My name is Melanie Oberkrom and I’m a Leiomyosarcoma survivor.
Being an athlete, I’ve always lived a healthy lifestyle. I was rarely sick and quite honestly, the last time I was ever in a hospital was when I was born. However, in December 2006, just one month after turning 21 years old, and in my third year of college at Mizzou in Columbia, Missouri, I began feeling weak. Soon a sore throat started accompanying my fatigue. I put off going to the doctor because, to be honest, I hated visiting the doctor. Being a healthy individual, it just wasn’t something I did often. Eventually, it got to the point where simple tasks such as making my bed or moving my clothes from my washing machine to my dryer had me feeling like I might pass out. Everyone had been telling me it sounded like I had mono, which produces extreme fatigue for a long period of time, not to mention mono was running rampant around campus. I hopped in the car and drove myself to our Student Health Center. I explained to the doctor what had been happening, and she agreed that it sounded like mono. She drew blood, sent me home, and said a nurse would call me with the results. Just twenty minutes later, as I was opening the door to my house, I received a call from my doctor. She told me that my blood counts were dangerously low and she wasn’t even sure how I was functioning throughout my day. My hemoglobin (the part of your blood that carries the oxygen) was at 5 and the average is 13. She informed me that I needed to head to the University Hospital, immediately, and that they were admitting me. I hung up, in tears and terrified, as I told my roommate that I needed her to take me to the hospital. I then called my mother who hopped in the car and drove two hours from St. Louis to Columbia to be with me.
In the hospital, I received one unit of blood during a blood transfusion. Immediately following the transfusion, my blood levels were close to average again. However, after a few hours, my levels were tested again, and it appeared they were dropping. My body was losing blood and we had no idea how. My stool and urine samples came back negative for blood. I was not vomiting up any blood. After another blood transfusion, my levels seemed to be holding steady and after 24 hours, I was released with orders to return in a few days for an upper endoscopy to find the cause of the blood loss, which we were assuming was a tear in the esophagus or a bleeding ulcer.
Three days later, I returned for my upper endoscopy and we I had a golf ball sized “bleeding mass”; it was located in my stomach, attached at the top near my esophagus and it was ulcerated and bleeding. I was told I needed this removed and we scheduled a date with the surgeon. Thankfully a nurse there urged my mother to take me home to St. Louis to get treated at Barnes-Jewish Hospital/Washington University. She told us the doctor had never seen anything like this and we had a top ranked hospital back home; it’s where I needed to be. And she was right.
I moved home and visited various doctors. The first doctor was not able to biopsy the mass for fear of losing too much blood. The second biopsied the mass, told us it was benign, but that the removal was far beyond his level of expertise. We eventually found a surgeon at Washington University who was confident he could remove my tumor, but in doing so, he would also have to remove my entire stomach, and replace it with a piece of my colon.
On February 14, 2006, just three weeks later, I went in for surgery not knowing what to expect. The surgeon was able to remove the now orange-sized tumor and only removed one third of my stomach and the very bottom portion of my esophagus. Unfortunately, we learned the original biopsy was wrong, and my tumor was in fact malignant. I was in the hospital for 14 days, unable to use my abdomen, and in excruciating pain. It was within this timeframe that we learned the severity of my situation. After countless tests with shocked doctors, my tumor was sent to Dana Farber Cancer Institute for further testing . They too were shocked but confirmed that I had Leiomyosarcoma; a very rare and aggressive soft muscle cancer. I would have to undergo intense treatment, the strongest out there at the time.
I spent the next ten weeks recovering, and it was the worst ten weeks of my life. I had a feeding tube that we ran for 10 hours each night because I wasn’t able to eat much by mouth with my now-tiny stomach. Even a half-dollar sized pancake would fill me up and cause pain. The pain in my abdomen was indescribable; there were times I honestly wanted to give up. I begged my mother to just let me die. I thought death would have been better than the pain I was in. Of course, she didn’t let that happen. Instead, she carried me on those weak days. Through her love and support, I was able to make it through recovery to begin my radiation treatments.
I underwent six weeks straight, five days a week, for a total of 30 radiation treatments. Toward the end, I was unable to eat, because it was literally frying my esophagus. I went from 120 lbs to 101 pounds, which is severely unhealthy for a female standing 5’8”. However, I pushed through because it was nothing in comparison to surgery and recovery. I also pushed through because I had a new outlook on my situation.
It was during radiation that I learned that my cancer is a one-shot deal. It cannot be treated again so we absolutely had to get it all with treatment. At first, hearing the doctor say “If it comes back, it will take your life”, affected me. It got me down and it’s all I could think about. I could not stop focusing on the fact that my body, the body I’ve treated so well and kept so healthy, had now turned on me. I was fighting… against myself. And I had absolutely no control over it. Helplessness was the worst feeling I experienced. To know I was at the mercy of my own body, modern medicine, my doctors, and God, and absolutely nothing I could do to aid in it. But one day, I woke up and realized I couldn’t live my life in that mindset. As far as I could see, I had two choices: lay down and give up or stand up and fight. I chose the latter. On that day, I vowed to view everything with positivity, would try to live my life as normally as possible, and would win this fight. In my mind, there was no other option.
After six weeks of recovery from radiation (in which I also developed shingles), I began my chemotherapy regiment. I had my portacath put in and I was ready to begin chemotherapy. (A portacath is an internal IV in my chest which the doctors could not only give me chemo and others medicine through, but they could also draw blood out of it. With the amount of medicines and blood draws I would endure, a portacath made life much easier than being stuck in the arm all the time). I would receive chemo for one week, Monday through Friday, for about seven hours a day and then I would be given two weeks off until my next week of chemo. In all, I had five weeks of chemo, totaling 25 treatments. Chemo is another time in my life that is hard to describe. It was rough and although it only lasted from July until October, it felt as though it lasted two years. In that time, I lost my hair, I was incredibly weak, and towards the end, had to use a wheelchair during chemo weeks. After every week of chemo, my blood counts were too low, which resulted in having to get a blood transfusion. I pretty much slept my chemo weeks away, being awake maybe four hours a day. I’d wake up, get ready, sleep in the car, sleep while my mother wheeled me up the 7th floor of the Siteman Cancer Center, sleep while I waited for my name to be called, and sleep all seven hours of chemo. I’d only wake to occasionally eat and to use the restroom. After chemo, I’d sleep on the way home, sleep until dinner, eat, shower, and go back to bed. Right before bed, with my portacath left accessed from that day’s chemo, my mother would hook me up to another medicine that I had to run for eight hours every night. One of my chemo drugs can cause kidney failure and this medicine helped to prevent that. (Which also meant every day of chemo I had to give them a urine sample to make sure my kidneys were still functioning well.)
Although chemo was my personal hell, I remained positive. In my weeks off of chemo, I would drive two hours to Mizzou, where I enrolled in 12 credit hours, continued to work part-time at the preschool, and hang out with friends. I refused to let cancer consume my life. Sure, I had bad days. But in those bad days, I turned to my friends and family. They carried me when I was too weak to carry myself. They were my positivity when I lacked it. With their love and support, I was able to overcome a disease I feared would take my life.
On November 20, 2006, just one month after my last chemotherapy treatment, I received my first clear scan and was officially in remission. For the next three years, I received a scan and upper endoscopy every three months. When I reached my three year mark of remission, I only received them every six months. Once I reached five years of being cancer free, I was able to move to only receiving scans and endoscopies once a year.
While I might be in remission, life after cancer has been anything but easy. I still suffer from chemo brain, I developed a small heart issue from my chemo drugs, eating and drinking are now a very difficult task, and I have acid reflux. Unfortunately, as a result of my surgery, I am missing my esophageal sphincter (the cardiac sphincter) and thus have constant acid reflux. Not only does this leave me in pain, discomfort, and cause vomiting at times, but it also puts me at risk for esophageal cancer for the rest of my life. At least once a year, I receive an upper endoscopy to check for malignant cells. During this endoscopy, the surgeon also uses a balloon to stretch out my esophagus. As a result of surgery, I have issues with eating and drinking. My esophagus strictures from time to time and the nerves now malfunction. Eating is a difficult because, multiple times a day, food and even liquids become stuck in my esophagus and more often than not, I have to use the restroom to manually dislodge it. Sometimes it gets stuck due to stricturing and other times, my esophagus will close prematurely and not open back up for quite some time. It’s frustrating, painful, and at times, embarrassing. But I just accept it and deal with it as part of my daily life now.
I could focus on the negatives of my life but it does no good. Instead, I embraced the hardships and I chose to take my negative experience and find the positives. I’m a firm believer that there is good, even in the darkest of situations, and I believe this positivity helped to save my life. The positives I can take from my situation are that I have a deeper faith in God. The love between my family, friends, and I has never been deeper. I have been shown just how strong I truly am. I’ve realized the true beauty in life and never take a moment for granted. I met my beloved husband through my experience. I was shown that my purpose in life is to help others as I now have a career working to fight cancer. And lastly, my experience has allowed me to help so many others. I share my story to inspire others, to give others hope, and most importantly, to relate to others. I felt lost and alone through my experience and I want to make sure no one else ever feels as I did. I have a personal, public blog I write in often, I speak at events, and I join forums, discussions, and support groups on various websites. My goal in life is to help others cope and give them hope.
For those battling cancer, bad days are inevitable. Embrace them and utilize your loved ones. They are there to fight for you when you no longer can, to be your strength when you’re weak and your smile when you’ve forgotten how. Reach out to others online, like myself, which truly understand your fears, emotions, thoughts, and physical discomforts and pain. Make those bad days few and far between. Love is stronger than any disease. Keep your head up, keep smiling, never lose hope, and know you have the fight in you. I know in the moment, it seems to be Merry-Go-Round that just keeps spinning, but I promise, there is an end. Take everything one day at a time and celebrate any small victory, even if it’s simply waking up that day. You are stronger than you think.
To those with a loved one battling cancer, your role is more important than you will ever know. I am here today, sharing my story with others, because of people like you. Whether it’s a hand to hold, a shoulder to cry on, a smile given, or their strength on bad days, they cannot do this without you. Your love will carry them through.
There is so much beauty in this world, and once the battle is won, you’ll be able to find the positives in your experience and use them to grow into a better, stronger, and more beautiful individual.