I never knew how badly I wanted to be a mother until the moment I was told my pregnancy was not viable. It hit me like a wave of emotion, a personal epiphany. I had never really given it much thought in my life – I knew that one day I would have children, but I hadn’t really considered how much it would mean to me, or how it would fulfill me as a person. I was aware of Max’s strong feelings about having a family, but I never understood it until I was pregnant. When I shared the news with him for the first time he didn’t seem to believe me. His state of disbelief quickly dissipated and turned into incredibly overwhelming joy. We held each other, laughing and crying, and shared in a moment that I will never forget. Without even knowing it I had mistakenly taken my ability to have children for granted. I didn’t appreciate it until it hung in the balance. I knew that what I wanted more than anything in the world was to have a baby, to hold them in my arms, and see them smile.
Although the removal of a molar pregnancy is not the termination of a developing child, it is still a loss. Even when an embryo is present, it does not have the opportunity to develop into a child. I, like most women, discovered that I was dealing with a molar pregnancy after the discovery and anticipation of being pregnant. Dreams, plans and hopes were cancelled all at once; it is still a significant loss. People tried to console me with statements like, “Well at least it wasn’t a baby.” That doesn’t help. It was real to us, I was pregnant like any other woman. To me, I lost my baby.
Once we were given our preliminary diagnosis, things moved very quickly. Within a week I was in the hospital preparing to undergo a D & C (dilation and curettage), a procedure to remove tissue from inside the uterus. Doctors perform dilation and curettage to diagnose and treat certain uterine conditions, to clear the uterine lining after a miscarriage, or remove a molar pregnancy in which a tumor forms instead of a normal pregnancy. My doctor recommended that I not wait to miscarry naturally since I was already past 10 weeks, and ran the risk of developing a form of cancer if I did not take immediate action. In other words, for my best chance, I didn’t have a choice: I would go through the procedure and begin my recovery. If the odds were against me, I knew I could potentially run the risk of never being able to have children if my treatment called for a hysterectomy. That was the worst case scenario I was given with regards to my reproductive health.
What makes this type of loss further different from a normal miscarriage or loss is the continued concern for my health. A hydatidiform mole (also called a “molar pregnancy”) is a form of Gestational trophoblastic disease (GTD) that arises when fertilization of an egg cell results in an abnormal pregnancy. 80% of molar pregnancies are benign in that they cause no further trouble after they are removed from the uterus. However, in approximately 1-4% of partial moles the molar tissue either spreads locally within the muscular wall of the uterus (called invasive mole) or spreads more widely to other parts of the body, most commonly the lungs (called metastases), which requires treatment. I thought that after my D & C I would be “healed”, and we could quickly move on with our lives and begin trying again. However, it was far from over, and only the beginning.
I had hoped that the procedure would go normally (I hoped for at least that) but when I came to, my doctor was there at my side explaining that something was off – she didn’t like the way it had gone. I was still a bit out of it, but I tried very hard to rouse myself and pay attention to her explanation. Unfortunately, it wasn’t much of an explanation because she wasn’t even sure of things herself. From what I gathered, there was abnormal tissue in my uterus that she was unable to remove, and she worried that I had already moved onto the next stage of Gestational trophoblastic disease: choriocarcinoma, or a placental-site trophoblastic tumor. When Max was finally allowed to see me, he told me it was hours later, and I realized the true severity of what my doctor had explained to me and considered how long I had actually been in surgery – it was then that I saw it didn’t go well at all.
Not only did I lose my baby, I now faced further complications – either choriocarcinoma or a placental-site trophoblastic tumor. Choriocarcinoma is a highly malignant form of GTD that spreads rapidly throughout the body and requires vigorous treatment. It may have begun as a molar pregnancy or from tissue that remains in the uterus following a miscarriage or childbirth. Choriocarcinoma is even less common, arising in only one of every 20,000-40,000 pregnancies. A Placental-Site Trophoblastic Tumor is a very rare form of the disease that arises in the uterus at the site where the placenta was attached. These tumors penetrate the muscle layer of the uterus and usually do not spread to other parts of the body.
In most cases of partial mole the diagnosis is made by the pathologist. I later found out that based on pathology, the genetic material was XYY (called Triploidy), meaning that two sperm fertilized one egg, diagnosing my condition as a partial molar pregnancy. A blood test was also done to look for a hormone called human chorionic gonadotropin (known as hCG or beta-hCG) which is also present in normal pregnancy. This hormone is an important test which will be used to determine whether the molar pregnancy becomes malignant, to determine if treatment is working, and to find out if the GTD has returned.
After my procedure, I really had no time to rest between the poking and prodding before I had to begin testing for human chorionic gonadotropin (hCG) weekly. I met with my new Gyn Oncologist immediately and began tracking the descent of my hCG levels. The goal in this case was to get my HCG down to less than 2; my first test result produced a beta-hCG level of over 290,000. I had a long journey ahead of me, months or even a year of recovery, if all went well and I did not end up having choriocarcinoma or a placental-site trophoblastic tumor as my doctor suspected. The oncologist was serious; even he acknowledged the fact that molar and partial molar pregnancies are so rare that little is understood about their treatment. Because of my extremely high hCG level it would take a minimum of 6 months to get to zero since hCG levels usually decline at about 25% each week. If the beta hCG level plateaued over three consecutive weeks, or re-elevated over two consecutive weeks, it would indicate that the molar pregnancy is malignant GTD (also called gestational trophoblastic neoplasia, GTN) and I would need to undergo chemotherapy treatment. More tests would then need to be done to find out if the cancer spread from the uterus to other parts of the body.
There were moments when I just couldn’t believe that this was my real life. All we wanted to do was get pregnant and have a baby – and this happened instead. I was facing so many possibilities, and none of them were the ones that I had in mind for my life – not right now, not ever. I put a smile on my face at work, acted like a zombie at home, and suffered frequent breakdowns when I was alone. People told me I was being strong and asked how I was able to put on such a brave face after all that was happening every day. That’s exactly what it was: a face. It wasn’t really bravery or courage, or even facing the truth. It was an act, because I knew I couldn’t lose it. What I really wanted to do was cry endlessly, scream, roll on the floor hysterically, and shut myself in a closet, but I couldn’t. I didn’t want pity or to be left alone with my thoughts. I didn’t want to be weak, but I mistook ignoring my feelings for strength. I was making it through this difficult time, but I certainly wasn’t doing it the right way.
So, I visited my Oncologist’s office weekly to have my blood drawn. The nurses were kind and knew my face and name after a few visits. After a month I didn’t need an appointment anymore, they simply bumped me up whenever I arrived, drew my blood, and sent me on my way every week. Every week for 8 months I went, getting my blood drawn from alternating arms to avoid inevitable bruising. For three of those first months I slowly but successfully was able to decrease my hCG level naturally, without needing chemotherapy. I had hoped to keep it that way – no one wants to face that scary “C” word. From 290,000 to 39,000, all the way down to 238 over the course of 10 weeks. But on the 11th week, my fears continued to come true: my level went up instead of down. The time had come that I wished and hoped never would. I would need to undergo chemotherapy treatment if I had any chance of recovery, future chance of pregnancy, or even living. At that point, I just had to close my mind off to all the possibilities, and simply do whatever the doctors and nurses instructed me to do. I was completely helpless and desperate to just get back to normal, whatever that was. I needed the best chance of gaining my health back, and chemo was the first step.
After this experience, I have been moved to create a Free Mini e-Course addressing Pregnancy Loss Recovery and the steps involved in navigating positive personal growth. If you’d be interested in this enriching workshop, please enter your info below and I will notify you when it launches!
Please visit this link for Part 3, the final post.
I have posted my initial beta-hCG blood results below for anyone who is going through this same thing to view. When this was happening to me, I searched and searched to no avail for firsthand results of others who were experiencing this to compare my progress to. Although every case is different, this is the course that my journey took for the first three months.
1/8/2015 -bHCG 290,000
1/15/2015 – D&C
1/24/2015 -bHCG 32,000 (9 days post D&C)
2/4/2015 -bHCG 39,000 (increase)
2/10/2015 -bHCG 35,202 (-9.7%)
2/16/2015 -bHCG 29,527 (-16.1%)
2/23/2015 -bHCG 16,900 (-42.7%)
3/2/2015 -bHCG 9,259 (-45.2%)
3/9/2015 -bHCG 4,298 (-53.5%)
3/16/2015 -bHCG 2,306 (-46.3%)
3/24/2015 -bHCG 832 (-63.9%)
3/31/2015 -bHCG 389 (-53.2%)
4/6/2015 -bHCG 238 (-38.8%)
4/13/2015 -bHCG 148 (-37.8%)