Debbie

I found out I was miscarrying on February 22nd (8 weeks along). I was scheduled for a D&C on February 27th. That went fine. I sat around and took it easy for 4 days, and had hardly any bleeding. The following Sunday, however—OH MY GOD! I had done quite a bit of walking around and going places because had I thought I was fine. I started to cramp up and bleed like I have never bled before. I experienced painful cramps that made me lay down for the rest of the day. From that day on, I bled heavily and had huge clots pass through. I thought this was the result of doing so little in the days after the D&C. I let it go and didn’t think much of it.

On March 8th, my sister had her baby. Leaving the hospital that night, I felt very lightheaded and almost sick. My knees buckled and I almost fainted. I now know why: it was because I was losing so much blood and had become anemic. I rested through the weekend and called my doctor’s office on Monday. They had me come in for an internal ultrasound, during which they found tissue still in my uterus. They scheduled me for a sonohist (never heard of it before) the next day.

On March 12th, the ultrasound showed clot upon clot. A sonohist is not a pleasant procedure, I will tell you that! They found the reason for my constant bleeding and clotting and removed it; I believe now, although it has not been confirmed, that what they removed was actually the ‘mole.’ My doctor put me on methergine (I think that is the way you spell it). It made my uterus contract in order to keep clots from forming again. She said that if that didn’t work and I began to bleed and clot again, another D&C would have to be done. I went home then, to live my life for another few days, until that Friday when I was to go back to the doctor’s for another ultrasound to see if anything had formed again.

On March 15th, the ultrasound looked good. There was only a little bit of debris left in my uterus, which the technician and my doctor said would come out on its own in a few days. She sent me down to have my beta HCG levels taken at the lab and then wanted to see me back in her office that next Friday.

On March 22nd, my hell began. My HCG level was 3,400. Another internal ultrasound was done, and not only did the technician find something again, but it was even larger than expected. The mass was 3/4 of an inch by 1 inch. “For something to grow that fast in a week could not be good,” the tech said. I thought to myself, “This is just fantastic! What else could possibly go wrong?” Little did I know that plenty more was just ahead. I must have sat in that room for at least 30 minutes before my doctor came in to talk to me. I didn’t know what to think. I knew I couldn’t be pregnant, so what was it? She finally came and told me I had what was called a molar pregnancy. I told her I had never heard of that before. Her reply—and I love this one—was, “not many doctors know much about this either.” This made me feel just great! She came right out and said, “you will need to start chemotherapy treatments as soon as possible. I’ve set you up with an oncologist who is familiar with this and he is waiting to see you.” Chemotherapy, me? I had never thought that word would be said to me—ever! I was sent back down to the laboratory for more bloodwork; this time not only were my HCGs checked but a liver panel as well. I was also sent to get a chest x-ray to make sure no metastases were forming on my lungs. I didn’t know yet whether I had had a complete or partial mole or even if it was cancerous, but the chemotherapy treatments began on March 25th.

That day, the results from my lab work were in. My HCG had risen to 5,500. Granted, it was still low, but clearly it was rising. With what I had learned about how moles can turn for the worse and spread at any moment, I was so happy to be on the methotrexate. I received the shot every day for 5 days. My body seemed to handle it pretty well except for the immediate feeling of nausea 5 to 10 minutes after the shot, the lethargy I felt all the time, and some problems with my intestinal tract. I had thought it would be worse–after all, we are talking about chemotherapy here. I was prescribed Stanford Magic Mouthwash to keep mouth sores (stomatitis, from the chemotherapy) from forming.

My oncologist had sent my lab work from my D&C down to a pathologist in Los Angeles for testing. The doctor thought that my miscarriage likely had never been a baby but rather a mole, and that the placental tissues were never completely removed during the D&C. Thus, the mole had formed again but more intensely. We were waiting to hear back from the pathologist with a more definitive diagnosis.

By March 29th I had completed 1 week of treatment. My oncologist (two more words I had never thought I would have to use in my lifetime) had told me my treatment would likely be short: 1 week on, 1 week off, and then a last week of treatment. He had also scheduled me for blood work every Monday for 10 weeks to check my BhCG levels, liver panel, and blood and platelet count. The doctors mentioned that there was a chance this could turn into choriocarcinoma, in other words CANCER, which would have to be treated with multidrug chemotherapy. But because I was not at that point yet, we hadn’t discussed it further. I was only 29 years old and had one child already—a 2.5-year-old boy named Raymond—and I wanted to have more children! The idea of having to do more chemo seemed to be going too far.

The first week of April, I had more blood work done, and my oncologist called me at work with the results. My levels had risen another 2,000 points to 7,010. The rise in the titer caused some concern, and he scheduled me for a full CT scan that afternoon to make sure nothing had spread to any part of my body or, more importantly, to my brain. I wasn’t feeling very positive anymore, not even scared, just mad. The CT scan came back clear; neither the oncologist nor the radiologist saw anything other than an enlarged uterus (a normal uterus for a nonpregnant woman is 7.5cm X 5cm. Mine was 8cm X 5cm). But the mass inside my uterus was 3cm in diameter. My doctor tried to encourage me, saying everything should be ok and that I was still at low risk. The reason for the rise in HCG, he said, was due to the chemo killing the mole (tumor). To cover all bases, however, he wanted to discuss the possibility of multiagent chemotherapy and/or hysterectomy in the event that the mass became choriocarcinoma. He wanted me to have more blood drawn on Friday to check my HCG. As you can imagine, that Tuesday through Friday was hell on my imagination. I immediately went to the Internet and found everything I could on choriocarcinoma. I discussed the issue with my husband. We didn’t want me to have the multiagent chemo. Not because I would be sick all the time, lose my hair, or risk having the cancer go somewhere else in my body, but rather because we didn’t want our son to see me go through the treatments. As badly as we wanted more children, we decided I would just have a full hysterectomy if the worst happened. That Friday, I had my blood drawn in the morning and requested the labs be done STAT—at the request of my doctor. I couldn’t go through the weekend wondering my fate. When the results came back I was at 4,237—my levels had finally dropped! I was so happy I cried. I was to continue with the methotrexate until my levels hit zero, which was fine with me. The thought of getting sick on more-intense chemo or of having a hysterectomy weighed too heavily on my mind. We still had received no word from the pathologist on the labs from my D&C to know whether I had lost a baby or had a mole that aborted itself.

In the following weeks, my levels fell to 2,586, then to 1,988, 814, and on down to 502. The pathology results finally arrived, and I learned it had come back as 46 XX—a complete hydatidiform mole that had developed in an invasive mole. No baby had ever existed. Amazingly, this made me feel better; I had felt so guilty, thinking I had done something to miscarry the baby. Now I knew what I was fighting.

My levels continued to fall, getting down to 470. My liver panel came back a little high, but a second test came back normal. My BhCG fell again to 249, then to 134. I was given iron to take because I was anemic, and I also started taking my prenatal vitamins again, which seemed a little ironic. By mid-May my levels were at 64. I had thrush in my mouth with stomatitis (mouth sores from the chemo), which was a little painful, but only when I ate something acidic. By May 20th—my fifth week of chemo—my levels finally reached 2. The doctor said this was as good as zero, because anything less than 5 was considered normal. I continued that week of chemo, had the next week off, and then finished my last week of chemo on June 3rd.

On July 1, with my levels still normal, I started my 6-month period of monthly bloodwork. Finally, on December 2, my oncologist called to tell me I was done with the blood testing. I was in the clear.

Thank you for being interested enough to read my story. It’s funny…you realize pretty quickly that you are so much stronger than you think you are. You’ll surprise yourself. It’s time for me to start trying again—pray for me.

Update, May 2018: I eventually was able to get pregnant a second time in 2004. From the very beginning of the pregnancy, I was watched like a hawk. My blood was taken on a weekly basis to be sure my HCG levels were climbing at a normal pregnancy rate—they were. After the birth of my second son, I was again on watch, with blood work every week until my levels reached zero. My doctors did not want to take any chances. I thank God for my children, and I thought we were done at two…well, not really. We had an “oops!” moment 3.5 years after my second son and got pregnant again (unplanned). I had to again go in for more weekly blood work in the beginning, and then after my third son was born, blood tests to watch that my levels reached zero. Everything fine!

I was very fortunate to not have to go through a subsequent molar pregnancy as I have read other women have. But it only takes the one experience to make you realize how precious a new baby is. My boys are now 19, 14, and 11. Crazy that when this all started, my oldest was 2 1/2 and is now in the Air Force!! Be thankful everyday. My heart goes out to every one of you ladies here, and I can only hope you have successful stories to tell too.
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