Meet Elyse, diagnosed 2009, Palm Beach
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"I’ve been meaning to write this story for a while now. I love how Cindy showcases choriocarcinoma. No case of choriocarcinoma is ever simple and mine was no exception.
“Honey I only have 3-4 years to live,” my mother said. I’ll never forget where we were when she said that either we were sitting on my porch looking at the pool. My mother said this so matter-of-factly, like she was talking about what car to buy. Unfortunately she wasn’t; she was talking about her breast cancer diagnosis that had spread. She had found a lump two years prior; unfortunately, she did not have health insurance and was unable to go get checked. This was before the marketplace insurance, and before social media really took off, so it wasn’t that easy to find free places without doing some digging. She was 46. I don’t think hearing your mom is dying of cancer is easy at any age but at 23 years old, it’s like you were getting cheated.
As the months went on I tried thinking of a way to do something where she would die happy. During this time, I met and fell in love with someone and quickly thought a grandchild would be perfect for my mom. At the time, I thought the man that I was with was the perfect partner and he was game to try. I fell pregnant right away and miscarried. Shortly before my second trimester, I spoke to my doctor about the loss and he said to wait three months before trying again, leaving me high. I didn’t listen and got pregnant again the next month. Now, I’ll never know if not waiting long enough or just fate led me to what happen next. I will always wonder.
I became pregnant the next month and was super excited. I made an appointment with my gynecologist for an ultrasound on my eight-week mark. As I laid down on the ultrasound table and the tech did my scan, we couldn’t find anything; no heartbeat, no sack-nothing. The text said it was early days, and that could be normal although my hCG was high enough where it was still odd. I knew enough about pregnancy to know that sometimes you can’t see things right away and left, not thinking twice about it until I got a call from my gynecologist a few hours later.
He told me he would meet me at the emergency room and to get there ASAP. He said my hCG was way too high for someone who didn’t have a sack. He was afraid it was an ectopic pregnancy. I already knew what that meant and that I would probably have to have surgery. It was upsetting, but being who I was, I accepted what was. However, of course, it wasn’t that simple. They couldn’t find a sack or bump on my fallopian tubes but there was something in my uterus. My doctor decided to go ahead with an exploratory surgery.
I was wheeled into the operating room at midnight. I’ll always remember this because I remember thinking it was so late; he had just delivered twins and now he was going to cut me open. I even remember joking to him that if he wanted to do some speed I wouldn’t judge him as I needed him to be awake while he worked on me. Everyone laughed and that was the last thing I remember before being knocked out by the anesthesiologist.
I don’t know how long I was in surgery, but I do remember waking up in the most excruciating pain I’ve ever been in my entire life. The morphine drip attached did nothing. The nurse advised me that if I didn’t calm down she would put me into the ICU. I don’t know why but that made me calm down enough where I passed out. I woke up a few hours later in pain still but I was able to at least breathe without dying inside.
The next morning my doctor came in and he said they found some weird mass and sent it to the lab and that they would also monitor my hCG levels. I honestly don’t remember what I asked him as I was in pain.
Three days later I went home and my doctor called to say my hCG went down to 300. Being that it was at 16,000 prior we figured it would go down to zero pretty quick since it was already at 300. I continued living and healing all the while my mom was at chemo and I was unable to spend time with her and she was unable to be there and comfort me. About eight weeks went by when I woke up one morning extremely nauseous as if I had morning sickness it went on for three days in a row and something told me there was something wrong.
I made an appointment with my doctor and told him to draw and run it again. During this time I received a call that my cousin had died I was devastated and packing for the funeral about to head to the airport when I received a call from my doctor. He said at least your hCG is at 15,000 I said 15,000 are you serious?! he said no you misheard me it’s at 50,000. I was blown away but at least I knew why I had not been feeling good the past few days I told him I was heading to a funeral and then when I got back I would start treatment only a few days I said. He said you don’t have a few days I really thought he was kidding but he wasn’t it was then I had to tell my family that I had cancer called choriocarcinoma. They wanted to stay behind and be there for my first treatment but I told them to be there for my cousin and I would be fine with everyone else that stayed behind.
I was admitted to the hospital they immediately found another mass scheduled surgery and then treatment, everyone knows methotrexate is the first go around for choriocarcinoma. Luckily my second surgery was not nearly as painful as my first and I was able to function pretty quickly afterwards and start my treatment.
A month went by and we ran my numbers they had no breach 60,000 it would become clear that the additional surgery and the methotrexate we’re not cutting it. I would have to go full throttle, known in the oncology world as EMA/CO. Short for the drugs known as Etoposide, Methotrexate, and Dactinomycin Alternating With Cyclophosphamide and Vincristine. My doctors made it clear it would not be the easiest route, I would likely get sick and lose my hair.
But the biggest downside was without the reverse treatment I would die. For those who are not acquainted with the term reverse treatment it means they reverse the toxicity of the chemo so it doesn’t overload your kidneys and kill you. Yeah. Insane right? Most doctors did not trust their patients to take the reversal medication at home and you were required to stay in the hospital for it. I spent a good two weeks out of every month in the hospital for at least three months, maybe longer; at that point the days blend together. Ironically, it was during that time I would figure out what I was meant to do the rest of my life (more on that later on).
Again you have to remember my mom wasn’t able to come visit me because she was at chemo fighting for her own life luckily my husband at the time took excellent care of me and I had a sweet at Palm Beach Cancer Center with a view overlooking Palm Beach Island not to mention a guest suite for guests that wanted to spend the night. There were definitely worse places to get treatment.
Eventually, I did beat the cancer. That very same week my best friend killed herself. It felt like a half-feet, at a loss, all-in-one, because it was.
A few months later, my husband wanted to try to have children again; however, at that point, he wasn’t the man I married. He started drinking and becoming abusive; I had just literally beaten cancer and now I had to fight for my life again against this psycho. Don’t get me wrong, I wasn’t a perfect wife, but at the same time, it wasn’t like I had a light load on my mind. Many months of fighting and sued, it just got worse and worse both verbally and physically. I won’t go into the details but I will say had I stayed I don’t think I would be where I am today. In fact, I know I wouldn’t. A lot of my friends always ask me why I stayed as long as I did. Moreover, these are people who never had cancer and never had to worry about the fear of being without health insurance.
Finally, after one giant fight, the judge granted me the house and my ex moved out. I moved my mother in so that I could care for her on what had now become her last few months of life. As awful as my husband was, at least he understood why I needed the house. He allowed me to spend the last few months my mom had a life in the privacy of our own home. My younger brother eventually came down as well as a cousin, and together, the three of us cared for my mother until her final breath.
Eventually, my divorce proceedings moved forward and there were some bumpy roads. Not only had I just beaten cancer myself but I also went through an awful divorce. I had lost my mother. I was only 27.
After a lot of soul-searching, I decided to go back to college. Education with something my mom felt very strongly about, and I knew what I wanted to do in life. I love creativity and design so I went back to school, this time for fashion design. Now remember when I told you my fate was sealed for me during chemo?
During one of my treatment days, (at this point I was finally able to convince my doctors to do outpatient by promising I would take my back up meds), I was trying to find something to wear but couldn’t find a shirt that would allow easy access to my lines; not to mention, when I was in the hospital how hard it was to find clothing that would still allow the doctors access while keeping me comfortable. Hospital gowns definitely weren’t where it was at. So I cut up a favorite designer shirt added buttons that would allow me to snap the shirt down the side and headed to treatment.
As you might be able to guess, when I started design school I started reimagining patient wear. I graduated in 2015 with my degree in fashion design, got awards for best niche market and best overall design. By 2018, I had one in award from a biotech for some of my design work and Florida Cancer, and research called my products an answer to a gap in the market. I had also been on the news in cities across the country.
My goal one day is to completely redo patient where overall until then my focus is creating access shirts that are not only comfortable but fashionable; no one ever said chemo had to be dull. Recently a pastor at a church that I attend said sometimes our mission is found in our misery and it’s probably the truest statement I’ve ever heard in my entire life.
2019 was supposed to be my 10 year cancer free anniversary. I went in for a routine pap smear not thinking anything, and just like last time, things escalated quickly. The good news was that whatever my doctor had found, we had caught it just in time because it was just about to encroach stage zero cervical cancer. I had surgery to remove the damage cell area. No other treatment was required except the HPV vaccine. It’s easy to talk s**t about vaccines but when you’re told you have some thing that could affect your ability to have children and there’s a vaccine that could help stop the growth you’re going to consider it.
Post surgery over a time span of a year, I received my vaccines this winter will be my two year check-up mark and I am praying the results wiill still come back with a negative margins.
As for my company it started taking off even more so this year. My gynecologist, who found both my cancers, even sent his only daughter to come work for me; that’s how much he believed in me and my products. It was one of the biggest complements I could receive.
Today I am grateful for my amazing team. At the height of the pandemic, they worked alongside me 18 hour days helping to make masks that we developed alongside our in-house scientist and MD for hospitals and family’s around the country. Things aren’t always perfect or easy but I do truly believe God put us where we are meant to be and that he has a mission for all of us. Ironically, as rare as chorio is, a good friend of mine from high school was also diagnosed with it a few years after me. I am definitely going to try and get her to share her amazing story and be featured as well.
I don’t know if I will ever become a mother. Sometimes, after a few days with nieces and nephews, I even wonder if it’s something I still want lol. Running the company takes a lot out of me and I know children need and deserve your full attention, not to mention, I’ve pretty much remained single since my divorce 10 years ago (who could blame me). I know for many chorio warriors, children are something they still desire. I pray so hard that you warriors receive what is in your heart. The Lord knows what is in our hearts and wants us to flourish and be happy. I pray every single one of you ladies find happiness every single day, even if it’s something basic like finding the last bar of ice cream in the freezer.
Be well.
To learn more about my company and our patient wear goals for the future please feel free to visit:
www.lifetackled.com
“Honey I only have 3-4 years to live,” my mother said. I’ll never forget where we were when she said that either we were sitting on my porch looking at the pool. My mother said this so matter-of-factly, like she was talking about what car to buy. Unfortunately she wasn’t; she was talking about her breast cancer diagnosis that had spread. She had found a lump two years prior; unfortunately, she did not have health insurance and was unable to go get checked. This was before the marketplace insurance, and before social media really took off, so it wasn’t that easy to find free places without doing some digging. She was 46. I don’t think hearing your mom is dying of cancer is easy at any age but at 23 years old, it’s like you were getting cheated.
As the months went on I tried thinking of a way to do something where she would die happy. During this time, I met and fell in love with someone and quickly thought a grandchild would be perfect for my mom. At the time, I thought the man that I was with was the perfect partner and he was game to try. I fell pregnant right away and miscarried. Shortly before my second trimester, I spoke to my doctor about the loss and he said to wait three months before trying again, leaving me high. I didn’t listen and got pregnant again the next month. Now, I’ll never know if not waiting long enough or just fate led me to what happen next. I will always wonder.
I became pregnant the next month and was super excited. I made an appointment with my gynecologist for an ultrasound on my eight-week mark. As I laid down on the ultrasound table and the tech did my scan, we couldn’t find anything; no heartbeat, no sack-nothing. The text said it was early days, and that could be normal although my hCG was high enough where it was still odd. I knew enough about pregnancy to know that sometimes you can’t see things right away and left, not thinking twice about it until I got a call from my gynecologist a few hours later.
He told me he would meet me at the emergency room and to get there ASAP. He said my hCG was way too high for someone who didn’t have a sack. He was afraid it was an ectopic pregnancy. I already knew what that meant and that I would probably have to have surgery. It was upsetting, but being who I was, I accepted what was. However, of course, it wasn’t that simple. They couldn’t find a sack or bump on my fallopian tubes but there was something in my uterus. My doctor decided to go ahead with an exploratory surgery.
I was wheeled into the operating room at midnight. I’ll always remember this because I remember thinking it was so late; he had just delivered twins and now he was going to cut me open. I even remember joking to him that if he wanted to do some speed I wouldn’t judge him as I needed him to be awake while he worked on me. Everyone laughed and that was the last thing I remember before being knocked out by the anesthesiologist.
I don’t know how long I was in surgery, but I do remember waking up in the most excruciating pain I’ve ever been in my entire life. The morphine drip attached did nothing. The nurse advised me that if I didn’t calm down she would put me into the ICU. I don’t know why but that made me calm down enough where I passed out. I woke up a few hours later in pain still but I was able to at least breathe without dying inside.
The next morning my doctor came in and he said they found some weird mass and sent it to the lab and that they would also monitor my hCG levels. I honestly don’t remember what I asked him as I was in pain.
Three days later I went home and my doctor called to say my hCG went down to 300. Being that it was at 16,000 prior we figured it would go down to zero pretty quick since it was already at 300. I continued living and healing all the while my mom was at chemo and I was unable to spend time with her and she was unable to be there and comfort me. About eight weeks went by when I woke up one morning extremely nauseous as if I had morning sickness it went on for three days in a row and something told me there was something wrong.
I made an appointment with my doctor and told him to draw and run it again. During this time I received a call that my cousin had died I was devastated and packing for the funeral about to head to the airport when I received a call from my doctor. He said at least your hCG is at 15,000 I said 15,000 are you serious?! he said no you misheard me it’s at 50,000. I was blown away but at least I knew why I had not been feeling good the past few days I told him I was heading to a funeral and then when I got back I would start treatment only a few days I said. He said you don’t have a few days I really thought he was kidding but he wasn’t it was then I had to tell my family that I had cancer called choriocarcinoma. They wanted to stay behind and be there for my first treatment but I told them to be there for my cousin and I would be fine with everyone else that stayed behind.
I was admitted to the hospital they immediately found another mass scheduled surgery and then treatment, everyone knows methotrexate is the first go around for choriocarcinoma. Luckily my second surgery was not nearly as painful as my first and I was able to function pretty quickly afterwards and start my treatment.
A month went by and we ran my numbers they had no breach 60,000 it would become clear that the additional surgery and the methotrexate we’re not cutting it. I would have to go full throttle, known in the oncology world as EMA/CO. Short for the drugs known as Etoposide, Methotrexate, and Dactinomycin Alternating With Cyclophosphamide and Vincristine. My doctors made it clear it would not be the easiest route, I would likely get sick and lose my hair.
But the biggest downside was without the reverse treatment I would die. For those who are not acquainted with the term reverse treatment it means they reverse the toxicity of the chemo so it doesn’t overload your kidneys and kill you. Yeah. Insane right? Most doctors did not trust their patients to take the reversal medication at home and you were required to stay in the hospital for it. I spent a good two weeks out of every month in the hospital for at least three months, maybe longer; at that point the days blend together. Ironically, it was during that time I would figure out what I was meant to do the rest of my life (more on that later on).
Again you have to remember my mom wasn’t able to come visit me because she was at chemo fighting for her own life luckily my husband at the time took excellent care of me and I had a sweet at Palm Beach Cancer Center with a view overlooking Palm Beach Island not to mention a guest suite for guests that wanted to spend the night. There were definitely worse places to get treatment.
Eventually, I did beat the cancer. That very same week my best friend killed herself. It felt like a half-feet, at a loss, all-in-one, because it was.
A few months later, my husband wanted to try to have children again; however, at that point, he wasn’t the man I married. He started drinking and becoming abusive; I had just literally beaten cancer and now I had to fight for my life again against this psycho. Don’t get me wrong, I wasn’t a perfect wife, but at the same time, it wasn’t like I had a light load on my mind. Many months of fighting and sued, it just got worse and worse both verbally and physically. I won’t go into the details but I will say had I stayed I don’t think I would be where I am today. In fact, I know I wouldn’t. A lot of my friends always ask me why I stayed as long as I did. Moreover, these are people who never had cancer and never had to worry about the fear of being without health insurance.
Finally, after one giant fight, the judge granted me the house and my ex moved out. I moved my mother in so that I could care for her on what had now become her last few months of life. As awful as my husband was, at least he understood why I needed the house. He allowed me to spend the last few months my mom had a life in the privacy of our own home. My younger brother eventually came down as well as a cousin, and together, the three of us cared for my mother until her final breath.
Eventually, my divorce proceedings moved forward and there were some bumpy roads. Not only had I just beaten cancer myself but I also went through an awful divorce. I had lost my mother. I was only 27.
After a lot of soul-searching, I decided to go back to college. Education with something my mom felt very strongly about, and I knew what I wanted to do in life. I love creativity and design so I went back to school, this time for fashion design. Now remember when I told you my fate was sealed for me during chemo?
During one of my treatment days, (at this point I was finally able to convince my doctors to do outpatient by promising I would take my back up meds), I was trying to find something to wear but couldn’t find a shirt that would allow easy access to my lines; not to mention, when I was in the hospital how hard it was to find clothing that would still allow the doctors access while keeping me comfortable. Hospital gowns definitely weren’t where it was at. So I cut up a favorite designer shirt added buttons that would allow me to snap the shirt down the side and headed to treatment.
As you might be able to guess, when I started design school I started reimagining patient wear. I graduated in 2015 with my degree in fashion design, got awards for best niche market and best overall design. By 2018, I had one in award from a biotech for some of my design work and Florida Cancer, and research called my products an answer to a gap in the market. I had also been on the news in cities across the country.
My goal one day is to completely redo patient where overall until then my focus is creating access shirts that are not only comfortable but fashionable; no one ever said chemo had to be dull. Recently a pastor at a church that I attend said sometimes our mission is found in our misery and it’s probably the truest statement I’ve ever heard in my entire life.
2019 was supposed to be my 10 year cancer free anniversary. I went in for a routine pap smear not thinking anything, and just like last time, things escalated quickly. The good news was that whatever my doctor had found, we had caught it just in time because it was just about to encroach stage zero cervical cancer. I had surgery to remove the damage cell area. No other treatment was required except the HPV vaccine. It’s easy to talk s**t about vaccines but when you’re told you have some thing that could affect your ability to have children and there’s a vaccine that could help stop the growth you’re going to consider it.
Post surgery over a time span of a year, I received my vaccines this winter will be my two year check-up mark and I am praying the results wiill still come back with a negative margins.
As for my company it started taking off even more so this year. My gynecologist, who found both my cancers, even sent his only daughter to come work for me; that’s how much he believed in me and my products. It was one of the biggest complements I could receive.
Today I am grateful for my amazing team. At the height of the pandemic, they worked alongside me 18 hour days helping to make masks that we developed alongside our in-house scientist and MD for hospitals and family’s around the country. Things aren’t always perfect or easy but I do truly believe God put us where we are meant to be and that he has a mission for all of us. Ironically, as rare as chorio is, a good friend of mine from high school was also diagnosed with it a few years after me. I am definitely going to try and get her to share her amazing story and be featured as well.
I don’t know if I will ever become a mother. Sometimes, after a few days with nieces and nephews, I even wonder if it’s something I still want lol. Running the company takes a lot out of me and I know children need and deserve your full attention, not to mention, I’ve pretty much remained single since my divorce 10 years ago (who could blame me). I know for many chorio warriors, children are something they still desire. I pray so hard that you warriors receive what is in your heart. The Lord knows what is in our hearts and wants us to flourish and be happy. I pray every single one of you ladies find happiness every single day, even if it’s something basic like finding the last bar of ice cream in the freezer.
Be well.
To learn more about my company and our patient wear goals for the future please feel free to visit:
www.lifetackled.com
