Meet Special Edition 2019, Laguna Beach, CA
"Love of Life" Luncheon
"Love of Life" Luncheon
Special Edition 2019, Laguna Beach, CA
"Hearts of Hope" Luncheon
This special edition will feature all the women that came, their personal cancer/molar story along with beautifully captured photos throughout the day event taken by Bluejay Photography. Please check in often as we will add on a new survivor attendee each week! Click here for a special story on this event!
Meet Elaine, Georgia, diagnosed 1974
"My story is different than the others in the fact that mine was 45 years ago...before ultrasounds, MRI's, CT scans and the internet that linked doctors around the world. My story started in 1974. I was married straight out of high school and waited a year to begin our family. That was always my dream to be a housewife and mother. I threw away my birth control pills and was pregnant by early June.
My nausea started at six weeks. I went for my first doctor visit at eight weeks. It was already getting bad enough to ask him for something. He said I looked good but he didn't pick up a heartbeat which was not unusual. Over the next month the nausea became relentless. I would wake out of a sound sleep choking with projectile vomiting. I called the doctors office several times and tried to get into the doctor and was always put off. I asked all of the women I knew if it was normal and they all said it was and it would go away after my first trimester. It didn't.
For my twelve week appointment the doctor was out so I saw the nurse. She said I lost ten pounds but not to worry about it. She gave me more nausea meds and told me to come back in four weeks. Two days later I started bleeding. I called the office and the receptionist said the doctor was out again and the nurse said to lie down and prop my feet up if it got worse to go to the hospital. It stopped but started again the next day. Same story when I called the next day....lie down and prop your feet up. It stopped after a few minutes. Then the nausea got even worse and the bleeding became a daily occurrence.
At one point during it all it was so bad that I finally asked my mom for the name of her GYN specialist and she quickly told me that he wasn't taking any new patients. She told me what I was doing was normal because she did the same thing throughout her pregnancy with my sister. Once again I called the office and asked to see the doctor. The receptionist held out the phone and said, “It's the Hopper girl again!" I realized then that they thought I was acting like a big baby. No one believed me. My mom said it was normal and the receptionist dismissed me. Even my husband said I was acting like a baby. He said other women had babies all of the time and didn't act the way that I was. Out of anger he said that I needed to “grow up”. So I made myself get up and move even when my vision went black and I had to sit back down and put my head between my knees. It took me several hours that night to clean my house and take a bath and wash my hair, which I hadn't done in two weeks. I looked at myself and my house and I thought that they were right and he had a reason to be angry with me. So each day I forced myself to get up and do what I could even if it took all day.
I did call the office one more time to tell them that my sides were hurting me and asked if it was normal. Once again I got the same reaction from them so I quit calling.
When I was due for my sixteen week check up they called and canceled my appointment making it for October 24 because the doctor was going on vacation for the next two weeks and they had to shuffle us all around so it was three weeks longer for me to see him.
I was feeling a little better. The nausea had eased up enough for me to actually go shopping one day for baby things. The spotting continued daily but never got worse so I thought that I would be able to handle the rest of the pregnancy. My belly started to grow really fast and I started feeling movements but it didn’t feel like everyone said it would feel. I felt a movement here and a pull there not the butterfly feeling that I was told to expect.
The night before my doctor’s appointment, I was in my eighteenth week. I woke around midnight to a soaked bed. I walked to the bathroom embarrassed thinking that I had lost control of my bladder, so when I turned on the light I was shocked when I realized that I was covered with blood. My long flannel gown was soaked. It was running down my legs and dripping onto the floor. I screamed for my husband and he came running nearly fainting when he saw all of the blood. While he was getting me some dry clothes I sat on the toilet and I passed two large grapefruit-size masses that I thought was the baby. I scooped them out of the toilet without looking at them and took them with me. The ER doctor said they were blood clots and he started questioning me. He said my uterus was at least eight-and-half months along. He called my doctor, who was in the hospital and argued with him that there was something wrong with me and that I needed to be seen.
Once I was upstairs my doctor questioned me and asked me how much blood I lost. I said a quart. He literally laughed at me and said, “It only looked like that much.” The next day I was given a paper to sign for two blood transfusions. In the end they said I was definitely carrying more than two babies and they had strong heartbeats. Three days later he sent me home with complete bed rest for the rest of my pregnancy.
The next morning after going home I woke to a wet bed again. I went back to the hospital in a ambulance. Later that evening my doctor came in and told me to get up and walk around to see if I would start bleeding again because he was leaving the next day for Hawaii. He said if I started hemorrhaging again I would probably bleed to death before I got to the hospital.
I lived in a small town with only two doctors who delivered babies; my doctor and the other whom was also a surgeon. It was a Sunday and the surgeon had been off all day.
I got up around five that evening and walked down the hallway then went back to bed. At exactly 7 pm my mom and husband walked in my door just as I got an itch at the back of my neck. When I reached up to scratch it I pulled up my hand and blood was dripping from my fingers. My mom screamed and my husband ran from the room to get a nurse. The nurse rushed in and threw the covers back and found me laying in a puddle of blood. I remember her running from the room and then I went unconscious. I only remember bits and pieces after that.
I remember waking and the nurse holding my face telling me not to push no matter how much it hurt. The pain was excruciating! It felt like someone was pulling my insides out with their bare hands. I saw the doctor standing at the foot of the bed; total fear was written on his face. Another time I woke up and saw a nurse squeezing a bag of blood above me. I heard them say they were waiting for the surgeon to get to the hospital. I woke later in the operating room while they were operating on me and I told the doctor that I was going to be sick and he patted my hand and told me that it just felt that way. Before he could react I vomited all over him. He told me not to worry about it I had warned him. He even wiped my face with a wash cloth. Before I left the operating room I asked him about my babies and he shook his head no. I told him maybe the next time I would carry full term. He just patted my hand.
After I came out of surgery, I woke in a room and the surgeon was standing over me. I'll never forget what he said. He said. “Elaine, we ran into a problem. You have cancer. I had to remove both of your ovaries and we have to send you to Bethesda, Maryland”. I don't remember anything else he said because I passed out again.
When I woke up next my husband was standing over me. He was crying and the first thing he said was, “I’m sorry. I didn't know you were so sick”. I told him if he didn't want me because I couldn't give him babies I would understand. He said, “Elaine, that isn't how love works. I'm not going anywhere”. And he didn't. We have been married for 46 years.
It took three days for me to be able to talk about what happened. I crawled inside of myself and I didn't open up until my husband started talking about us adopting. He gave me a reason to go on living and fighting. He gave me my dreams back.
I learned the fourth day that I had a molar pregnancy and the two doctors had no idea what it was when they opened me up and these things spilled out of me. They said my ovaries were the size of baseballs covered with large cysts and molar tissue that had metastasized.That's why my sides were hurting so bad. So they removed my ovaries and scraped my uterus, deciding to leave it in, then sewed up the incision that started at my belly button and went all of the way down.
When I woke up and asked the doctor about my babies he knew that there would never be any more babies for me. I found out that there were no babies at all just the Hydatiform Mole. They said there was over seven pounds of the molar tissue that filled three large pans. When I went for my first doctors visit I weighed 145 pounds (65kg), I’m 5’7". When I left the hospital eleven days later with my arms empty, it was the day before my twentieth birthday, I weighed 120 pounds (54 kg). I was already going through full blown menopause and lactating at the same time.
I did go to my mom's specialist, Raymond S. Lupse, in Youngstown, Ohio. My dad called him and asked him the day after my surgery if he would take me as his patient and send me where he thought that I would need to go. He didn't hesitate. He said to bring me out as soon as I was released from the hospital.
When I went for my first visit with him he asked me why I didn't call him when the nausea got so bad. He said he would have seen me as a patient. He said the extreme nausea and the bleeding were the first signs of the disease. When he examined me the first time before removing my stitches, he found five large precancerous lesions on my vaginal walls that he had to cut out and cauterize with no anesthesia. He found several of my stitches that were criss-crossed and tied making it almost impossible to remove. He was furious! When he finished with his exam, he told me to come to his office. When I sat down he looked across at me and said, "If you want to go to court I will gladly go with you. What they did to you was nothing but gross neglect. All of the signs were there that something was wrong and they didn't listen to you." What he said made me feel better about myself, but in the end I knew that it wouldn't change anything so I told him no. I just wanted to put it all behind me not knowing three months later to the day that I had my first surgery that I would be right back where I was before only in a different hospital.
Even after receiving nine pints of blood in the hospital he said my blood work showed I was severe anemic. He didn't want to give me any more blood instead he put me on six iron tablets a day and planned my next surgery to remove my uterus the week before Christmas. That didn't happen because the nurses were on strike at the hospital he practiced at. The day after Christmas I started lightly bleeding again when it continued he took me into his office on January 2 and did a D&C with no anesthesia. Nothing came back from pathology. Three weeks later I woke to a soaked bed. I had started hemorrhaging again. Dad called Dr. Lupse at home and he said said the nurses were still on strike he would do what he could. He called back and said he got the hospital to take me because of it being a emergency.
He came into the ER and couldn't believe it when I told him how much blood I lost. He did blood work and came into my room and once again someone was mad at me....he snapped at me....Your dad said you were bleeding. You weren't bleeding you were hemorrhaging! There's a big difference! I started to cry and he walked over to me and placed his hand over mine. I told him I was sorry. All I had done was make everyone mad and inconvenience everyone and all I wanted was a baby. He apologized to me. He said I was right but it wasn't me that he was angry with it was the whole situation. He ordered me three pints of blood and three days later he operated and was shocked when he found out that the Hydatiform Mole was not only back but had penetrated the uterus wall and he found a second cancer called Choriocarcinoma. The man cried. He said he was so sorry. He said he was turning me over to a hematologist to find out if it had gotten into the blood stream.
I did question Dr. Lupse on my first visit about all that had happened to me and he told me that the heart beats that they heard was probably blood rushing through the stems that fed the cyst type tumors. The movements I felt were the tumors shifting in my uterus. The profuse hemorrhaging came from the stems tearing away from the weakened uterus walls.
I asked him about the Choriocarcinoma and he said that he could only find the case studies of seven other women with metastasized invasive hydatidiform mole and choriocarcinoma. Seven. This is where the internet would have come in handy. I was the eighth and I was told the other seven didn't survive. He said as long as it didn't get into my blood stream we had nothing to worry about. If it did, with chemo, two years would be a long life for me. He told my family that women usually died within one year of getting the disease.
Dr. Lawrence M. Pass, was Director of Hematology at Youngstown Northside and Southside Hopsitals at the time became my oncologist. This man was the one that got me through it all, emotionally and physically. He is and will always be my hero. He refused to call me Elaine, because my first name is Rosella so he called me Rosee. So it was Rosee who went through it all and came out the other side.
Dr. Pass had affiliation with Northwestern in Chicago, Illinois, teaching their interns. He used his interns and reached out to the Cleveland Clinic in Ohio and Northwestern in Chicago, Illinois setting up teams to decide how to treat me. They decided to put me on Methotrexate. Even with the drug they never expected me to survive they just expected to prolong my life.
They didn't know my God had other plans and I wasn't giving up. I wanted a baby and had hopes and dreams to live on! It took seven long months of hard trial and error with the new drug to get me to zero. Dosing and administering it were all decided as they went along. Finally settling on hitting me hard with five days on IV every third week. My first blood test that went to Chicago showed my level to be 400, this was eight months after getting pregnant and three and half months after having my ovaries removed. They had no way of gauging my body’s reaction because the women before me all had died. I was the first as far as they knew. They did chest x-rays every third week and they saw nothing but they knew it had metastasized because of the elevated HCG level. It was there. Without CT scans, ultra sounds or MRI in those days they never knew where it metastasized to. They were going blindly through it all. The internet has opened a wealth of information for the doctors today!
I surprised them all. I made it! My doctor was the greatest, not only did he get me through the chemo, four years later he helped us adopt our five week old son. Ohio had the strictest adoption rules of all the states back then. You could only adopt through the state run adoption agency, a Catholic adoption service or family members, they kept turning us down once they heard that I had cancer, even after I finished my treatments. Dr. Pass got angry after four years and said he was going to go to them himself because, quote. "You have been through hell and back and this just isn't right to do you this way. Anyone can get cancer, even a new mother so it isn't fair to you to deny you a baby when you have been testing 0 for this long." I don't know what he said to them but the next time we called the office they told us to come to their office and fill out the paper work, and they would look it over. That was the spring of 1977. They did our home study that fall and on February 1, 1978, she called and said we had been accepted as adoptive parents and were put on the waiting list. She said it was a 5-10 year waiting time. We knew people who had been on the list for several years and still hadn't gotten a baby. On March 23...the next month, the phone rang and I answered it. It was our case worker, she said she was calling to tell us that they had a baby for us. It was a baby and it was boy and was born in mid February. He was 5 weeks old. He was beautiful and healthy. Absolutely perfect. He is now a high school teacher and has taken the school Academic team to state several times now; smart and a good, decent man. I have a grand daughter who is just as gifted as her dad! You can tell I'm proud.
I think the hardest part of it all was the not knowing what would happen afterwards. Would it return? I lived my twenties going through full blown menopause because they didn't believe they could give me hormone replacement because of the cancer and wondering each day if the cancer would come back. I had no one to talk to. My parents told me to, “Shut up....we don't talk about it anymore”. I went almost FOURTY YEARS with no one to talk to about what happened to me. I knew it was rare but I knew that there had to be other women out there who had gone through the same thing. I searched the internet in the mid nineties and found very little about it.
One day in August of 2012, after having a dream that my husband was killed and I was alone, I couldn't let it go. I got on-line and looked up Hydatidiform Mole and up came a Facebook page. I joined the group and I had to live it all over through the women to understand what happened to me. That's where I met Carol Beaumont and Cindy Lupica. Cindy soon started up another group and Carol and I joined it. We have shared our stories and became bonded in a way that no one can ever understand unless they went though it. Kathleen joined the group later and she and I bonded because we both understood the feeling of never being able to carry a baby. I wondered if meeting in person would be awkward but it wasn't! When we met it was like we had always known one another. We are sisters! Bonded by a disease that tried to beat us, but we refused to let it! We will always have this bond. God blessed me in making this meeting possible. I will give him all of the praise and glory for it.
We have to get this message out so that doctors and women can watch for the early signs. Ultrasounds have made early diagnosis possible but they have to realize how dangerous it is to not act quicker and they need to learn to listen to every detail a woman is telling them."
My nausea started at six weeks. I went for my first doctor visit at eight weeks. It was already getting bad enough to ask him for something. He said I looked good but he didn't pick up a heartbeat which was not unusual. Over the next month the nausea became relentless. I would wake out of a sound sleep choking with projectile vomiting. I called the doctors office several times and tried to get into the doctor and was always put off. I asked all of the women I knew if it was normal and they all said it was and it would go away after my first trimester. It didn't.
For my twelve week appointment the doctor was out so I saw the nurse. She said I lost ten pounds but not to worry about it. She gave me more nausea meds and told me to come back in four weeks. Two days later I started bleeding. I called the office and the receptionist said the doctor was out again and the nurse said to lie down and prop my feet up if it got worse to go to the hospital. It stopped but started again the next day. Same story when I called the next day....lie down and prop your feet up. It stopped after a few minutes. Then the nausea got even worse and the bleeding became a daily occurrence.
At one point during it all it was so bad that I finally asked my mom for the name of her GYN specialist and she quickly told me that he wasn't taking any new patients. She told me what I was doing was normal because she did the same thing throughout her pregnancy with my sister. Once again I called the office and asked to see the doctor. The receptionist held out the phone and said, “It's the Hopper girl again!" I realized then that they thought I was acting like a big baby. No one believed me. My mom said it was normal and the receptionist dismissed me. Even my husband said I was acting like a baby. He said other women had babies all of the time and didn't act the way that I was. Out of anger he said that I needed to “grow up”. So I made myself get up and move even when my vision went black and I had to sit back down and put my head between my knees. It took me several hours that night to clean my house and take a bath and wash my hair, which I hadn't done in two weeks. I looked at myself and my house and I thought that they were right and he had a reason to be angry with me. So each day I forced myself to get up and do what I could even if it took all day.
I did call the office one more time to tell them that my sides were hurting me and asked if it was normal. Once again I got the same reaction from them so I quit calling.
When I was due for my sixteen week check up they called and canceled my appointment making it for October 24 because the doctor was going on vacation for the next two weeks and they had to shuffle us all around so it was three weeks longer for me to see him.
I was feeling a little better. The nausea had eased up enough for me to actually go shopping one day for baby things. The spotting continued daily but never got worse so I thought that I would be able to handle the rest of the pregnancy. My belly started to grow really fast and I started feeling movements but it didn’t feel like everyone said it would feel. I felt a movement here and a pull there not the butterfly feeling that I was told to expect.
The night before my doctor’s appointment, I was in my eighteenth week. I woke around midnight to a soaked bed. I walked to the bathroom embarrassed thinking that I had lost control of my bladder, so when I turned on the light I was shocked when I realized that I was covered with blood. My long flannel gown was soaked. It was running down my legs and dripping onto the floor. I screamed for my husband and he came running nearly fainting when he saw all of the blood. While he was getting me some dry clothes I sat on the toilet and I passed two large grapefruit-size masses that I thought was the baby. I scooped them out of the toilet without looking at them and took them with me. The ER doctor said they were blood clots and he started questioning me. He said my uterus was at least eight-and-half months along. He called my doctor, who was in the hospital and argued with him that there was something wrong with me and that I needed to be seen.
Once I was upstairs my doctor questioned me and asked me how much blood I lost. I said a quart. He literally laughed at me and said, “It only looked like that much.” The next day I was given a paper to sign for two blood transfusions. In the end they said I was definitely carrying more than two babies and they had strong heartbeats. Three days later he sent me home with complete bed rest for the rest of my pregnancy.
The next morning after going home I woke to a wet bed again. I went back to the hospital in a ambulance. Later that evening my doctor came in and told me to get up and walk around to see if I would start bleeding again because he was leaving the next day for Hawaii. He said if I started hemorrhaging again I would probably bleed to death before I got to the hospital.
I lived in a small town with only two doctors who delivered babies; my doctor and the other whom was also a surgeon. It was a Sunday and the surgeon had been off all day.
I got up around five that evening and walked down the hallway then went back to bed. At exactly 7 pm my mom and husband walked in my door just as I got an itch at the back of my neck. When I reached up to scratch it I pulled up my hand and blood was dripping from my fingers. My mom screamed and my husband ran from the room to get a nurse. The nurse rushed in and threw the covers back and found me laying in a puddle of blood. I remember her running from the room and then I went unconscious. I only remember bits and pieces after that.
I remember waking and the nurse holding my face telling me not to push no matter how much it hurt. The pain was excruciating! It felt like someone was pulling my insides out with their bare hands. I saw the doctor standing at the foot of the bed; total fear was written on his face. Another time I woke up and saw a nurse squeezing a bag of blood above me. I heard them say they were waiting for the surgeon to get to the hospital. I woke later in the operating room while they were operating on me and I told the doctor that I was going to be sick and he patted my hand and told me that it just felt that way. Before he could react I vomited all over him. He told me not to worry about it I had warned him. He even wiped my face with a wash cloth. Before I left the operating room I asked him about my babies and he shook his head no. I told him maybe the next time I would carry full term. He just patted my hand.
After I came out of surgery, I woke in a room and the surgeon was standing over me. I'll never forget what he said. He said. “Elaine, we ran into a problem. You have cancer. I had to remove both of your ovaries and we have to send you to Bethesda, Maryland”. I don't remember anything else he said because I passed out again.
When I woke up next my husband was standing over me. He was crying and the first thing he said was, “I’m sorry. I didn't know you were so sick”. I told him if he didn't want me because I couldn't give him babies I would understand. He said, “Elaine, that isn't how love works. I'm not going anywhere”. And he didn't. We have been married for 46 years.
It took three days for me to be able to talk about what happened. I crawled inside of myself and I didn't open up until my husband started talking about us adopting. He gave me a reason to go on living and fighting. He gave me my dreams back.
I learned the fourth day that I had a molar pregnancy and the two doctors had no idea what it was when they opened me up and these things spilled out of me. They said my ovaries were the size of baseballs covered with large cysts and molar tissue that had metastasized.That's why my sides were hurting so bad. So they removed my ovaries and scraped my uterus, deciding to leave it in, then sewed up the incision that started at my belly button and went all of the way down.
When I woke up and asked the doctor about my babies he knew that there would never be any more babies for me. I found out that there were no babies at all just the Hydatiform Mole. They said there was over seven pounds of the molar tissue that filled three large pans. When I went for my first doctors visit I weighed 145 pounds (65kg), I’m 5’7". When I left the hospital eleven days later with my arms empty, it was the day before my twentieth birthday, I weighed 120 pounds (54 kg). I was already going through full blown menopause and lactating at the same time.
I did go to my mom's specialist, Raymond S. Lupse, in Youngstown, Ohio. My dad called him and asked him the day after my surgery if he would take me as his patient and send me where he thought that I would need to go. He didn't hesitate. He said to bring me out as soon as I was released from the hospital.
When I went for my first visit with him he asked me why I didn't call him when the nausea got so bad. He said he would have seen me as a patient. He said the extreme nausea and the bleeding were the first signs of the disease. When he examined me the first time before removing my stitches, he found five large precancerous lesions on my vaginal walls that he had to cut out and cauterize with no anesthesia. He found several of my stitches that were criss-crossed and tied making it almost impossible to remove. He was furious! When he finished with his exam, he told me to come to his office. When I sat down he looked across at me and said, "If you want to go to court I will gladly go with you. What they did to you was nothing but gross neglect. All of the signs were there that something was wrong and they didn't listen to you." What he said made me feel better about myself, but in the end I knew that it wouldn't change anything so I told him no. I just wanted to put it all behind me not knowing three months later to the day that I had my first surgery that I would be right back where I was before only in a different hospital.
Even after receiving nine pints of blood in the hospital he said my blood work showed I was severe anemic. He didn't want to give me any more blood instead he put me on six iron tablets a day and planned my next surgery to remove my uterus the week before Christmas. That didn't happen because the nurses were on strike at the hospital he practiced at. The day after Christmas I started lightly bleeding again when it continued he took me into his office on January 2 and did a D&C with no anesthesia. Nothing came back from pathology. Three weeks later I woke to a soaked bed. I had started hemorrhaging again. Dad called Dr. Lupse at home and he said said the nurses were still on strike he would do what he could. He called back and said he got the hospital to take me because of it being a emergency.
He came into the ER and couldn't believe it when I told him how much blood I lost. He did blood work and came into my room and once again someone was mad at me....he snapped at me....Your dad said you were bleeding. You weren't bleeding you were hemorrhaging! There's a big difference! I started to cry and he walked over to me and placed his hand over mine. I told him I was sorry. All I had done was make everyone mad and inconvenience everyone and all I wanted was a baby. He apologized to me. He said I was right but it wasn't me that he was angry with it was the whole situation. He ordered me three pints of blood and three days later he operated and was shocked when he found out that the Hydatiform Mole was not only back but had penetrated the uterus wall and he found a second cancer called Choriocarcinoma. The man cried. He said he was so sorry. He said he was turning me over to a hematologist to find out if it had gotten into the blood stream.
I did question Dr. Lupse on my first visit about all that had happened to me and he told me that the heart beats that they heard was probably blood rushing through the stems that fed the cyst type tumors. The movements I felt were the tumors shifting in my uterus. The profuse hemorrhaging came from the stems tearing away from the weakened uterus walls.
I asked him about the Choriocarcinoma and he said that he could only find the case studies of seven other women with metastasized invasive hydatidiform mole and choriocarcinoma. Seven. This is where the internet would have come in handy. I was the eighth and I was told the other seven didn't survive. He said as long as it didn't get into my blood stream we had nothing to worry about. If it did, with chemo, two years would be a long life for me. He told my family that women usually died within one year of getting the disease.
Dr. Lawrence M. Pass, was Director of Hematology at Youngstown Northside and Southside Hopsitals at the time became my oncologist. This man was the one that got me through it all, emotionally and physically. He is and will always be my hero. He refused to call me Elaine, because my first name is Rosella so he called me Rosee. So it was Rosee who went through it all and came out the other side.
Dr. Pass had affiliation with Northwestern in Chicago, Illinois, teaching their interns. He used his interns and reached out to the Cleveland Clinic in Ohio and Northwestern in Chicago, Illinois setting up teams to decide how to treat me. They decided to put me on Methotrexate. Even with the drug they never expected me to survive they just expected to prolong my life.
They didn't know my God had other plans and I wasn't giving up. I wanted a baby and had hopes and dreams to live on! It took seven long months of hard trial and error with the new drug to get me to zero. Dosing and administering it were all decided as they went along. Finally settling on hitting me hard with five days on IV every third week. My first blood test that went to Chicago showed my level to be 400, this was eight months after getting pregnant and three and half months after having my ovaries removed. They had no way of gauging my body’s reaction because the women before me all had died. I was the first as far as they knew. They did chest x-rays every third week and they saw nothing but they knew it had metastasized because of the elevated HCG level. It was there. Without CT scans, ultra sounds or MRI in those days they never knew where it metastasized to. They were going blindly through it all. The internet has opened a wealth of information for the doctors today!
I surprised them all. I made it! My doctor was the greatest, not only did he get me through the chemo, four years later he helped us adopt our five week old son. Ohio had the strictest adoption rules of all the states back then. You could only adopt through the state run adoption agency, a Catholic adoption service or family members, they kept turning us down once they heard that I had cancer, even after I finished my treatments. Dr. Pass got angry after four years and said he was going to go to them himself because, quote. "You have been through hell and back and this just isn't right to do you this way. Anyone can get cancer, even a new mother so it isn't fair to you to deny you a baby when you have been testing 0 for this long." I don't know what he said to them but the next time we called the office they told us to come to their office and fill out the paper work, and they would look it over. That was the spring of 1977. They did our home study that fall and on February 1, 1978, she called and said we had been accepted as adoptive parents and were put on the waiting list. She said it was a 5-10 year waiting time. We knew people who had been on the list for several years and still hadn't gotten a baby. On March 23...the next month, the phone rang and I answered it. It was our case worker, she said she was calling to tell us that they had a baby for us. It was a baby and it was boy and was born in mid February. He was 5 weeks old. He was beautiful and healthy. Absolutely perfect. He is now a high school teacher and has taken the school Academic team to state several times now; smart and a good, decent man. I have a grand daughter who is just as gifted as her dad! You can tell I'm proud.
I think the hardest part of it all was the not knowing what would happen afterwards. Would it return? I lived my twenties going through full blown menopause because they didn't believe they could give me hormone replacement because of the cancer and wondering each day if the cancer would come back. I had no one to talk to. My parents told me to, “Shut up....we don't talk about it anymore”. I went almost FOURTY YEARS with no one to talk to about what happened to me. I knew it was rare but I knew that there had to be other women out there who had gone through the same thing. I searched the internet in the mid nineties and found very little about it.
One day in August of 2012, after having a dream that my husband was killed and I was alone, I couldn't let it go. I got on-line and looked up Hydatidiform Mole and up came a Facebook page. I joined the group and I had to live it all over through the women to understand what happened to me. That's where I met Carol Beaumont and Cindy Lupica. Cindy soon started up another group and Carol and I joined it. We have shared our stories and became bonded in a way that no one can ever understand unless they went though it. Kathleen joined the group later and she and I bonded because we both understood the feeling of never being able to carry a baby. I wondered if meeting in person would be awkward but it wasn't! When we met it was like we had always known one another. We are sisters! Bonded by a disease that tried to beat us, but we refused to let it! We will always have this bond. God blessed me in making this meeting possible. I will give him all of the praise and glory for it.
We have to get this message out so that doctors and women can watch for the early signs. Ultrasounds have made early diagnosis possible but they have to realize how dangerous it is to not act quicker and they need to learn to listen to every detail a woman is telling them."
