pregnancy apps I had signed up for to try and find out if this was normal. Apparently, it was actually not out of the ordinary to have some spotting between 6 and 7 weeks, and this was plenty for my husband to not be concerned, but I just knew that something was wrong. I called my doctor, and since my ultrasound was scheduled for a day and half later, she told me to just go ahead and do that.
Waiting for the ultrasound was excruciating. The spotting mostly stopped by the next day, but the following day it started again and was slightly more intense. I had been trying to save my days off, so I hadn’t taken a day off work during my ultrasound. I went over to the hospital around 3 p.m. and met my husband there. They were running incredibly behind, and I distinctly remember sitting there, worrying about what work would say when I didn’t come back from my “dentist appointment” on time, while imagining I could feel the blood drip down. I wondered what was happening. I wondered if I was having a miscarriage. It was one of my biggest fears, with a pregnancy, and I wondered why it couldn’t be easier for me.
They finally called us in, and I climbed on that table. The technician walked us through what she was going to do and said she would show us on the monitor if she saw a baby. She put the ultrasound probe up there and didn’t say a word. She took a bunch of photos as she moved it forward inch by inch. I hadn’t looked up what 6-week ultrasounds were supposed to look like, so I didn’t know what I was looking at. Another doctor came in and they continued along the same vein. I remember biting back my anxiety, assuming it was bad news since they didn’t say a word, but holding my fears back with hope. Hope can be a cruel thing.
When they finished, they removed the probe, turned to us, and said, “So, do you have any questions?”
It was so blasé. I responded in kind.
“Yeah. Is there a baby in there, or what?”
This is the moment at which I stopped writing. The moment at which I stepped away for a long time, weeks, because I could not face the edge of this precipice again. I could not step over it, because I think you guys already know the answer, don’t you? Do I really need to say it?
I wish I could skip over this, shrug it under the rug, and pretend I am invincible. Invisible. So that all my fears can’t find me. I wish that I could put on my invisibility cloak, spin back my time-turner, go back to that moment in time somewhere in mid-February and say to myself, “Not this time. Not this month. Wait just a moment. Wait just one more month.” Maybe then everything would have turned out differently. Maybe instead of sitting here, as September ends, and clutching my empty memories while looking at the future with fear, I would be holding my pregnant belly. Maybe I would be 6 months pregnant today. Maybe 5 months. Maybe even 1 month, and full of excitement. Maybe I would be standing at the foot of an amazing adventure, one that I chose, instead of the one I currently face, which came to find me and dragged me along despite my feelings.
But invisibility cloaks and time-turners aren’t real. I’ve learned this year that we are stronger than we think. I learned it as I faced my biggest fears, one after the other. After the other. And if this helps just one person, then I will solider on, and I will share this story.
So in the end, you already know, but of course there was no baby. That’s not what this story is about.
They said it looked like a large blood clot was in my uterus. The sac was abnormal, and there was something that maybe looked like a fetal pole but they really couldn’t be sure, but either way, there was definitely no baby.
They sent me back to my doctor’s office, where she did some blood work and told me that basically it was a missed miscarriage and my options were either to wait it out, take some drug that would induce an actual miscarriage, or to have a D&C to remove everything. She also referred me to a different gynecologist because they apparently didn’t do obstetrics in their office. I had no idea what to do, so we left, went home with plans to think about it, and I spent the train ride crying.
We set up an appointment with the new doctor for that weekend, and the rest of the week was pretty uneventful with the exceptions of deleting all those pregnancy apps, having to tell the parents and few friends whom we’d confided in about the pregnancy loss, and finally my doctor calling me back to let me know that my hCG levels, aka the pregnancy hormone that measures how pregnant you are, were too high to take the drug to induce a miscarriage. In fact, they were 95,000. I didn’t know this at the time, but the number was ridiculously high for someone who was only 7 weeks pregnant. I googled it of course, came across all the appropriate results, and decided none of them made sense or could be the reason because those pregnancy complications were rare, insane, and just couldn’t happen. My doctor was sure that it was a blighted ovum with a blood clot after all, and you would be hard pressed to find a person who would advise you to self diagnose yourself on Google. In fact, don’t do it.
But regardless, time moved along. Saturday came, and we liked our new doctor. I’ll call him Dr. B. He did another ultrasound, informed us that a lot of stuff was still up there, and recommended we do the D&C. By that point I had decided it would be too traumatizing to watch it happen naturally, and I was all for it. I look back now and, considering everything, I am beyond thankful for this decision.
The D&C was scheduled for the following Friday, and I remember taking the day off work and showing up there, full of anxiety, my husband faithfully at my side. I am an avid Grey’s Anatomy fan, but when I step into an actual operating room I find it incredibly terrifying. The room is open and bright. And cold.
They took my clothes and gave me a gown, and my husband and I waited for ages in a little empty room off the operating room. I sat there, with no shoes, this flimsy little sheet of cloth my only protection from the world, until Dr. B finally came by. He looked at my chart, and at my latest blood work, which I had done the day before, and informed me that my hCG levels, instead of staying the same or going down, had gone up to a whopping 225,000.
I cannot even tell you how I felt when he turned to us, looked at me, and said, “Well now I think you might have a molar pregnancy.”
I had read it on Dr. Google, you know, just days ago. It was one of those things that I dismissed as over-worrying. I do it all the time, and this kind of stuff doesn’t actually happen.
Except that it does.
I guess I had memorized more about it than I thought, because I turned to him, terrified, and I said, “Isn’t that like cancer, or something?”
And he said, “No, not really.”
And then he did my D&C, and that should have been the end of that chapter, but it was the fulcrum, the turning point, and the beginning of everything else.
I think by this point, I have skirted around the topic enough. We have played enough guessing games. A complete molar pregnancy occurs when an empty egg is fertilized and begins to grow out of control into a mole, or tumor. It is marked by very high hCG hormone levels, and later on in the pregnancy by a large growth with grapelike clusters in your uterus. I suppose that mine never got that far along. A D&C is typically how a molar pregnancy is treated, but if hCG levels rise again after, it means your mole is not benign, but invasive. An invasive mole can continue to grow after a D&C. It can spread to other areas of your body and grow there, like a cancer. It can actually become a cancer, choriocarcinoma, but this is incredibly rare. Invasive moles are also rare: only about 20% of molar pregnancies become invasive after a D&C. Molar pregnancies themselves are rare, honestly. Only around 1 in 1,000 people will have a molar pregnancy. They are rare, and random, and happen for no particular reason. All the odds are in your favor to not have one, but what do percentages really mean, when you’re staring one in the face? When you are standing at its door, and it is throwing out the welcome mat?
Follow up for a molar pregnancy involves the weekly monitoring of your hCG levels to make sure that they don’t rise again. When the levels are back to normal, below 5, the monitoring becomes monthly and continues for 6–12 months. During those 6–12 months you can’t get pregnant, because the rising levels from a pregnancy could potentially hide a rise in levels from the mole.
When Dr. B told me that I would have to wait a year to get pregnant again, I thought it was the worst news I could get. But I think you all already know, that if that were the case, you would not be here reading this. As it is, it only took 3 weeks for my levels to rise.
So I will skip over how upset I was when Dr. B confirmed that I did in fact have a molar pregnancy. I will not talk about how hard it was to wait for my numbers to come back during those 21 days, and how absolutely devastated I was when Dr. B told me that after dropping to 13,000 they had gone back up to 18,000 in the space of a week. I will not dwell over how that appointment was the day before my husband and I had planned to leave for California and eventually Hawaii for our wedding anniversary trip—a trip that we had been planning for months and that I had been looking forward to for probably my whole life. I try not to look back on how I went home that day, unpacked my suitcase, cancelled our AirBNBs, our car rental, and plane tickets, and how I went to bed crying, worrying, and wondering what was going to happen to me, while my doctor set up an appointment for me with a gynecologic oncologist. I never thought it would happen to me. I still have moments where I don’t, can’t, believe that this is real.
My new doctor, Dr. P, had a new name for my condition: gestational trophoblastic neoplasia (GTN). There were new ultrasounds and CT scans to get some insight into what exactly was happening with the GTN. There was a small new growth in uterus, which I had been prepared for, but because it seems like a molar pregnancy is the gift that keeps on giving, there were also numerous nodules in my lungs. And just like that, my GTN was Stage III. Just like that, my only options were narrowed down to chemotherapy. The day that we were supposed to fly from LA to Maui, I walked into the infusion center with my heart buried in my sleeve and got my first shot of methotrexate.
It has been 4.5 months since that first injection. I have watched summer pass by while I counted down the days—to my next shot, my next blood draw, my next hCG number. I have cried so many times that I have lost count of the tears. I have ended up at the ER at 3:00 in the morning because I lost so much blood that it made a puddle on the floor. But I walked on through it all. I went to work, and I made time for my friends and my family. I couldn’t go away, so I went to the beach. I biked in the park. And through it all, I carried this with me. Every second of every day, because I cannot leave it behind, not even for a moment. Almost.
I have had ten cycles of methotrexate. Forty injections. Every other day, for every other week. I wish I could say that in this moment in time I have achieved my goal and that my levels are negative. But I am not there yet. It took seven cycles of methotrexate before my levels began to plateau, and another three before my doctor admitted it. I have got down to 226, which seems like an unparalleled achievement when compared to 225,000, but when you are trying to get to less than 5, and every number and every minute count against you, that 226 can seem like a mountain. It can seem like winter, coming with a dragon, with only the Methotrexate Wall in the North to hold it at bay. And that wall is crumbling.
Dr. P did not start my eleventh cycle of methotrexate today. On Monday, I will be getting a port, and next Friday I will be starting the next therapy, Act-D, and I am terrified. And I hope beyond hope that it has more success because I don’t know how much longer I can bear this load. But I suppose that I will bear it as long as I have to. I will probably bear it past my due date on November 21, and maybe even into the new year. Perhaps it will follow me to my 30th birthday, in January. And I pray that sometime after that I can grab hold of that elusive negative number. I pray that my countdown of a year can begin, that my body will sustain it, and that someday in the future, I can find my own rainbow. If I can find the courage to carry it.
I have found a lot of courage this year. I have dug it out of places that I didn’t know existed. There was always a part of me that walked through life afraid. I can make a long list of my biggest fears, and they would include things like: having difficulty getting pregnant, having a miscarriage, getting a debilitating and life threatening disease, getting cancer, needing chemo… the list goes on. There are a lot of things that I am afraid of. This year, I have faced some of my biggest fears, back to back, and all at once, and they did not destroy me. I have carried their burden, and found myself equal to it.
I am walking forward now, into an uncertain future. This story does not have a happy ending right now, but I hope that it will. And hope is all that we can ever hold on to.
For more of Rina’s story, read her ongoing blog at A Song of Silence.