My Story
I miss being pregnant.
I know that sounds crazy, but it's true.
I see pregnant women, and I get this yearning to give birth to another precious human being, preferably this time a girl.
I went to the maternity floor today, and these memories hit me like a ton of bricks. Oh, look, here is where I gave birth. Oh, yeah, I remember that nurse....
But I don't miss the comments about my size. I blame society on that. There is such an overwhelming pressure on women to be walking sticks. Iwas never like that before I got pregnant.
To have another person to grow inside you, for him to hear your voice and for you to feel him move....it's like nothing I have ever experienced.
I guess I miss that.
I figure I'll get to a point in my life where I'll not want to be another someone's mother.
I just haven't reached that yet.
When Paul and I found out on St. Patrick's day that we were pregnant with our second child, we were ecstatic! Paul was hesitant at first to tell anyone until the pregnancy could be confirmed by a doctor visit, but I was so excited that I couldn't hold in the news. I was concerned about the reactions people would give us considering Jessie was only 15 months at the time, but my worry soon turned to sheer joy as people spoke "congratulations" and "that's great!" Life was at its best.
The first doctor visit was uneventful. I asked Paul to come with me because I was hoping an ultrasound would be performed. Paul and I would both be able to view our new baby! The doctor I was scheduled to see was unable to see his patients, so I decided to see the doctor who was covering for him. I realize now I should have rescheduled. The doctor flew through the appointment, checking the size of my uterus and confirming with the nurse that I was indeed six weeks along. I asked if an ultrasound would be performed. The doctor answered with a brief "no" (even though the ultrasound equipment sat beside me in the examining room). Then he left. I was given no due date, no congratulations, and no ultrasound. None of this bothered me then....at least not until my 12-week appointment.
Up until my 12-week appointment, I was feeling weak and nauseated, and I was already showing. In fact, I had the suspicions I was showing too early and that the nausea and weakness should have been over. My first pregnancy was much easier than this! However, I had been told that each pregnancy was different and showing starts earlier if you've been pregnant before.
Not in my case.
I went to my 12-week doctor appointment with high hopes that I would hear my baby's heartbeat. I was also somewhat disappointed that Paul could not go with me to hear her heart for himself. (Paul swore from the day I found out I was pregnant that this baby was going to be a girl. We came up with the name Nina Leona, Leona being my middle name as well. So I always referred to the baby as "Nina", and I still do.) When I met the doctor (the doctor I was supposed to see on my first visit), he introduced himself and mentioned to me that he wanted to do an ultrasound. My first thoughts were, "Oh, great! The appointment Paul doesn't attend, and they decide to do an ultrasound!" The doctor asked me if I had any questions before he performed the ultrasound, and I told him the previous doctor did not tell me my due date. (I had an idea of the date from looking at baby sites on the internet, but I wanted confirmation from him.) He stated that he would give me a due date after the ultrasound was performed. Never in my wildest dreams would I have been able to prepare myself for the results of that ultrasound.
The doctor started the abdominal ultrasound, which I assumed was standard, but since I was only at 12 weeks, I was not surprised when he couldn't make out anything. I mentioned to him that since I was only 12 weeks into the pregnancy, he would probably have to do a vaginal ultrasound to see anything. Agreeing with me, he left the room. I laid there for what felt like forever, and all kinds of things ran through my head....something's wrong, that's why they can't see anything....no, the baby's just too small to see anything unless they look vaginally....I must be pregnant! I haven't had a period in three months!....Oh, God, please come on....
The doctor returned with a nurse and started to perform the vaginal ultrasound.
One minute....
Two minutes....
Three minutes....It shouldn't be taking this long...
The doctor turned off the machine. "Ms. Inman, I have some bad news. You're going to miscarry."
FROZEN
I sat up. "What do you mean?" I managed to sputter. "You're kidding, right?"
To be totally honest, the rest of the appointment is a blur. I remember bits and pieces. I recall the nurse telling me apologetically, "There's nothing there in the sac." The doctor told me himself that I was pregnant, but something must have gone wrong because there was no visible fetal tissue. I was blown away. What do you say to something like that? How do you react to that? The doctor left the room to let me get dressed. He returned minutes later to tell me I had three options: wait to miscarry, have a D&C, or have a pill placed vaginally that would cause me to miscarry. I sat there, stunned. He told me not to make a decision today but to call the nurse the next day to tell me what I had decided. He apologetically left the room. The nurse returned and hugged me, telling me it was okay to be sad and reminded me to call her with my decision. When I left the room and told the receptionist up front that I did not need another appointment, I was trying to hold back tears. I rushed out of the waiting room, not wanting to be confronted by the sight of the other pregnant women. I rushed into the bathroom, feeling like I was going to hyperventilate. Okay,I told myself, everything is going to be okay....I just have to tell my boss what has happened and pray that she lets me go home.
The building I worked in was nearby the clinic, so I decided to walk to the office to get some air and to figure out what I was going to say to my boss, to Paul, to my mother....My God, how am I going to tell Paul that Nina's died? Shaking my head as if the thought would go away, I walked to my work building and sighed, hoping I wouldn't lose it in front of the others.
I walked to my boss' desk and looked at her. She looked up at me. I covered my mouth to stiffle a cry and tears began to trickle down my cheeks. "What's wrong?" she asked me, but all I could do was hold on to her and cry out. She physically had to hold me up while I sobbed uncontrollably on her shoulder. In the midst of my release, I spoke the most awful words I had ever heard, "They told me I'm going to miscarry." Needless to say, my boss (who is a female and had suffered a miscarrage herself at 4 months gestation) was very sympathetic and took me to a nearby private office. From there, I tried to call my mom and got the answering machine. I drew a heavy sigh and called Paul. As soon as I heard his voice, I broke down again. "It's about the baby, isn't it?" he asked me. It was as if he already knew. I tearfully told him what had happened at the doctor appointment. His voice sounded disappointed but much calmer than I expected. I wanted him to come home but he couldn't miss any work. I hung up with him feeling a little better that I had told him, but what about Mom? One of the ladies I worked with volunteered to call her for me. Now much more composed but feeling somewhat numb to all that had happened, my boss drove me home.
I felt somewhat relieved when I got home. My boss called work from her car phone and asked if my mother had been contacted. She had. And she was upset. Oh no, I thought, if she loses it, I know I'm going to lose it. When Mom arrived, she looked like she'd been crying but was presently calm. I didn't get upset when I saw her. In fact, I don't think I got upset the rest of the day. I was so numb I honestly don't remember any of the rest of the day, except the fact that I decided that I was having the D&C. The date was Thursday, May 13, 1999.
The D&C was scheduled at 8:00 a.m. on that following Monday. I did not know really what to expect, but I knew I didn't want to be there. They did the surgery on the labor and delivery floor! Talk about rubbing it in! The operating room the nurses took me to was beside the one where Jessie was born. I was not given general anesthesia, but I was given something that made me "out of it." Before I knew it, I was back in my room. It was over. Just like that, I was no longer pregnant. I remember calling for my mother and asking her if I was no longer pregnant. Then I began to cry. Nina was gone...never to be born and breathe and cry....
After the anesthetic wore off, the doctor (the same one who gave me the bad news) came in my room and told me the procedure went well. He was going to send the "tissue" to the lab, I guess to get an idea about what went wrong. I was still numb but somewhat angry too. I told him I wished an ultrasound was done at my first appointment, and we would have known then and could have already had this behind us. All he could do was agree. I left the hospital feeling physically better but emotionally I was ready to start trying to get pregnant again and to put this whole incident behind me, not necessarily to forget Nina but to move on with my life.
Once again, not in my case.
I was very angry and upset that following Saturday about losing the baby, so Paul and Jessie left the house, giving me some privacy to grieve. I almost didn't pick up the ringing phone, but I did. It was the doctor who performed the D&C. I was nowhere prepared for what he was about to tell me. He introduced himself and told me he had received the lab results on the "tissue." He told me that I had a "partial molar" pregnancy. To clarify the term, he told me that when fertilization took place, something genetically went wrong. It was just something that "happened," and no one knows why. Nothing anyone did or didn't do caused this. He explained that when the D&C was performed, there is no way to be sure that ALL the tissue cells were removed. These cells that are left behind can grow and spread like a cancer. In order to monitor these cells, I needed to have my blood drawn weekly to have my "HCG levels" read. These levels have to go down to 0. I was told that while this process was going on that I COULD NOT get pregnant. I was extremely confused and could hardly breathe. Cancer, I thought. Oh God, I thought this was over.... The doctor assured me that the chance of contracting cancer from this was only 5%, but I needed to use effective birth control to assure that I would not get pregnant. I reluctantly agreed that I would get back on my birth control pills and would start having my blood drawn that following Monday. I hung up the phone, feeling confused about this whole "partial molar" thing and the chance of getting cancer from being pregnant. Who ever heard of such a thing? Feeling like I was going in this situation blind, I started searching the internet for information about partial molar pregnancies.
All I can say is thank God for the internet! I wasn't able to find much about partial molar pregnancies, but what I did find helped tremendously. All the information that the doctor gave me was true. This loss was genetically based. I read that a molar pregnancy happens in 1 out of 1000 pregnancies. I found out that most likely what had happened was my egg was fertilized by TWO sperm, thereby introducing THREE sets of chromosomes instead of two. Well, obviously, this is very abnormal, which creates an abnormal fetus (who dies in the uterus) and an abnormal placenta, whereby these placental cells grow at an abnormal rate. These placental cells put out the pregnancy hormone HCG. Since there were too many placental cells, this caused my HCG levels to be higher than normal and the pregnancy symptoms to be exaggerated (remember I was nauseated more and showed earlier than usual?). When the ultrasound was performed, all that could be seen in the sac was these placental cells, not any fetal tissue (which I believe was visually hidden by these cells), giving a snow-like appearance. (I believe this is why the nurse said that there was nothing in the sac.) The chance of these placental cells growing and spreading was, in fact, only a 5% chance. Everything the doctor told me was correct. However, I also read that the average wait to try to conceive again after the HCG levels reached 0 for a partial molar pregnancy was six months to a year, and the chances of having ANOTHER molar pregnancy were doubled (1%). I honestly did not want to wait even six months, but if it meant having a better chance at not having another molar pregnancy and having a healthy baby, then I was going to try to be patient.
On May 26th, thirteen days after being told that Nina was dead and nine days after having her surgically removed from me, I went for my first HCG reading. I found out the following Thursday from my doctor that it was around 8000, which he told me was normal for my situation. Feeling like I was going to make it through this ordeal, I left the clinic with renewed hope.
June 2....4839....halfway drop....great!
June 8....3901....not as much of a drop, but still great....
June 14....2946....still dropping....
June 21....2045....come on, hurry up....
June 28....1925....don't be worried....it tends to slow down as it gets closer to 0....
July 6....1756....a little better, but it needs to drop more between readings....
July 13....1411....still needs to do better, but at least it's dropping....
July 20....914..YES!!!!I'm in the clear!!!!
July 27....1266..ALARM
I had called the clinic on July 27th to get my reading, and when the nurse told me the numbers, I immediately told her I needed to speak to my doctor. He took no time getting to the phone and telling me he and his nurse were already aware that the HCG levels were rising and that he was making me an appointment to see a gynecologist oncologist. The word oncology to me meant cancer, and I had to face the fact that that was exactly what I had.
My doctor's appointment was that following Friday. I was nervous about it because I honestly did not know what to expect. However, I was told nothing that I did not already know from searching the internet. My doctor (who was a female--COOL) told me that I have Gestational Trophoblastic Disease, which meant that the placental cells were growing bigger, and that was why my HCG levels were starting to rise (these cells release HCG into the bloodstream, and the bigger they are, the more they secrete). I was going to have some bloodwork to check my HCG level and the functioning of both my kidneys and liver. Then I was going to have CT's (a special type of x-ray) of my head, abdomen, pelvis, and chest to make sure the cells had not already started to spread. Then I would talk again with her a week from the following Monday to discuss the results and to decide what treatment would be best. I was shown the "chemo" room, and the reality that I was now a cancer patient hit me like a ton of bricks. My mom asked me if all this scared me, and I replied, "A little," but in reality I felt like I was in a bad dream, wanting to wake up and find that I was still pregnant and that the baby was okay.
Having the CT's done was no picnic. I had to drink Pepsi with "contrast" in it (YUCK!), then had an IV with dye in it in my right arm, and I had to have a barium enema (DOUBLE YUCK!), all of this so everything could be seen on the films once the CT's were done. When I finally talked to my oncologist, she told me that the chest and abdomen films were clear of cancer, the head films were misplaced, and the pelvic films had a small shadow on one part of my uterus. She told me that that was most likely the cells that are causing my HCG levels to increase instead of decrease. I was so relieved that the cancer was only in one part of my uterus and nowhere else! She told me treatment would start the next day, and I would be given Methotrexate, a low-dose form of chemotherapy that should not make me sick or cause my hair to fall out. At that moment, I decided to myself that I was not letting this thing kill me like it did my precious Nina.
The first shot was not that bad. I had to have my HCG levels read first, and then I received the Methotrexate in the hip. The nurse had given many of these shots, so I didn't even feel it go in! Boy, was I relieved!
August 10....1022, then first dose of chemo
August 17....623....Practically halfway already....YES!....
August 23....604....Did not go down hardly any....If this keeps up, I'll have to go to stronger chemo....Oh, God, please make this work....
August 30....415....YES!!!! Out of the clear, and heading to 0!....
September 7....301....We're getting there....
September 14....219....Please hurry up....
September 21....179....Did not go down hardly any again....I really don't want to take stronger chemo....
September 28....175....Time to switch gears....
My oncologist called me with the last HCG results. I know it sounds crazy, but the fact that they did not go down enough this time really did not surprise me. I've fallen into the small percentages so far, why should it change now? I went to her office and talked with her about what to do now. She told me we had two options: continue the Methotrexate but give it daily for five days instead of once a week or start a stronger chemotherapy, Dactinomycin, for five days, then off a week, then five days, and so on until 0 is reached and stays at 0. The only thing about this treatment is that it is harder on the body. Expect more fatigue, some nausea, and my hair may thin. I agreed with her to try the stronger chemo. I did not want the numbers to start going back up again. I met with the chemo nurse who placed an IV in my right hand (would not work in my left hand....seems my veins are starting to fail because it takes more attempts to draw blood) (I have to have an IV with this treatment instead of the shot in the hip), and then she proceeded to give me the chemo after a few "pre-meds" (anti-nausea medications). It only took 5-10 minutes to give me the medicine. I had previously called my mom to tell her the news, and she didn't seem to take it so well. I try so hard not to get discouraged, but there are times that giving up on the chemo and having my uterus removed looks good. Of course I'm not. So I had to work the entire week with an IV in my hand. It was difficult but I made it through. I took my fifth dose in the hospital on Saturday (October 2) and am thankful that I have a week off the chemo before I have to have any more. I just hope my HCG levels have been affected. Everything else in my life has been.
October 4....My first week after all five doses of the stronger chemo, and I am bad off. Paul had to take me to the GYN/Oncology clinic where I have my treatments to get help. Obviously, this chemo is going to give me all the typical side effects....the mouth sores, the fatigue, and especially the constipation. Not to gross anyone out, but on this day, I had not successfully gone to the bathroom in eight days. Talk about sick. But the doctors fixed me up. I had two enemas and plenty of fluids given to me by IV (got to love those needles). I have also been introduced to mouth sores that make it very difficult to eat. The whole point of mentioning these reactions is to show that the chemo is very rough on the system. I have experienced reactions to this medicine that I would not wish on my worst enemy. Besides, I should be eight months pregnant now, not fighting cancer.
October 6....I had my first period since getting pregnant with Nina....I know this means my HCG levels must be going down, but I'm a little sad too. Nina really isn't here. She will never be born. I will never hear her cry or feel her move or see Jessie's face when he looks at her for the first time. This is real. This is permanent. This is something I have to accept, but I have to get well first.
October 11....time to check HCG levels....God, I hope the chemo has made a difference....19!!!!YES!!!!I'm almost to 0!
October 24....one more day before I resume chemotherapy and get the latest HCG levels. This past week has been rough. I have had the worst mouth sores, and I still have them! I've also made an important decision....I am not receiving any more chemo, regardless of the HCG levels. If they are below 5, then the cancer is gone, but the doctors are going to want me to take 2 more weeks of treatment (4 weeks total time) to make sure it does not return. You know what? If it's going to return, then it will return because it is God's will that it return, and four more weeks of this crap will not make a difference. If the levels are not below 5, then the only other option is to have my uterus removed. I don't want that, but I can't keep taking this chemo. It's killing me.
October 25....I told my oncologist I didn't want any more chemo over the phone while I was in clinic. She told me that that was not what they wanted me to do, and I told them that I knew this. She then told me that if I didn't continue and finish treatment, I had a high incidence of this cancer spreading to wherever it felt like and that it is considered LIFE-THREATENING. This knocked the breath out of me. I had no idea this cancer could do this. Talk about a dose of reality. After I heard that, I told my oncologist that a few more weeks didn't sound too bad after all. But I do have great news....my HCG levels are at 0!!! Two more weeks of this stuff, and I am done! Thank you Lord! :)
November 8....My HCG levels are still at 0!!! One more week of treatment to go and I am done!
November 15....I am done with treatment, the mouth sores are coming, but the levels are at 0!!! YES!!! I AM CANCER-FREE!!!! Now I just have to go through weekly HCG readings for a month, then once a month for a year, then if the levels stay at 0 the entire thirteen months, then I am done for good!
My experience with molar pregnancy is like most....you are completely overwhelmed by the fact that something went wrong with your pregnancy that you had absolutely no control over as well as the chance of developing cancer (GTD) but also you are confused and lost because there is not much information out there about molar pregnancy. That is one of the main reasons I created this site: to educate the public about molar pregnancy and Gestational Trophoblastic Disease. My situation is rare: 20% of complete molar pregnancies and only 5% of partial molar pregnancies end in cancer, and I happened to fall into the 5 percent. So just because you or someone you know has had a molar pregnancy DOES NOT mean that she will get cancer. The odds are in favor that she doesn't. Another quick point....just because a baby's body does not develop DOES NOT mean a baby did not exist. That baby is real like any other, and don't let any ignorant person tell you "there was nothing there." There was. Don't let it get to you. People don't know any better, but you do. Now you do.
PLEASE VISIT THE REST OF NINA'S WEB SITE!
MY STORY PART TWO: ABIGAIL
A second chapter of my story dealing with my third pregnancy, Abigail Lynn, who was lost due to a blighted ovum
MY STORY PART THREE: JUSTIN
A third chapter of my story dealing with my fourth (and successful!) pregnancy, Justin Kenneth, our second son
JESSIE
Jessie Daniel was our first pregnancy, and this is a picture by picture introduction to our first son
JORDAN
This is the story of our latest addition to our family: our third son and second back-to-back successful pregnancy
AWARDS RECEIVED
This is a page that shows off the awards that this web site has received
MEMORIALS
A page dedicated and created to other precious children who left too early
MOLAR PREGNANCY INFORMATION
If you are looking for more information about molar pregnancies, this is a great place to start!
HOME
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