Join us as Rebecca walks us through her journey with carcinoid cancer and shows us what being a survivor, and a thriver, really means. She has always challenged the perception of what a cancer patient looks like, refusing to let it define her or stop her from accomplishing her dreams. We couldn’t be more humbled to speak to such an inspirational woman, and we promise you her story is nothing short of extraordinary!
As of October 28, Rebecca married the love of her life, Clayton! We celebrate Rebecca, their love, and the incredible life that they have shared together already 💗
in her own words
I was born in Augusta, GA and then I moved to Beech Island. I am currently a marketing major in college, but I’m not exactly sure what I want to do with that yet. I know that I really enjoy talking to people and I like to style things, so I really want to start a blog. People think I’m insane because I’m constantly tweaking things and making it balanced to get it to look the way that I want it to look, but I love visual merchandising, styling, and taking beautiful pictures, so I would like to pursue something like that for my career.
Right now I work at a law firm as a legal assistant. Even though it’s a smaller law firm, it’s so much fun and I get to meet a lot of cool people and politicians like Ralph Nader, so it’s super interesting to talk to people like that on the phone. Even though I don’t want to be a lawyer, I really enjoy being around people like that. Working there has really made me open my eyes to being more successful. I believe that you turn into the kind of people that you’re around, so I really hope that some of this success and work ethic rubs off on me.
on finding love
I actually have a pretty cool love story (it’s kind of embarrassing and I get really cheesy), but I met my fiancé Clayton in high school. He was Mr. Senior, Mr. Cool, Mr. Popular, and meanwhile I was a freshman in the band. One day, he sent me a message on MySpace, and after that we met in the school parking lot and introduced ourselves (I thought it was only because I was young that he was interested!). We dated for a little while, but eventually we broke up and he joined the Marine Corps and moved away.
Fortunately, we found our way back to each other in 2014. He went through some traumatic things in the Marine Corp; he sustained a gunshot wound and almost lost his life. When we found our way back to each other, God definitely had a hand in it. Long story short, two years later we’re engaged and we’re getting married in October of next year! There are little details along the way that definitely show God having a hand in it, and it shows us that we are where we need to be.
her journey with carcinoid cancer
My symptoms began appearing in about 9th grade. I would get flushed, turn red, and then I would get splotches on my legs. It wasn’t anything major at that point, so I just brushed it off in the beginning. And then one day, it flared up when I was at home so I ran downstairs to finally show my mom what the splotches looked like. We didn’t know what was going on, so we called my pediatrician immediately.
The pediatrician just told us that, since I was in high school and going through a lot of changes, it was just anxiety. I was prescribed Celexa to help, but I didn’t take it (side note: I hate taking medicine). Over the years, my symptoms kept getting worse and occurring randomly. Because of this, I started to believe my doctor that it was just anxiety. When I was giving a speech or something in class, I would notice an outbreak, but it just wasn’t consistent in that respect. At the time, I just tried to live with it.
Then the attacks started getting worse; they started happening three times a week. They weren’t debilitating by any means, but I would get a little flushed and a little red, and I would overcome it by drinking a glass of water and sitting down. Then I would be ok about two minutes later, so there was really no cause for alarm. But still, it kept getting worse: it kept getting more frequent and my heart would start beating faster.
It got to the point where it felt like I was being squeezed through a straw because the pressure was so severe. Then I started throwing up. The worst attacks were always in the morning for some reason, and I would have about 6-10 of them every single day. My hands, my feet, my face would start to swell. I could barely open my eyes. I would experience the symptoms frequently, but the outbreaks wouldn’t last long. Because of this, any time I was at the doctor’s office I wouldn’t be able to show them what was going on.
On paper, it still sounded like anxiety and that’s all that I was diagnosed with. I was even put on several cardiac monitors, neurology tests, and still nothing showed up. I’m so thankful that, during this time as I graduated high school, my friends were super supportive with it.
I knew something had to be done when I kept throwing up. I decided that I needed to be seen by a family doctor, not just a pediatrician. It was right before Thanksgiving and I found myself completely fed up, the medication that I was taking at the time was making me even sicker. When I went to the new doctor’s office there was a medical student in there completing his residency as a general practitioner. When I explained all of my symptoms to the medical student, he insisted that I get my blood drawn. When we did this, I was so weak that I passed out just from seeing my own blood coming out of my arm. As I laid there on the floor in the doctor’s office, the student was pretty alarmed and he immediately insisted that we take some more samples. The next day, on a Friday, I dropped them off with him at the doctor’s office. He called me back that very afternoon and told me that I had to come back first thing on Monday morning.
When I came in that Monday, the med student told me that he had just learned about “carcinoid” at school. He didn’t say it was cancer, but he did tell me not to research it because I would scare myself (I had never heard of it before, so he had to spell it out for me!). But, of course, I went home and researched it. I was freaking out. In the meantime, the doctors ordered more scans to get a better idea of what was going on. I had a PET scan, and while I was on the table getting it done, the technician kept diagnosing me and telling me that there was something there. I wasn’t freaking out at this point, to be honest. I can’t tell you why, because I definitely should have been.
After the scan, they scheduled an appointment for me to be seen by an oncologist. I didn’t understand why, because I was convinced that I didn’t have cancer. When I went in to see this new specialist, the first thing he did was ask me what I knew about carcinoid. I described what I knew, that it’s a neuroendocrine disease, and then he explained a little more about it to me.
For a brief background: Serotonin is what makes you happy. I had an influx of this in my body, even though it didn’t control my mood or anything to do with that. Normal levels are 2-14 units, but I had 2000 units in my body. This meant that my tumors were secreting the extra serotonin, so any time I would be in a slightly embarrassing situation or in a slightly nerve wrecking situation, my body would go into fight or flight mode and release all of it. My body didn’t know what to do with it, so it would process it as fast as possible, which is why I would turn red. My body was constantly in “freak out mode” and I was completely exhausted from it.
on finally hearing the correct diagnosis
After I heard my diagnosis, there were no tears shed. I was relieved. I finally had an answer. Finally… someone put a name to my problem. I remember which chair I was sitting on in the office, and I remember what I was wearing. I remember the details, but not what I was thinking. I actually felt relieved, and I really think that God was there beside me. Every hardship that I had endured with it led up to that moment, and here it was… it finally came to fruition.
It was almost therapeutic just to hear the name and that it applied to me. My perspective changed: now that we had a name for it, we could find a solution for it and make a plan of action instead of simply placing a Band-Aid over the symptoms. There was only one morning where it finally hit me and I had a break down, but that was really it. I’m not an emotional person, I’m pretty numb to things, and this was no different. Even though it was scary, I’m so glad that it happened.
When I was diagnosed, so many people flocked to me in support. The night before my surgery, there was even a fundraiser for me at a restaurant, Travinia, in Aiken where 10% of the proceeds from that night were donated to me. I worked there at the time, but I had never seen it as full as it was that night. It was heartwrenching knowing that they were all there for me, even though some of those people didn’t even know who I was the day before. It gave me hope for humanity.
undergoing the surgery
I went to Vanderbilt, Tennessee in 2014 to undergo surgery. By the time it was done, the surgeons removed my gallbladder, 70% of my liver, and 13 inches of my intestines. It turns out that the tumors started in my intestines and then moved to my liver, and they took out the gallbladder as a precautionary measure. They were able to move 90% of the tumors from this surgery, so I’m thankful that it was very efficient.
on her treatment
Once a month I receive a shot that is essentially low-dose chemotherapy, and I’m going to be on this form of chemo for the rest of my life every single month. It doesn’t make me sick, but it fills in what the cancer has taken out. It blocks the serotonin from being secreted so that I don’t have attacks as often. Now that 90% of the tumors have been removed, I have maybe one attack a week instead of 6-10 a day. I fly to Denver, Colorado every six months for a checkup where I undergo precautionary scans and blood work and to see a world renowned specialist, Dr. Liu. He’s incredible, and since I’m one of the youngest ever with this disease (I was diagnosed when I was 19), he’s interested in following me and this disease throughout my life. He’s even coming to my wedding!
what you should know about carcinoid cancer
The “color” that represents this cancer is zebra stripes. The reason for this is because, if you close your eyes and hear hoof beats, you automatically think that you’re hearing a horse. But it could also be a zebra. So think of it this way: when you’re looking at the list of symptoms that I had, it’s easy to think it’s anxiety or IBS or Crohn’s, but carcinoid is a little harder to diagnose. You really need to find people that are aware of it to be able to diagnose it. Sometimes you have to think “zebras.”
I want people to know the name of it, because unfortunately a lot of doctors and nurses who treated me at Vanderbilt hadn’t even heard of it themselves. People need to know what it is because the symptoms are so common: the flushing and the anxiety are so conventional that they can be overlooked. If people know the name of it and are aware of it, they might be able to help somebody else get diagnosed and get the help that they need.
It frustrates me that people assume that cancer patients just lay in their bed all day, because that’s just not the case. Unfortunately, it is for a lot of people with different forms of cancer, but not this one. It’s livable. I’m able to get married, to hopefully have children, and to go through my day-to-day life. When I see people that only know me for having cancer, they respond to me with pity to be nosy or to generalize me.
But I want people to know that I’m more than a cancer patient.
on looking back at the misdiagnosis
It made me feel weak when I was told that it’s anxiety. I feel like so many people these days have a platform to discuss their anxiety, and I understand how they feel, but being told that I just needed to take a drug and to live with it was really frustrating. Looking back now, and seeing the steps that I had to go through to get here, it really makes me want to tell people to keep pushing. You know your body; you know what feels normal and what doesn’t. If you’re not getting the treatment that you need and if your problems aren’t being solved, keep pushing to get a second opinion.
how life looks now
I really don’t take it for granted. In the past, I would care what people think, but I’ve really started to work on that. You have to realize that life is short. Dr. Liu told me “we’re not really worried about the quantity of your life, we’re worried about the quality of your life,” and that really spoke to me. When he said that, I realized that I might not be here as long as someone else who’s my age, but I need to make the most of it while I am here.
Now, I love taking pictures. If I see something on the side of the road that I want to take a picture of, I’ll pull over and get out of my car just to go take that picture. And I’ll wake up an extra 20 minutes early to go sit on the porch and drink a cup of coffee in the morning instead of hitting the snooze button one more time. I savor the little moments. It’s not the low points in life or the high points, it’s the little ones in between that really make up the quality of life. You’re not always going to be able to go on vacation. You’re not going to be able to do a lot of things. But it doesn’t take a lot to sit outside for 20 minutes and drink a cup of coffee.
how she describes herself
I am motivated.
And Clayton has really helped me with that. He is one of those people that makes it happen; if something needs to be done, he gets it done. You may not want to do it, but if it’s going to make your life better, you need to get it done.
her favorite mantra
“Worry does not solve the problems of tomorrow, but it takes the strength from today.” Worrying doesn’t solve your problems, it’s going to take you away from the moment that you are currently in.
her advice to others
She’s more than a cancer patient, she’s a hero. You can tell her the same in the comments section below!
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