IT HAPPENED TO ME: I Survived the Most Lethal Cancer There Is At 21

Why raising awareness of pancreatic cancer is personal for me.

Jul 25, 2014 at 11:00am | Leave a comment

I was a typical 18-year-old college freshman, going to class, working and hanging out with my friends. But in November of 2011 my life as I knew it changed. That’s when I discovered I had pancreatic cancer -- completely by chance.
 
My recovery after some routine dental surgery went horribly wrong. The antibiotics I was taking made me really sick and I went into septic shock. I was in the ICU for four days and while there, I had an emergency CT scan that revealed a mass on my pancreas. 
 
It was so shocking. Pancreatic cancer is the most lethal cancer there is. Only 6 percent of those diagnosed with it survive more than five years. Most die within a year. Also, almost all people who get pancreatic cancer are 45 or older. That’s why most people don’t think someone my age can get it. I certainly never did. My great uncle and a good friend’s father both passed away from the disease, but until it happens to you, it doesn’t seem real. 
 
It was so difficult to be 18 and get news like that, to one day be in college and the next day find out you have a deadly disease. I just wanted to go back to school and to lead a normal life. I have the most supportive family on the planet, but it was and has been hard on all of us to deal with this new reality. Pancreatic cancer has changed my life in every way.  
 
After the diagnosis, I told my roommates and friends at school. A girl asked me, “Are you going to die?” and I responded, “I hope not.” No one could understand it. At first, I lost a lot of my friends; no one knew how to react and they treated me differently.  
 
I had the Whipple surgery in March 2012. It is a long and complicated procedure involving the pancreas and surrounding organs. As part of the five-hour operation, half of my stomach and part of my pancreas were removed, and I have no bile duct, spleen or gallbladder. The recovery period was really tough. At only 18 years old, I had to accept living the rest of my life without these parts of my vital organs. Every day was a battle with my body and my mind. All I wanted to do was lay in bed but the doctors needed me to almost immediately begin walking a mile daily as part of my recovery. 
 
It was emotionally and physically exhausting, and at times I felt so tired that I just wanted to give up. I was only a teenager and fighting for my life. It wasn’t fair! My parents pushed back. My mom would come to me and ask, “Are you sad?” and when I would say “yes,” she’d say “OK, you have 15 minutes to be sad and then we’re going for a walk.” My medical team also tried to prepare me, telling me I would need to adjust my lifestyle and that I wouldn’t be the same. And they were right. 
 
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I am now a 21-year-old pancreatic cancer survivor but I do not have the body of someone my age. Since I no longer have a regular-size stomach or pancreas, I have to think twice about everything I do and ask myself, will that make me sick? I have to be very careful to eat little to no fat, which is difficult to do and still have a balanced diet. It’s hard to be spontaneous; you can’t plan every meal. It's an added layer of stress for me.
 
In addition, my immune system is low so I need to be in tune with my body, including thinking hard about how and when I do things.  If I want to visit a friend in the hospital, can I do it? I wash my hands all the time and when I am out I have to be very careful about the things I touch. My friends are the same age as me. They can go out and party, and do whatever they want, but I have to limit myself a lot.
 
I definitely went through a “why me?” period and even now I keep thinking what will I do if this happens again and the cancer comes back? I live with that thought every day.
 
It’s also been hard as all my friends graduated college this year, and I would have graduated with them had I not gotten sick. And that hurts.  I have had a lot of anger about this disease. It can feel so unjust. But right now I feel so lucky and grateful to be here. 
 
The turning point for me was when my sister surprised me with a trip on a cruise. The location was so beautiful and relaxing, I was able to take a step back and realize that I only have one life and I am going to live it. Things happen for a reason and I always try to find the silver lining. I value each of my days because I’m alive. Being positive is very important to me and I’ve had to learn the hard way not to let anyone or anything that is negative enter my life and bring me down. 
 
When I was able to feel strong again, one of the things I focused on was reigniting my love of charity work and community service. But this time I wanted to find a way to focus my efforts on helping find a cure for pancreatic cancer. Through an online search I found out about The Lustgarten Foundation, a nonprofit organization that funds pancreatic cancer research, and I have never looked back.   
 
Part of my recovery means suffering from an occasional bout of pancreatitis, but I didn’t let it stop me from attending my first Foundation walk on Long Island last year. In April, Team “Alicia’s Angels,” made up of my family and friends, participated in the Foundation's New York City walk to celebrate my survival of this disease and to honor those who have died from it. It was important for me to know that 100% of every dollar I help raise goes directly to pancreatic cancer research because of Cablevision’s support of the Foundation.  It was a wonderful, amazing day -– not only for me, but for the family and friends who have supported me.
 
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Left to right: Kerri Kaplan, Executive Director of The Lustgarten Foundation; Michael Ealy, actor; Alicia; Ken Rosato, WABC.

 
Although I am generally a private person, I want to share my story because pancreatic cancer is a disease that needs much more awareness. I am so grateful and happy to be here, and it is very important for people to understand that even though statistically it is rare to get this disease so young, it does happen. 
 
As a young woman it took me a long time to feel proud of the scar from my surgery that stretches the length of my torso. But that scar represents why I am alive today. I no longer live in fear of this disease, nor let it control my life. I know I will do normal 21-year-old things like graduate college with my nursing degree.  I can’t wait to be able to help others and give back, based on my experience.  Of course, because of this disease everyone tells me that I have to take one step at a time, but that's not my nature. I am learning to pace myself in terms of how far and how fast I am going.
 
I have so much to look forward to this year. I return to school in the fall. I have a new job working in a medical clinic.  I realize now that my survival does bring hope to others with this disease. This really fuels me, and makes me certain that I will not let anything stop me in the fight to find a cure.