Diagnosed in May 2017 at 20 years old
My name is Allyse, and when I was 20 years old when I was diagnosed. I have lived in St. Joseph, Michigan all my life; I have a single mom and an older brother; I graduated from high school in 2014, and will be graduating Valparaiso University with my bachelor’s degree in Psychology in December 2018.
I made it almost all the way through my junior year of college before I knew I had this terrible disease. It was Mother’s Day weekend, May 2017. I was back from college for the weekend to celebrate my brother’s graduation and Mother’s Day. The pain began right after my brother’s college graduation ceremony on Saturday. It started as what felt like a cramp, and then it grew in size and intensity. By dinner time, the pain felt like a knife stabbing in my right-gut. My mom asked me if I wanted to go to the E.R., but I assured her that I was fine and could deal with it. After all, the next day was Mother’s Day, and I had the whole day planned out for her. I laid in bed around 9pm that night, and couldn’t lean forward to pull the sheets over me. My mom tucked me in and asked again if I wanted to go to the hospital. I told her I would consider going after lunch the next day, since most of my plans for the day were in the morning. And that’s just what I did. I made it through Mother’s Day breakfast, gave my mom her presents, got us a group picture, then explained to her that the pain was still stabbing and intensifying by the minute, so we left right for the hospital.
After a number of hours at the Emergency Room, the doctors told me I had a 13.5 cm mass in my liver. They were–and still are–stumped as to how I never had a single bit of pain until it reached this giant size. The doctors said that they weren’t able to remove the tumor, which they thought to be an adenoma, because they’ve never operated on a liver tumor over 5 cm. About a week later, the University of Chicago hospital called and said they had a space for me on their surgical wing.
After a very painful ride in an ambulance to Chicago, I got situated in a room, and my surgery was scheduled for May 22, 2017 with Dr. Bodzin. After surgery, he let us know that along with the 13.5cm tumor, he also removed 10 really small tumors from the same spot in my liver. This meant removing the right lobe of my liver, as well as my gallbladder. My scar ended up being a 5 inch midline with a 1 cm scar where my drainage tube was for the week of hospital recovery. A day later, the pathology report came back on my tumor that the mass was not an adenoma–it was Fibrolamellar Hepatocellular Carcinoma. That month, we did a lot of research and ended up pressing my oncologist to get me scans every 3 months indefinitely to check for new growths.
From the very beginning of diagnosis, I decided I would do everything I could to keep cancer out of my body. After my recovery from surgery, I traveled to Eden Valley Institute in Colorado, where they specialize in treating diagnoses holistically. I learned how to eat plant-based vegan and stay away from the sugars that cancer feeds on. I also learned how hydrotherapy heat baths and how using an infrared dome over affected areas can aid the immune system and assist in making it so cancer cells doesn’t have a chance to multiply and grow.
I went back to my college at Valparaiso University for my senior year, and to finish up my incomplete classes from junior year. Though I was assured by my oncologist that I could go to school, and behave as if I never had cancer before, my experience at Eden Valley and my research into holistic treatment taught and convinced me that I couldn’t go back to college drinking and eating fatty and sugary foods. I read that refined sugar energizes cancer cells, so drinking alcohol was not going to be in my near future. I need to take my health and immune system very seriously if I wanted to keep from having recurrences. I stopped drinking, didn’t eat fast food or processed foods, and went vegan. I also kept myself away from dangerous, germy, and smokey places near campus–I really wanted to do everything I could. And though it sounds like I made it so I couldn’t live a “normal fun” college life, that’s completely not true. I had friends over, I went on dates, and I allowed myself cheat-meal days where I could get my friends together to make homemade pizza, or eat a seafood dish to celebrate clean scans. But for the most part, I did everything I learned would help.
I went a full year before my oncologist found a recurrence inside of me. At a regular scan in June 2018, my MRI showed a golf-ball sized growth in a lymph node near my right kidney and pancreas. My oncologist added that in hindsight he could see a nickel-sized mass in my March scans. So my body probably only went 7 months before growing a tumor. We scheduled the surgery for June 27th and spent a lot of time on the phone with my surgeon that these factors put me at high risk for complications.
My surgery went better than expected. There were no complications, and the lymph node had a clean removal. I was in the hospital for a couple days, recovering with my mom by my side day and night, and my dad visiting every day. The day I was leaving the hospital, my oncologist and primary surgeon let me know that they are both leaving the University of Chicago hospital to pursue their careers at different hospitals.
I transferred to Rush hospital in Chicago and so far, I really enjoy it. Dr. Paul Kent is my oncologist, and he is really personable and knowledgeable.
I got a port put in at the end of July, which has been a real pain. I am currently following a chemotherapy protocol where I have 5FU on a fanny pack constant drop every other week, 3-4 shots of .7ml Interferon, and once a month drip of Optivo. Right now, I have no tumors inside of me. This treatment is to kill any microscopic cancer cells before they have a chance to grow into tumors.
I’m going back to college in the fall to finish up my last semester of my undergraduate B. A. at Valparaiso University. Last year I got very involved with research in my department, as well as within my internship at the campus sexual assault office. This next semester I am thrilled to continue my research with the department, as well as research with a highly esteemed retired professor. My dream is to continue schooling and get my doctorate degree in Clinical Psychology with a focus in Neuropsychology.
I know that the best years of my life are still ahead of me. I also know that the medical situation I have is going to cause obstacles down the line in the form of tumors, major surgeries, and chemotherapy. One of my main goals in life is to have a family of my own, and that is the thing that is keeping me going strong. That, and my amazing, incredible, awesome mom!