Until it is complete, you can check out the story below, which was taken from a Facebook "Note" I wrote back in 2008. A lot has changed, new complications have arisen, and some have become worse. So stay tuned to my other blog, link provided above, to get the full story.
Over the past two years, I've had a lot of people ask me how I knew something was wrong, what I went through, what type of cancer I had, what my prognosis was, etc. I have ABSOLUTELY no problem talking to people about it and answering questions. However, the whole story is pretty lengthy so I've decided to write it all down. After reading it, if you still have questions or want more detail in a certain area, please feel free to ask. I like sharing my story in the hopes of inspiring, sharing my strength, and giving hope to those who are in my same situation.
So here is my cancer story:
In January 2006 I had had a sore throat and been severely fatigued for almost 2 months. I couldn't think of anything else that would make me so sick and tired other than mono. So I went to the Student Health Center thinking I had mono. They drew blood and sent me home. Thirty minutes later I received a call from the doctor saying my blood counts were dangerously low (hemoglobin was at 5) and they were admitting me to the hospital immediately. I stayed overnight and had a blood transfusion -- 2 units. We assumed the blood loss was occurring from a bleeding ulcer. An endoscopy a week later showed I had a tumor inside my stomach, attached up near the esophagus about the size of a golf ball. The bottom was ulcerated and bleeding and that is where the blood was from.
So here is my cancer story:
In January 2006 I had had a sore throat and been severely fatigued for almost 2 months. I couldn't think of anything else that would make me so sick and tired other than mono. So I went to the Student Health Center thinking I had mono. They drew blood and sent me home. Thirty minutes later I received a call from the doctor saying my blood counts were dangerously low (hemoglobin was at 5) and they were admitting me to the hospital immediately. I stayed overnight and had a blood transfusion -- 2 units. We assumed the blood loss was occurring from a bleeding ulcer. An endoscopy a week later showed I had a tumor inside my stomach, attached up near the esophagus about the size of a golf ball. The bottom was ulcerated and bleeding and that is where the blood was from.
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| Photos from my first endoscopy when the tumor was only golfball sized. |
The nurse in Columbia, Missouri at University Hospital told my mother I needed to be taken back to St. Louis and treated at Wash U/Barnes-Jewish because I needed to be with the best of the best. So we went home and I had CT scans upon multiple endoscopies and biopsies. The biopsy came back benign. Yay, right?
On February 14, 2006 I went in for surgery. They removed what had now grown to a tangerine-sized tumor as well as 1/3 of my stomach and the bottom part of my esophagus. I was lucky in that the doctor did not have remove the ENTIRE stomach as he had originally planned and he did not have to crack my chest as he had also originally planned.
Immediately after surgery my surgeon told my parents that it was in fact malignant. I was in ICU for about 8 days in which I do not remember a thing. I was in the hospital a total of 14 days with a giant cut down my stomach, a feeding tube going into my small intestine and 2 drains coming out of my stomach on the right side. I went through physical and occupational therapy while there to learn how to sit and walk and stand and everything again. I was unable to use my abdomen for about 8 weeks although full recovery took about 12 weeks. I lost 20 pounds and eating was a difficult task because things would go down and come back up and get stuck in my esophagus causing me to throw up. I also couldn't eat much since my stomach was now so tiny. While at home, my mother had to hook me up to my feeding tube every night for about 10-12 hours because I wasn't able to eat much by mouth.The recovery was HORRENDOUS! I was constantly crying and in pain. There were times I told my mother I just wanted to die..the pain was too much to take. She wouldn't let me though. She held my hand and kept me strong. I went through withdrawal symptoms from my pain killers and developed HORRIBLE anxiety (that I still deal with today.)
After about 3 months I finally got the feeding tube taken out...which was the day before radiation started. I went through 6 weeks of radiation, everyday Monday through Friday. That really knocked me out. It had FRIED my esophagus and I barely ate. On top of this, I had lost almost 7 pounds, which if you know me, that's a lot to lose.
After radiation I was given 6 weeks to recover and try to gain some weight but that did not happen since I was still experiencing these eating problems. I had numerous endoscopies which included dilation of my esophagus but they didn't help much.
After those 6 weeks I had my portacath put in. This is where I received all chemotherapy through. It was basically like an internal IV but they could take blood OUT of it (since I had to have labs tested 2 times every 3 weeks) and they could give me drugs, blood, plasma, saline, etc. through it.
I began an intense 15 week regiment of chemotherapy. I received 2 drugs (2 of the strongest) for a week, everyday for about 7 hours, and then I had 2 weeks off. Every day I left chemotherapy, I would have to leave my port accessed because we would need to run medicine through it to help protect my bladder and kidneys. I also had to take a LOT of medicine during my chemo weeks in addition to in my off weeks.
In my off weeks I traveled 2 hours back to Columbia and went to school and worked. I was determined to live my life as normal as possible regardless of how hard it was. Mizzou is a big campus and it took all I had to be able to walk around, attend classes, concentrate and study, AND WORK! Yes, I still worked in the preschool! I was always in pain from my esophagus or from my bone marrow trying to produce new blood cells. I was always so weak and tired. There were times I could not walk to chemo and I would have to use a wheelchair to get around the hospital.
Along with all of this, I had to see a reproductive endocrinologist to try to preserve my eggs since there was a chance of chemo destroying them. I was basically sent into a temporary menopausal state and had horrible hot flashes. We won't know if it worked until I try to actually have children so fingers crossed!!
I did lose my hair and that was one of the worst parts. My hair began to fall out in clumps one night. It was an emotional time for my family but we remained strong. The next day, I had my head shaved to quicken the horrible situation.
My stomach has healed nicely and as of November 20, 2007, I removed my wig and sported a short hair cut. I did not like it because I was not used to short hair, and still am not but it's better than being bald!
On February 14, 2006 I went in for surgery. They removed what had now grown to a tangerine-sized tumor as well as 1/3 of my stomach and the bottom part of my esophagus. I was lucky in that the doctor did not have remove the ENTIRE stomach as he had originally planned and he did not have to crack my chest as he had also originally planned.
Immediately after surgery my surgeon told my parents that it was in fact malignant. I was in ICU for about 8 days in which I do not remember a thing. I was in the hospital a total of 14 days with a giant cut down my stomach, a feeding tube going into my small intestine and 2 drains coming out of my stomach on the right side. I went through physical and occupational therapy while there to learn how to sit and walk and stand and everything again. I was unable to use my abdomen for about 8 weeks although full recovery took about 12 weeks. I lost 20 pounds and eating was a difficult task because things would go down and come back up and get stuck in my esophagus causing me to throw up. I also couldn't eat much since my stomach was now so tiny. While at home, my mother had to hook me up to my feeding tube every night for about 10-12 hours because I wasn't able to eat much by mouth.The recovery was HORRENDOUS! I was constantly crying and in pain. There were times I told my mother I just wanted to die..the pain was too much to take. She wouldn't let me though. She held my hand and kept me strong. I went through withdrawal symptoms from my pain killers and developed HORRIBLE anxiety (that I still deal with today.)
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| You can see where the 2 drains were on my right side |
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| This was my feeding tube |
After radiation I was given 6 weeks to recover and try to gain some weight but that did not happen since I was still experiencing these eating problems. I had numerous endoscopies which included dilation of my esophagus but they didn't help much.
After those 6 weeks I had my portacath put in. This is where I received all chemotherapy through. It was basically like an internal IV but they could take blood OUT of it (since I had to have labs tested 2 times every 3 weeks) and they could give me drugs, blood, plasma, saline, etc. through it.
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| The day I had my portacath put in...and you can see the catheter running up my neck as well. It sticks out pretty badly since I was so thin. |
I began an intense 15 week regiment of chemotherapy. I received 2 drugs (2 of the strongest) for a week, everyday for about 7 hours, and then I had 2 weeks off. Every day I left chemotherapy, I would have to leave my port accessed because we would need to run medicine through it to help protect my bladder and kidneys. I also had to take a LOT of medicine during my chemo weeks in addition to in my off weeks.
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| A night after a day of chemo with my port still accessed with the catheter hanging out...and my eyes puffy from all the drugs I received (and obviously very thin) |
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| All the medicines I took through chemotherapy and radiation. |
In my off weeks I traveled 2 hours back to Columbia and went to school and worked. I was determined to live my life as normal as possible regardless of how hard it was. Mizzou is a big campus and it took all I had to be able to walk around, attend classes, concentrate and study, AND WORK! Yes, I still worked in the preschool! I was always in pain from my esophagus or from my bone marrow trying to produce new blood cells. I was always so weak and tired. There were times I could not walk to chemo and I would have to use a wheelchair to get around the hospital.
Along with all of this, I had to see a reproductive endocrinologist to try to preserve my eggs since there was a chance of chemo destroying them. I was basically sent into a temporary menopausal state and had horrible hot flashes. We won't know if it worked until I try to actually have children so fingers crossed!!
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| tired after a week of chemo |
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| The night my hair started to fall out |
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| The day I received my beautiful wig However, a very generous man donated the most beautiful wig I could have ever imagined! It was dark, thick, long, and shiny! It was not the normal wig either! I lost my hair about 14 days after my first treatment. Then, the man bonded the wig onto my head. It was glued to my head for 30 days! Because the wig was real hair, I was able to shower in it, sleep in it, run in it, etc. And it stayed put and every 30 days I would visit him and he would reglue it! No one could tell it was a wig! |
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| another one of my beautiful wig |
| My stomach now after 2 years of healing |
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| My hair about 30 minutes after I came home from the salon...This was the first time in 16 months that I had never worn a wig!!! |
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| the back and side view of my hair |
It was absolutely HORRIBLE but here I am, had my first scan on November 20, 2006 and all was clear!!!!!!!!! I kicked it's butt!
As of May 20, 2008 I have been in remission for 18 months!!! I still get endoscopies every 4 months. I have developed a lot of scar tissue and my esophagal muscles don't work normal, so I get need to it stretched out because food still tends to get stuck, causing me to throw up. I have also developed HORRIBLE acid reflux that becomes unbearable a lot of the time...most of the time. I am always in pain.
As of now, I am doing well. I am still in remission!!! I get scanned every 4 months to make sure the cancer is gone. My eating has improved a lot. Things still get stuck but it is nowhere near as bad. I get endoscopies with dialations every 4 months to stretch my esophagus out from the scarring and stricturing. Due to the surgery, I lack an esophageal sphincter and this causes me to have absolutely horrible acid reflux. The acid constantly in my esophagus can cause ulcers and therefore esophageal cancer. I will receive the endoscopies once year to check for Barrett's syndrome which are premalignant cells. So far, things look good and there is no sign of that!
I am continuing to gain weight but it's hard seeing as I've always been thin. I've had a few other complications with things such as atypical precancerous moles, port removal and poor healing of the portacath site, extreme fatigue, heart issues, compromised immune system, etc. But I'm still going strong and being positive! I've made it past the roughest part!
After everything and my love of children, I decided I need to help others like myself. I am going to start nursing school and my goal is to become a nurse practitioner specializing in pediatric oncology :) I know it will be hard but I can't think of anyone more perfect for the job! I want to help others in the same way my nurses helped me and my family through this awful time.
I have also become very involved in Relay for Life. A few months after my diagnosis my friends and family created a team in my honor, Melzie's Warriors. I have since helped head it up and collectively we are always the biggest team at Mizzou Relay as well as being one of the top fund-raisers. This year, I was also on the committee. My mother and I had the honor of cutting the ribbon during the Opening Ceremony and leading the Survivor Lap. My mother also spoke at the event in the Fight Back Ceremony about her experience as my Caregiver (You can check out the video of her speech on my Facebook page called 'Fight Back Ceremony') She had everyone in tears. Relay is a HUGE part of my life now and this year I have been nominated by the American Cancer Society as a Hero of Hope!!!!!!!!
A little bit about my cancer...
My cancer is Leiomyosarcoma. It is VERY rare and VERY serious. Four in one million will get it. It usually occurs to women 50+. It's treated very aggressively because it is a hard cancer to fight. Which is why I was given one of the toughest regiments and the most potent drugs. Especially because mine tested higher grade (meaning it was more likely to come back) and because mine had metastasized into my bloodstream. Not much is known about it, and it's a one shot deal. They have to get it the first time around because if it returns, there are really no options. Just treatment to make life as comfortable as possible from that point on.
I received ALL care at Barnes/Wash U's Siteman Cancer Center. My parents said they were going to get the best doctors &and they did. I have a total of 6 doctors, all were awarded 'Top Docs in America' from 2005 to present :) I owe my life to my amazing surgeon, Dr. David Linehan and also to my oncologists Dr. Douglas Adkins (medical oncology) and Dr. David Mansur (radiation oncology)
As of May 20, 2008 I have been in remission for 18 months!!! I still get endoscopies every 4 months. I have developed a lot of scar tissue and my esophagal muscles don't work normal, so I get need to it stretched out because food still tends to get stuck, causing me to throw up. I have also developed HORRIBLE acid reflux that becomes unbearable a lot of the time...most of the time. I am always in pain.
As of now, I am doing well. I am still in remission!!! I get scanned every 4 months to make sure the cancer is gone. My eating has improved a lot. Things still get stuck but it is nowhere near as bad. I get endoscopies with dialations every 4 months to stretch my esophagus out from the scarring and stricturing. Due to the surgery, I lack an esophageal sphincter and this causes me to have absolutely horrible acid reflux. The acid constantly in my esophagus can cause ulcers and therefore esophageal cancer. I will receive the endoscopies once year to check for Barrett's syndrome which are premalignant cells. So far, things look good and there is no sign of that!
I am continuing to gain weight but it's hard seeing as I've always been thin. I've had a few other complications with things such as atypical precancerous moles, port removal and poor healing of the portacath site, extreme fatigue, heart issues, compromised immune system, etc. But I'm still going strong and being positive! I've made it past the roughest part!
After everything and my love of children, I decided I need to help others like myself. I am going to start nursing school and my goal is to become a nurse practitioner specializing in pediatric oncology :) I know it will be hard but I can't think of anyone more perfect for the job! I want to help others in the same way my nurses helped me and my family through this awful time.
I have also become very involved in Relay for Life. A few months after my diagnosis my friends and family created a team in my honor, Melzie's Warriors. I have since helped head it up and collectively we are always the biggest team at Mizzou Relay as well as being one of the top fund-raisers. This year, I was also on the committee. My mother and I had the honor of cutting the ribbon during the Opening Ceremony and leading the Survivor Lap. My mother also spoke at the event in the Fight Back Ceremony about her experience as my Caregiver (You can check out the video of her speech on my Facebook page called 'Fight Back Ceremony') She had everyone in tears. Relay is a HUGE part of my life now and this year I have been nominated by the American Cancer Society as a Hero of Hope!!!!!!!!
A little bit about my cancer...
My cancer is Leiomyosarcoma. It is VERY rare and VERY serious. Four in one million will get it. It usually occurs to women 50+. It's treated very aggressively because it is a hard cancer to fight. Which is why I was given one of the toughest regiments and the most potent drugs. Especially because mine tested higher grade (meaning it was more likely to come back) and because mine had metastasized into my bloodstream. Not much is known about it, and it's a one shot deal. They have to get it the first time around because if it returns, there are really no options. Just treatment to make life as comfortable as possible from that point on.
I received ALL care at Barnes/Wash U's Siteman Cancer Center. My parents said they were going to get the best doctors &and they did. I have a total of 6 doctors, all were awarded 'Top Docs in America' from 2005 to present :) I owe my life to my amazing surgeon, Dr. David Linehan and also to my oncologists Dr. Douglas Adkins (medical oncology) and Dr. David Mansur (radiation oncology)
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