Living With My Molar Preganacy
I have tried many times to write about my experience over the past 9 months. Paragraphs have been written, read, re-read and rewritten. Nothing that I can say is ever going to express the feelings that I had during and after having my first miscarriage, my third baby. I read somewhere that it helps the grieving process to name your unborn angel…I named my baby James. I lost James at 5 weeks. My third baby was real and my grief is too, I will never stop missing my sweet baby James. My two living children and I pray for him every day, the patron saint of our family.
Nothing that I can say will explain the way that I felt when learning that I was losing a second pregnancy. Everyone told me that the likelihood of losing another pregnancy was slim. I imagined how silly I would feel for worrying so much, when I was holding my fourth baby in the hospital in 9 months. Still, I couldn’t help but worry. I wanted this baby so much.
My pregnancy following the miscarriage seemed pretty textbook, I felt horribly nauseous for a few weeks, was exhausted and had terrible headaches. I didn’t mind it. I welcomed the discomfort because it reassured me that my pregnancy was moving along. Around 6 weeks I noticed some spotting and we decided to get in to see the doctor. It was a terrible day, there was a blizzard and my husband and I drove an hour through it to get to the office. They did a blood test and sent me home. I got a call a few hours later saying that my hormone levels were great for 6 weeks and that everything was probably ok. We were so relieved! Everything was going to be ok, our baby was just fine.
When I was 8 weeks pregnant, I went in for my first prenatal checkup. I had been experiencing cramps since the very beginning and I was anxious to see my baby’s heart beating. The midwife didn’t think that it was necessary but, after some insistence on my part, agreed to schedule an ultrasound in the city. The next day I drove into the city with my kids to get an ultrasound.
The woman came into the room and began the ultrasound. I remember her just silently searching the screen as she moved the wand over my stomach. Then she asked me if I had been in any pain. I knew then that something was wrong but I could not begin to guess just how wrong it was. She continued searching and just said, “There’s nothing in there.” I remember crying as the woman tried to comfort me, telling me that I should be happy that I have two beautiful children, that I should be happy that there was “just a bunch of tissue, no baby”. Then she left to schedule an appointment with my doctor for later that day. I called my husband, who would meet us at the doctor’s office. I called my boss, who told me to take all the time that I needed and I called my mom to hear her voice. All the while trying to hide my hysterical crying from my children, who had been so excited to see their new baby’s heart beating.
We met up with my husband and went in to get some concrete answers from the doctor. We didn’t get answers that day and wouldn’t find them until we stumbled across them on our own, weeks later. The thing about the disease that I have is that no one seems to know it completely, it’s one of the things that makes it so scary. Different doctors will tell you different things. The nurse who called me to confirm my illness couldn’t even pronounce it. She stumbled over the words then waited for my reaction, as if I would have any reaction at all other than terror, facing an illness that no one seemed to know anything about.
I will skip over my multiple doctor appointments following the ultrasound and share my hard-won knowledge. I had GTD. That stands for Gestational Trophoblastic Disease, also known as a molar pregnancy. There are two kinds, a partial molar and a complete molar. A partial molar contains genetic material and a complete molar doesn’t. I had the rarer of the two, a complete molar. An empty egg was fertilized and my body treated it like a normal pregnancy. In a normal pregnancy, however, the fetus acts as a sort of homing device for the trophoblastic cells, keeping them confined to the uterus. In a healthy pregnancy, these cells provide a hospitable home for a fetus. Without an actual fetus, these cells can invade not only the uterus, but the rest of the body, usually metastasizing in the lungs first. It is because of the way these cells invade that it is considered a rare form of cancer.
Since these cells produce the pregnancy hormone, HCG, doctors can determine what’s going on inside of the body with a simple blood test, measuring the HCG levels. At 8 weeks pregnant, my levels should have been at 12,000, they were at 200, 000.
Not only had I lost another pregnancy, I was looking at the possibility of having cancer as well. I had no idea that GTD was a thing. I had never heard of it before that first terrible day in the doctor’s office. I was also given conflicting information. Thanks to my mother, my husband, and an amazing online support group, I was able to get a clearer picture of what was happening inside my body. It felt like a weird, hazy reality. I was still trying to cope with my first miscarriage and now I had the possibility of cancer and chemo ahead of me.
My doctor told us that there was an 80% chance of a D&C eradicating all of the cells and scheduled it the following week. My chances of cancer were higher because it was a complete molar and because my hormone levels were so high. He was also worried that I would hemorrhage during the procedure.
I remember waking up after the D&C and feeling free. I was actually happy. I had felt so terrible for days, knowing that there was a tumor growing inside of me. What I had thought was a baby, what my body and my doctors had thought was a baby, was actually a potentially malignant tissue mass, or tumor. It was disgusting to me. I couldn’t, and still cannot wrap my mind around that. I welcomed the sickness, the discomfort, as an assurance that I had a beautiful baby growing inside of me, only to spin completely around and want it out. “It” was not a baby. I had made sure that it wasn’t. I had gotten a second opinion prior to the procedure to make absolutely sure that the doctor wasn’t wrong, that there was no way that a baby could be in there. It was not a baby and I hated it. I wanted nothing more than to be rid of it and to move on, trying to heal as best I could.
Healing mentally after my procedure was impossible. I had to get a blood test every week to make sure my hormone levels were dropping. I could not seem to find my new normal when I knew that the tissue could be growing back. I anxiously looked forward to my blood draws every week, hoping and praying for fast drops. The goal was to get my numbers from 200,000 to less than 3.5, as that was considered negative at my lab.
About a month after my procedure I was starting to feel good physically, maybe even starting to settle into my new self. I had gone in for my fourth blood draw that morning and I was waiting for the results. Usually a nurse would call but this time my doctor’s name showed up on the caller ID. My numbers had gone up. I was the 20%. It was malignant. I couldn’t think, I couldn’t breathe, I had desperately wanted another baby but instead I got cancer. I called my mother and she came over right away. I had such bad stomach cramps from the anxiety that I couldn’t stand up straight. She was my saving grace that day, helping me with my children and helping me to keep my head on straight.
I was referred to an oncologist in the city. My mother came with me and asked all of the questions that I couldn’t get out, writing down the answers so that I could remember them. Cancer was a big scary word, now that it had become my reality, I was paralyzed. All I could do was pray that God would heal me and do the best I could to help my body heal itself. My oncologist wanted to begin chemo right away. This disease is incredibly curable, even more so with an early diagnosis. After quite a bit of insistence on my end, he agreed to try a second D&C first. There was now a 30-40% chance of eradicating the rogue cells completely and avoiding chemo all together.
The best that I could do to help myself became a lifestyle change. It started with a second D&C to try and get the rest of the tissue. Then I did a complete diet and lifestyle overhaul. I went vegan overnight. I cut out all sugar and animal products. I only ate salad and drank juice and smoothies for a few weeks. I drank lemongrass tea and diffused essential oils designed to balance hormones and cleanse the body. My mother did all of the research for me at the beginning and even did the first big grocery shopping. She had me watch all of the videos by Chris Wark aka “Chris Beat Cancer”. I tried my best to cut out any toxins found in household supplies. It was hard work but with my husband’s support and my mother’s help, I did it. I also joined an online support group of amazing women who were going through the exact same thing. GTD is rare, only 1 in 1,500 will get it. After having the disease, the chance of reoccurrence with another pregnancy becomes 1 in 100.
Recovery after the second procedure was painful and slow. I felt as though my body was taking too long to heal. I was sure that it had failed me and that the tumor was growing back. Even before this I had struggled with severe bouts of anxiety and I did not feel mentally equipped to deal with what was happening. I analyzed every last symptom until I made myself crazy. I called my oncologist’s office so many times that the nurses and I were on a first name basis. I went for long drives alone so that I could scream as loud as I wanted and cry without anyone feeling sorry for me. I developed a physical aversion to everything surrounding pregnancy. I had so much anger and was so envious of women who were pregnant. I had no sympathy when pregnant women would complain or talk about how much they hated being pregnant when every part of me ached to feel every pain and discomfort that they felt.
Let me pause here to say that, through this experience, I have found that society chastises women who mourn a loss when they already have children. I cannot count how many people have pointed out my two healthy children as I am trying to grapple with my grief. I love my children and I thank God for them every day. They do not lessen the pain of losing a baby or a pregnancy. The desire that I have to hold a baby that I have lost is not lessened by the daughter or son that I hold. I cannot explain that feeling in any way. If you have lost a child and have living children, I need not say more, you know all too well what I am talking about.
I slowly came to the realization, with the help of a great therapist, that I was going to feel what I was going to feel and whatever I felt was ok. If my grief made me feel sick, that was ok. If I was feeling thankful to be alive, that was ok. If I was happy, sad, angry, envious…that was ok. It wasn’t bad, it wasn’t good and I could accept it as it was, for what it was. What a monumental relief it was to remove my constant judgements of myself and allow myself to process what had happened.
I reached negative six weeks after my second D&C. That was about a month ago. Some women reach negative within weeks, some don’t reach it for months and in the most tragic cases, some never reach it at all. There is no baseline for normal because everybody handles this disease a different way. There are a million different symptoms that could indicate a rise in HCG levels and those same symptoms could also indicate that the hormone is going down. This is where my support came in. I cannot remember how many times I posted to the online support group that I’m a part of. I asked questions about symptoms, vented my frustrations and shared my pain. Each time I received an outpouring of love from women who truly understood what I was going through. I could also offer support. It gave me an opportunity to make something good out of this bad thing that was happening in the only way that I could at the time. I made a great friend through that group, Anna. We would check up on the other when our blood draw results would come in. Since she lives across the country, we decided that we would go out to celebrate when we both hit negative and facetime over a drink. We pray for each other every day and share with each other our good and bad days alike.
My husband was my biggest supporter through it all. He has seen the good, bad and ugly and still loves me so much. He has sat with me through countless panic attacks, bouts of rage and moments of deep sadness. He has given me space to grieve and cope in my own way. I have realized just how much we need each other, how important he is to me and I am to our family.
Today marks the first full month of being back to “normal”. I wanted to celebrate when I got down to less than 3.5, but I was just too tired. I have been so emotionally and physically drained from it all. I am exhausted but so thankful. We have been through something straining on our entire family and we came out of it, battered but undefeated. Thanks to God and the overwhelming love and support that I have witnessed, I am healthy again.
I don’t know why my levels went down. I don’t know why this happened to me. I don’t know why I lost this pregnancy or the one before it. Here is what I do know…there is a deep grief that will never go away. I have come out of this more patient. I am so thankful for my family. God’s love is great. Pain brings people together. I am my greatest advocate. I have developed a much stronger sense of my self-worth. If next time I am the 1 in 100, I will know what questions to ask. I will know that I deserve the answers. I will know that it was not my fault. I will know that God is with me, every step of the way. I will know where to find my support. I will not have to be strong for everyone else around me. I will not know where or when or how I will get through my emotions, and that is ok. I now know how strong I am and what I am capable of.
About the Author: Sarah Surette
I am a stay at home mother of two spirited, young individuals. My days are filled with love, laughter and a desperate attempt to hold onto my sanity. I grow through writing and am building a blog in which I document my winnings, failings and everything in between. Happy reading!
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