The ‘C’ Word

Cancer.

It’s the six letter word no one ever wants to hear. Especially a 15 year old girl.

It was by far one of the most terrifying days of my life, not everything that I had gone through in the 24 hours before, it was when those words came out of my doctor’s mouth, “You have cancer.” How does someone even react to that? Do you cry? Scream? To make the situation even better my doctor also said, “but we don’t exactly know what kind.”

Day Zero

The events leading up to my diagnosis were quite intense. It started off as any other day. It was June 1st or 2nd so it was summer vacation going into my sophomore year in high school. I went to the mall with my mom and I was supposed to start my period soon (I know, gross), so I wasn’t feeling well. I had what I thought were cramps that were slowly getting worse during the day. My grandma was at the mall to with her friends so I ended up leaving earlier and went home with her. When I got home the pain had gotten significantly worse. Laying on the floor between the dining room and family room with this sharp pain on my left side, just under my ribs down to my lower abdomen, I remember crying and starting to panic.

Later.

Eventually when my mom came home from shopping, she called the doctors for me and he told her to have me take some ibuprofen and some type of medicine for gas. (Your stomach in on the left side of you body just under the ribs so he thought I was just really gassy.) I took the medicine, an hour later I was still in the same amount of pain, if anything, with it getting worse. My grandma figured I just needed to eat some food to help with getting the gas out. I tried to eat some chicken noodle soup, I ended up almost passing out two spoonfuls in.

So, if you know anything about my family, we are stubborn people, we refuse to go to the hospital unless we are literally dying. I remember after enough crying (and some screaming) and going back and forth with my mom. She ended up taking me to the hospital. It only a 25-30 minute drive but I swear it was the longest car ride of my life. The pain in my stomach kept coming and going, getting intense and mellowing out. I think I passed out twice on that car ride.

At the Hospital

The first thing the doctors asked me was what my diet and exercise was like. Then they told me I probably have gas, or that I’m constipated. They had decided to do an X-ray just to be sure. We also did some blood work. I honestly don’t remember what other tests they had did on me that night. The very last things I remember from that day was saying I had to use the restroom and standing up then feeling my eyes roll into the back of my head and everything went black for a few seconds. I guess it was so painful that it didn’t even hurt anymore. When I came to I kept saying that I had to use the restroom but all the nurses were telling me I was not going anywhere. My doctor then came in and told me my blood count was dangerously low and they found that I had a tumor and it burst and I was bleeding pretty bad internally and he was surprised I did not completely blacked out and I was going into surgery. I blacked out again, I woke up in surgery prep right before I got anesthesia. The surgery they were going to do was a laparoscopy. (It is a procedure that involves a camera going into your abdomen.) The anesthesiologist  told me to count down from 100. By 97, I was out again.

Post Surgery

When the drugs wore off and I woke up, I had a tube down my nose, heart monitors, two IVs in, a catheter, the whole works. The first thing that I tried to do was pull the tube out. Because who likes having something shoved down their nose, right? The doctors updated me on how it went, I lost half my blood during the surgery and was now anemic, thought they did not do any blood transfusions and at the moment I could not understand why. The tumor was the size of a golf ball and they were not sure if there was any more tumors. There was a possibility that the cancer cells had spread throughout the area since the tumor had burst in my stomach. Recovery from this surgery went well and I have three scars from this emergency surgery.

The SECOND Surgery

About a week later I ended up having to get a second surgery to make sure the tumor was completely out. My surgeon had to get special permission to do the surgery at a different hospital so they could have the right tools to do the surgery right. They had to scrape the lining of my stomach and test each section they took out to make sure that they got as much of the cancer out as possible. Surgery went the same woke up with the whole works but this time I had morphine and can I be honest? It was pretty freaking hilarious. I was talking to “Barney” yes, the purple dinosaur on tv from my childhood. I thought he was the shadows in the room. Hallucinating it something I hope I don’t experience again.

Being at a different hospital it was a pretty different experience post surgery. I was at an adult hospital so the nurses tried to get me out of bed in what seemed like not even an hour out of surgery. It was pretty crazy because they didn’t know that I was only 15. The nurses ended up having to apologize to me and explaining why they did that, apparently they didn’t work with kids much and for older people they need to get them out of bed asap so they recover faster. After I was stable enough, they transferred me back to the other hospital, thank god.

In total I spent about three weeks in the hospital.

The Diagnosis and Treatments

They had to send my tumor off to National Institutes of Health (NIH) to get the diagnosis. I got diagnosed with a rare type of cancer called Pediatric Wild-type GIST. Pediatric because I was between the ages of 6-18, and it was in my stomach when I first got diagnosed. Wild-type because I have a rare genetic mutation in my DNA. The diagnosis helped me understand why they did not do the blood transfusions, they wanted to keep my blood pure since my cancer was so rare.

Treatment options with my type of cancer is very limited, regular treatments like chemotherapy and radiation do not have an effect on the type of cancer I have. As of right now the only treatments I know about for my cancer is surgeries, one type of pill medication that is known to sometimes work and sometimes not and clinical trials. I won’t give any numbers because I do not want to give the wrong information. But, I was considered “cured” with the surgeries but at high risk for the cancer to come back until the five year mark. My cancer is so rare that as far as I know I am the only person on the island that I live on with this specific type of cancer.

After all of that chaos my follows up had included MRIs every few months, blood tests and then eventually going up to the NIH a year later to learn more about my cancer.

So I am not exactly sure how to end this but I guess this is it. I will share more of my story, when I got re-diagnosed, and more experiences in the future, so thanks if you made it this far!