Lisa J.

On December 25, 2002, I conceived my first child at the age of 39 after trying for about 15 months. I did two home pregnancy tests on January 13, 2003, and they were positive immediately. My husband and I were elated. We made the decision to not tell our families until after my first visit to the doctor. My doctor told me he always does an ultrasound during the first visit at 7 weeks. My appointment was February 5, 2003. We planned to tell our families by showing them the ultrasound pictures the weekend of February 7th. The doctors also thought I might have a good chance of having twins, because my mother is a twin and I am older and this was the first pregnancy. I was thrilled at the thought of having twins. I had always said that that was what I wanted.

Finally February 5 arrived and my husband was in the room as the doctor began the ultrasound. I had a sick feeling in the pit of my stomach that something was wrong. The doctor asked me again when I had had my last period, and I answered December 13, 2002. He then told me that he could see no sac with a baby and there was no heartbeat. However, he did see a large cyst on my right ovary. I was completely devastated. I felt as though my world had fallen apart. I completely lost all control right there. He took us to his office and told us he was sending me to the lab to get my hcg levels checked; he thought maybe I wasn’t as far along as I thought. He promised he would let me know within 3 hours. I was unable to return to work because I couldn’t control my emotions. I got on the phone and called my mother. It was quite a shock to her, since she didn’t even know I was pregnant. I was in such an emotional mess that she told me that she and my sister would travel the distance to spend some time with me.

In less than 3 hours, my doctor called me and told me my hcg levels were at 40,800, which meant I could be up to 12 weeks pregnant. He was trying to get a specialist to do another ultrasound that day if I could go, and I told him I would definitely go if he could get the appointment. Within 10 minutes, he called to say he had located a doctor who would do it within the next couple of hours. My sister and I went to the appointment and the first technician began by doing a regular ultrasound. She could not see a sac or a baby. She then did a vaginal ultrasound. She still didn’t see a baby or a sac. Another technician came in to view the ultrasound. She didn’t see anything either. They then called in the doctor, who had been outside the room viewing the pictures as the ultrasound was being done. He came in and looked at the live ultrasound and told me that he was almost sure that I had had a molar pregnancy. He said most of the time the mass will look like a cluster of grapes in the uterus, but that mine were quite a bit larger. He called my obstetrician immediately and told him what he thought. My OB doctor asked to speak with me and he told me that sometimes a molar pregnancy can turn into cancer, but that if I would agree, we would wait another week just to be 100% sure it was a mole. He promised that a week would not put me at more risk. I kept thinking maybe they had made a mistake. I chose to wait another week in the hope that some miracle would happen and all this would be just some bad dream.

It seemed as though the week would never pass. It was total misery for me. I couldn’t concentrate on anything, and all I did was cry. I prayed and prayed that everything would be okay. I wanted this baby so badly. Everyone tried to comfort me by saying that everything happens for a reason and that it was better now than later. They meant well, but they weren’t losing a child. On Friday of that week, I got the nerve to go on the internet to research molar pregnancy. I thought I should educate myself. It was complete horror. Everyone said I shouldn’t be reading this stuff because most of it probably wasn’t accurate. I told them I had to know something. Finally, the week passed and my husband and I went back to my doctor on February 12, 2003. He had his assistant do another vaginal ultrasound, and she didn’t see a baby or a heartbeat. He came in and tried again himself, but still nothing. It had gotten larger during the week, and he was now pretty certain that it was a molar pregnancy. He told me that I should have a D&C and that I would need to have blood drawn on a weekly basis for 6 months. He also told us that the time frame to get pregnant again would be 6 months instead of the 1-year waiting period that most of the articles I had read suggested. He told us all the risks involved in having the D&C and the risks associated with the molar pregnancy. At this point, he told us that it appeared to be a complete mole instead of a partial mole but that the pathologist would make this determination after it had been removed. Because I live in the Raleigh area, he told me if I wanted he would send me to Duke University because there was a doctor there who specializes in molar pregnancy. I chose not to do this because I trusted this doctor and the waiting time would be prolonged. I knew from just waiting 1 week that I couldn’t emotionally handle waiting any longer. I asked him immediately if there was any way he could do the surgery the following day. He called the hospital and made the arrangements for 12:00 the next day. At this point, I knew there was nothing the doctors could do and nothing I could do. Although I felt hopeless and helpless, this was my only choice. I decided at this point that I had to put on my tough face because I knew the journey ahead would be a long and rough one.

On February 13, 2003, I made my way to Rex Hospital in Raleigh, North Carolina. Everyone was very kind and understanding of my situation. The doctor ordered lots of blood tests and chest x-rays before the surgery. He wanted to go ahead and check my liver function and check my lungs to see if it had spread. He also checked my hcg levels again. Before they put me to sleep, they flagged blood in the blood bank for a transfusion in case I lost too much blood. He also told me that my lungs looked okay but that my hcg levels were high—now 120,000. They had tripled in a week. Fortunately, the surgery went well and I didn’t have much bleeding at all. I left the hospital 3 hours after surgery. I felt tired and still had all the symptoms of the pregnancy, but overall I felt pretty good physically. Emotionally, I felt as if I were dying inside. I tried to keep my tough face on for my family and friends. I knew that I must grieve in my own way. Unless someone has been in my shoes, I’m not sure they understand my feelings.

The day after the surgery, my doctor called to say the pathologist had diagnosed it as a partial mole, instead of a complete mole, which was better for me because the cure rate was higher in partial molar pregnancies. I had my first hcg test 2 days after surgery and my levels were down to 20,000. After doing well for a few days, I started having pain in my left lower back and side and pain in my chest. I even had some shortness of breath. The pain got so intense that I began to vomit. I called my doctor’s office and got one of his partners and she told me to meet her at the hospital. They again did blood tests and chest x-rays. The chest x-rays showed quite a bit of inflammation in my lungs and the doctor said they sounded like a foghorn. They hoped it was just pleurisy or a touch of pneumonia, and they thought the pain in my side was coming from a fibroid tumor they had found on my uterus. My hcg levels were dropping rapidly, which is what they had hoped for; by February 19, 2003, they were down to 4,000.

I went for my postoperative visit on February 21, 2003. My lungs were clearing up with the antibiotics and my uterus had gone down to regular size. I was actually beginning to feel a little better physically, but the emotional pain isn’t healing as quickly. Two weeks after the surgery, my hcg levels were at 581 and still falling. We’re hoping they will be down to zero soon. Then we must endure the 6 months of waiting and lab tests and the daily struggle of trying to accept our loss. I still have a long way to go, but I am trying to remain optimistic for the future.

Although the loss is more than I can bear some days, I am thankful for my doctor. He has been wonderful throughout this ordeal. He always takes the time to call me himself instead of having a nurse or someone else in the office call. He is always willing to sit down with me and answer any questions that might arise. He has really been a godsend. My husband, our families and friends, and my co-workers have also been very supportive. Without their love, patience, and understanding, I don’t think I would have been able to move on.

It is my prayer that when this ordeal is over, my husband and I will be blessed enough to become pregnant again and have the child we long for. I also pray for all the other women out there who are going through this. I feel your pain.

On March 5, 2003, I went for my weekly blood draw. I had been feeling really sick during the week. I received a call from my doctor the following day while having lunch with my husband. I could tell by the sound of his voice that the news wasn’t going to be good. Unfortunately, my levels had increased to 1699, up from 581. I told him I already knew. “How do you know?” he asked. I told him I was getting sicker every day. He told me he would have his office call me later that day with an appointment to see the leading specialist in this field at Duke University. This was on a Thursday. On Saturday, I had to have a CT scan of the body and chest x-rays to take with me to Duke on the following Monday. I had no time to fall apart. It was like a whirlwind trying to get everything in order. I knew from my research and my doctor’s words that chemotherapy and cancer would be a part of my existence. I went home to visit with my family and friends after the tests on Saturday. On Sunday, my mom came home to be with my husband and me.

On Monday, my husband, my mother, and I made our journey to Duke. We saw the doctor and met with a chemo nurse. I was then sent for another ultrasound. My hcg levels were tested again and before I left Duke we already had the results. My levels were now at 2385. They talked to us about what to expect with the chemo and asked me to participate in a study on gestational trophoblastic disease. There was so much going through my mind, I asked if I could give them an answer about the study the following day. Being in a blind study such as this leaves you not knowing which chemo drug you will get until you arrive for the first treatment. There are only two different drugs involved in the study. The following day I called to let them know I would participate in hopes that one day it may help someone else with their struggles. It would be only two more days before the actual chemo would start.

I went to work to try to keep my mind off what was actually going on. It was quite a struggle. By the time I arrived at Duke on Thursday, I was really quite scared. I went in to select my drug and it was going to be methotrexate. My nurse told me she was glad that is the drug that was selected. It has been more widely used. She took me to the treatment room to introduce me to the staff who would be in charge of the actual chemo. I remember looking around and seeing all these really sick people and thinking is this what I’m going to be like and look like when this is over. In treatment rooms, everyone is just lying around in recliners and beds. There is no privacy. Since my chemo is an injection in the hip muscle, I was taken into a bathroom for a little privacy since all the beds with curtains that can be pulled were full. It was so horrifying. The injection hurt really badly and began to bleed, even onto the floor. I started to pass out so they took me to a recliner to rest and relax. I remember seeing my husband when I walked out and he had a look of shock on his face because I was so pale and couldn’t walk without assistance. After sitting for a while, I had to be wheeled out in a wheelchair to the car. I couldn’t believe my life had come to this.

In the weeks following, I was always given a bed in the treatment room. They began to give me IV’s, steroids for energy, and more antinausea medicine in addition to the chemo injection. They were trying anything to make me more comfortable and less sick. After weeks of all the medication, with really no success, I asked them to just stop the medications and do the chemo injection. They agreed, because the medications were really not helping me. I still have many weeks of chemo to do. When people ask me how I am doing, I just say, “I’m hanging in there.” At this point, it’s all I can do.

It has been 3 months since this whole ordeal began. It seems like forever. Last week, I had my 8th weekly chemotherapy treatment. For the first 7 weeks of chemo, I was sick pretty much every day. I was totally miserable and had many side effects. I also continued to have morning sickness, just as though I were still pregnant. The first thing I did every morning was vomit. Although I was taking eight different anti-nausea medications, the sickness continued. The doctors thought maybe it wasn’t just the chemo making me sick, but the hcg levels. They said my body just would not accept that I was not pregnant.

My levels have continued to drop, but at a slow pace. When I began my chemo on March 13, 2003, my levels were at 3130. At week 2, they were at 965, week 3—656, week 4—166, week 5—117, week 6—114, week 7—49, week 8—25. Some weeks, we have seen some good drops and some weeks they have not been so good. Between weeks 2 and 3, I became totally devastated. I thought I couldn’t handle it anymore. All I could do was cry. I was a total wreck. The doctors, however, tried to convince me that any drop is good. I am now beginning to feel like some progress is being made. My levels have finally dropped enough that my body accepts that I am not pregnant, and the sickness has stopped. I only take a couple of medications at bedtime. The doctor also said my body has now become accustomed to the chemo. The doctor and nurse have also tried to prepare me for the fact that my levels may stop dropping fast, or they may stop dropping at all. I have no idea when I will be able to stop the chemo. Even when my levels finally drop to below 5, I must still endure at least two more chemo treatments. After that, I will continue to have my levels checked on a regular basis, beginning with once a week. Unfortunately, we cannot even begin to plan when we might be able to have a child. Every day of our lives, we have to deal with the sadness and frustrations of losing the child we wanted so badly.

I do, however, remain thankful for a great support system, including family, friends, and coworkers. God has blessed me with the best husband in the world, and my mother continues to be the most wonderful mother a person could ask for. I only hope I can one day be the kind of mother she has always been.

There has been another very special person in my life during this time of chemo. It is a coworker of mine who has battled breast cancer recently and had to have chemo and radiation. She has been a real friend to me on good days and bad days. I can always tell her anything. We can talk about our battles and tell each other how we are feeling. It is truly someone who can relate. Even though our diseases are very different, we have a lot of the same feelings. Cancer, chemo, and radiation take a toll on a person physically, but unless you’ve been through something like this, you have no idea what it does to you emotionally. The medical profession doesn’t prepare you for the emotional part. I will always have a real bond with her, a bond that will never be broken. I will never be able to thank her enough for standing by me. When I finally finish my chemo, we are going to celebrate in a big way. She finished her treatment a few weeks ago but chose to wait until I finish to have a real celebration. What a special person.

UPDATE: JUNE 6, 2003
I had my last chemo treatment yesterday. I am thrilled to have this part of my terrifying journey over. It has been a very long and hard journey. It is one that I will not easily forget. When I last updated I had finished my eighth chemo treatment. We had hoped when I started that I would only need six to eight treatments. However, I wasn’t so fortunate. During week 9 my levels dropped to 16. At week 10, they hit a plateau. They were still 16. I began to get very discouraged again. I even thought of stopping the chemo altogether. It was just getting to be more than I could bear. I told myself I would give it one more week. I knew if it didn’t change, I would be administered another chemo drug, which would have even more side effects. Week 11 brought my levels down to 12. It wasn’t big in numbers, but in percentages, it was 25%. I was grateful it was working again. I now felt I had hope again. During week 11, I began to have shortness of breath and a nagging cough. It was quite scary, thinking it may have spread to my lungs. X-rays were ordered and the doctor examined me and found that I had a little bit of a respiratory infection. The cancer had not spread. I was very relieved. Over the next week, I started having quite a bit of cramping and bleeding so I called the nurse. She said this could be a good sign. It indicated the molar tissue was finally releasing from my body. That was exciting news to me. When I went for treatment #12, I was examined by the doctor, who confirmed that it was molar tissue. Before receiving my treatment that day, my husband and I got the news we had been waiting to hear for all these months. My levels had finally gone down to 5, which is the magic number. This is considered to be negative. I received my treatment and went home knowing that I only had one treatment left. As week 13 approached, I was very excited and anxious for chemo day to arrive. I went to chemo and upon leaving gave my favorite nurse a hug and told her I would not miss going to chemo, but I would miss her great personality. I hoped I would never see the treatment room again, unless to visit her.

While typing this update, the bad news came. My levels went up again. Devastation is not the word for how I am feeling now. I was told just to wait until next week and have my levels checked again and we would have to make decisions from that point. They went up to 7. Now, I just have to sit and wonder if the cancer is back and if so, where it may have spread.

UPDATE: JUNE 12, 2003
I finally got my results from yesterday’s blood work. My levels went negative again. When my nurse told me this morning, I had a brief moment of excitement. Then, once again, I got the bad news. I have to start chemo back today, which means I didn’t even get to skip a week. Because they were elevated last week and went back negative this week, I must have at least two more treatments. I am totally dreading it. After the chemo finally ends, the next year of my life will consist of having my blood levels checked and waiting around for the results each time to see if the cancer is back. I can’t wait until the day I can put this whole nightmare behind me.

UPDATE: JUNE 20, 2003
I got my results from yesterday’s blood work. I am negative. This is the second week in a row, which means I can stop the chemo. After 15 treatments, I am now physically and mentally exhausted. Now, I must start to rebuild my life. I just hope one day I can be my normal self again. I’m not sure it’s possible after such an ordeal. My life has been such a whirlwind for the last few months and I’m not sure I have taken the time to realize what a toll this all took on me. I do know that the real healing process begins now.

UPDATE: JULY 25, 2003
I have now had five blood tests which were less than 5. This is the first week since February 5, 2003, that I didn’t have to get stuck. I am now scheduled to have blood drawn every 2 weeks instead of every week. I am actually beginning to feel a little better physically. As you all know, chemo kills the good cells as well as the cancer cells. After chemo, it takes at least a few months for the cells to rebuild themselves. I’ll be glad when this happens and I regain my energy. Also, the chemo killed my skin cells, and I have not been allowed to be exposed to the sun at all. I had hoped when chemo ended that I could get away for a few days at the beach, but I haven’t been able to do so at this point. They said I would probably burn and would risk having melanoma. It’s not worth the risk. I hope I never have to see another chemo treatment room. Since finishing chemo, I have not been able to make myself return to Duke. The memories are still too fresh in my mind. I am having my blood drawn and seeing the doctor at a satellite office in Raleigh. I don’t know if I will ever be ready to go back there. I do know from this experience that I am healing faster physically than I am emotionally. However, I have come a long way and I know as time passes, the emotional healing will continue. I just pray that one day I will be my old self again.

My levels have now stayed below 5 since June 12th. I am now having my blood drawn only once a month. I am actually beginning to feel like myself again. I have regained most of my energy. Last week was somewhat difficult for me since our baby would have been due on September 18, but we got through it just like we have everything else. I now have 9 months of blood draws left before we can talk about having another baby. I have my next blood draw on October 7, which is always a little scary since I never know what the results might be. I have learned to just take one day at a time and deal with whatever comes my way.

UPDATE: MARCH 10, 2007
It has now been 3 1/2 years since my last update, and exactly 4 years today since I was diagnosed with cancer. To be honest, I have been very hesitant to write again because I did not want to discourage anyone by my plight. However, after lots of soul searching, I have decided to catch everyone up on my story.

In June of 2004, I reached a milestone. It had been 1 year since my last chemotherapy treatment, and we were given the okay to try for another child. My husband and I immediately sought the help of an infertility specialist. We did lots of tests and even did a laparoscopy to remove some scar tissue. The doctor told us we would never get pregnant on our own because I had a blocked tube, probably caused from a ruptured appendix that occurred in 1989. However, he agreed to try me on Clomid for 1 month. I did produce eggs, and I became pregnant in September 2004. Almost immediately, I began to miscarry. Once again, my husband and I were devastated. We thought we could not endure yet another loss. After this miscarriage, the doctor continued to insist we would never get pregnant on our own. He kept pushing us to try in vitro fertilization (IVF), which we did not want to do. We had informed him of this during every visit. He had already told us there was only a 3% chance of getting pregnant with the IVF and that we would have to travel out of state to do the treatment. After a few visits, it became apparent that he was in it for the money. He knew we were desperate, and he played on our emotions, but we were able to see what he was doing. When I returned for my postoperative visit I informed him that we no longer desired his services and that I had been doing some research on my own and had made an appointment to see an infertility specialist at Duke University. She had come highly recommended and specialized in egg donor programs.

I went for my visit with the specialist, and although she looked at the same test results as the previous doctor, she did not agree with him at all. She said I could become pregnant and that we should try again on our own. We had decided to give it until March of 2005 before pursuing the egg donor program completely.

As luck would have it, I conceived again on January 19, 2005. In February of 2005, I had a positive pregnancy test. We were happy beyond belief. We thought we were getting another chance at our dream of a child. I immediately called the doctor who had been my OB/GYN during my molar pregnancy; the doctor whom I still believe is the greatest and most compassionate doctor ever. His staff immediately scheduled an appointment for me. On the ultrasound we could not see a heartbeat, but we could see a normal-looking sac. The doctor told us that it still could be a little early, because I was only about 5 weeks along. He advised us to wait 2 weeks and then return for another ultrasound. Those were two of the longest weeks of our lives. On the second ultrasound, the heartbeat immediately was apparent. I let out a loud yelp. My husband and I were elated. The doctor printed us out lots of ultrasound pictures, and we shared them with all of our family and friends. I was 7 weeks pregnant and our baby was alive!

This was on Friday, March 4, 2005. On the following day, I was cramping a little, and by the next day I had a little spotting, but I knew this was sometimes normal in early pregnancy. By Monday, the pain had increased. I called the doctor’s office, and they told me to go on complete bed rest, which I did. On Tuesday I felt even worse so I called back, and they told me to come on in for another ultrasound. My usual doctor was not available on this day, so I saw one of his associates. As soon as she started the ultrasound, we saw there was no heartbeat. She confirmed this and also called another doctor in to look at the ultrasound. She told us our baby was now dead. The doctors left the room to give us time to compose ourselves. When she came back in, she told me that I needed a D&C and that they could do it the following morning, so surgery was scheduled for March 9, 2005. She also arranged to do genetic testing on the fetus in the hope that we could find out why we had just lost another child. We went home, and an hour later, as I stood up, blood gushed out of me. I immediately called the doctor’s office, and they told me to get to the emergency room. The doctor examined me and said that I had expelled all of the tissue and that I needed an emergency D&C, so I was taken into surgery. A few days later I received a very disturbing call from the doctor. She said she was afraid that all the tissue may not have been removed because there was not enough tissue for the genetic testing she had ordered. She told me I must start having weekly hcg tests done to make sure my levels dropped below 5 and to make sure I didn’t have yet another molar pregnancy. We were now struggling with the loss of our third child and the possibility of my going through living hell again. Fortunately, within a few weeks, my levels were normal. We were so relieved. We would start over once again.

By May of 2005, I was pregnant again. I immediately went to my doctor and had an ultrasound. I was only about 5 weeks so we saw no heartbeat, but the doctor decided to start doing my hcg levels every couple of days to make sure it was doubling, rather than wait for another ultrasound. My first hcg was done on May 15, 2005 and it was 371. When repeated on May 17, 2005, it had already started dropping. My doctor called this one a missed miscarriage and told me that instead of putting me through another surgery, he suggested that I just let nature take its course. By Saturday, May 20, 2005, I began to cramp and bleed pretty bad, and yet another child was gone. This was our fourth little angel. I continued to have my hcg levels checked until they were below 5.

After my levels dropped, my doctor called me and asked what my husband and I wanted to do about trying again. I told him we would really have to think long and hard, because we had suffered way too much heartbreak. He told me he saw no medical reason why we shouldn’t try again. He also informed me that none of these losses were a result of the molar pregnancy. He told me if I did become pregnant again to immediately start taking one baby aspirin per day, and he would also give me progesterone shots. Over the next few months, we didn’t really try to become pregnant but we also didn’t try to prevent it. In July of 2006, we sold our house in the Raleigh area to relocate near Wilmington. Somehow, during the relocation and the starting of a new job, I lost track of my last menstrual cycle. By mid August I started to feel sick, but I just passed if off as the result of stress from all the changes in my life. However, on August 21, 2006, I did a pregnancy test, and it was positive immediately. I was happy but also very scared. I began to try to find a doctor. I called four practices, and when I explained my situation, they all refused to take me on as a patient. I was horrified. I called another practice and finally got someone to hear me out. She obviously could hear my desperation, and she said she would see what she could do. I then called my doctor’s office in Raleigh. I talked to the nurse and told her my dilemma. My favorite doctor called me twice and told me we would figure something out. In the meantime, the other practice called me and said they would take me as their patient. I immediately went and the physician’s assistant did an ultrasound. She saw two sacs and called the doctor in, but he only saw one with no heartbeat. He told me it could still be too early and to come back in 1 week, but that we should remain very guarded. I asked him about doing hcg levels for viability, but he didn’t agree that it was necessary. The sac measured about 5 weeks on this visit. I returned in a week and still saw no heartbeat, but now the sac measured at 7 weeks, 3 days. He gave me three options: I could wait another week, I could schedule a D&E, or I could just wait and see if I lost it on my own. I chose to continue the pregnancy because I still had hope. I just couldn’t give up because I had had neither pain nor bleeding. I still felt pregnant. I waited yet another week.

It was now September 5, 2006, and my husband and I went for another ultrasound. There was still no heartbeat and now the sac measured only 6 weeks 4 days. The doctor spoke to us at length and told us that there was absolutely no hope left and that we should schedule a D&E and have genetic testing done on the tissue removed. Because of such a backlog at the hospital and surgical center, I had to wait 3 days. I prayed a lot that I wouldn’t lose it at home and risk losing the tissue, because we really wanted some answers as to why this loss occurred. After five pregnancies and still no live birth, we had to have answers.

After about 3 weeks, the results came in, and it was more than one problem. It was a female fetus with only one sex chromosome, an extra #7 chromosome, and an extra #20 chromosome. Any one of these is considered to be fatal. The doctor informed us that he still could see no reason why we shouldn’t try again. At this point, we have left it in the hands of God. We are exploring the possibility of adoption, because we have had no luck having our own child. We can only pray that God will see fit to give us a child. We will never give up that hope.

As I was finishing up my update, I got the results of my 6 month hcg and it was normal. So I can breathe for another 6 months. Next year, I will reach the magic 5-year mark, and these will discontinue.

Good luck to all of you!