My name is Felicia Wagner. I am 27 years old, but was diagnosed with Gardner Syndrome/FAP when I was 17 years old. I was born and raised in Des Moines, IA. I knew I had it prior to my diagnosis, because my father, who was the carrier, saw the physical symptoms early on. My father had 10 children. Seven out of the 10 have Gardner Syndrome/FAP. I was in high school when I was diagnosed, via colonoscopy. My gastrointestinal (GI) doctor, during that time, discovered a few large polyps and was able to cut them out. During this time, I was active in the sport of track and field. Running took my mind off of the obvious. Running was my outlet during this time in my life. After I graduated High School in 2004, I relocated to Houston, TX to attend college.
After relocating and getting settled into the big city, my siblings and I sought medical care. Not being able to afford the medical, I had to receive care from a public hospital. I began seeing the gastrointestinal (GI) doctors at Ben Taub Hospital located in the medical center of Houston, TX. In 2006, I had another colonoscopy done. The doctor informed me that my large intestine was infested with thousands of polyps and that I had a few in my duodena. I was informed at the age of 19 that I would need to prepare for my first major surgery. I was a sophomore in college having to prepare for a major surgery. I felt overwhelmed with the thought of having to take a leave of absence from school. Realizing my health had to come before anything, I took a leave of absence from college to prepare for my surgery. In January 2007, I followed through with the surgery. It’s took me six months to recover from the surgery. The recovery process gave me time to adapt to “the new me”. My stool was no longer firm, trips to the restroom were more frequent, and certain foods had to be eliminated from my diet and more. I returned to college in the fall semester of 2008. I was able to balance my frequent GI appointments and my studies. In May 2009, my father passed away from pancreatic cancer. This was hard to cope with, because he was my go to person when I had questions concerning FAP/Gardner Syndrome.
Despite the turmoil taking place around me, I managed to remain an honor roll student. I graduated May 2010 with a Bachelors of Science in the Administration of Justice with a minor in Psychology. Upon graduation, I continued on with my studies by beginning the Masters of Science program in the Administration of Justice. I had polyps from my last scoping the GI doctors kept a close eye on. While working on my Master’s, I had no issues, flare-ups or complications with my FAP/Gardner Syndrome. I graduated with my Master’s degree in May 2012. Soon after graduation I had the remainder of my large intestine and rectum checked for polyps; also my small intestine was checked.
Doctors informed me everything looked fine and they were able to remove the polyps they found. They biopsied them and would discuss any potential issues found at my follow up appointment. A few months after being scoped I began feeling sharp pains in my lower left abdomen. During my follow up appointment with the GI, I informed them of this new discomfort. The GI scheduled another scoping to see what was going on in my abdominal area. Since I was being seen at a public hospital, the next available appointment would be 8 months later. I could not afford medical, so I there was nothing I could do about the long wait. As the months went by, the pain began lasting for longer periods. I had appointments in between time with my primary care physician and voiced my concerns about this abdominal pain to her. She noted it in my medical files, but there was nothing more she could do. I then began feeling a small lump where the sharp pains were. Worry was an understatement to the way I was feeling during this time. Again, I went to my primary care physician and voiced my concern and explained to her the arrival of a lump. She again, noted it in my medical file, but nothing was done. Finally, the day of my procedure came and I voiced my concerns to the GI doctors before the procedure took place.
Upon waking up from the scoping, the GI informed that a desmoid tumor had formed in my lower left abdominal wall. She referred me to the surgery clinic where they would set up a date for its removal. After consulting with the surgery clinic, they set me up for a CAT scan, ultra sound and MRI, to get a closer look at the tumor. This was a stressful time in my life, because some of my siblings were dealing with their own FAP/Gardner Syndrome issues at the same time. I was truly overwhelmed and concerned. I am thankful for having a strong support system during these times. My church family really helped lighten the load and gave me a sense of comfort in knowing we (siblings) were not alone in this battle.
I had my surgery at the end of June 2013. I was informed prior to the actual surgery that it would be an hour to an hour and a half long surgery. After the surgery, I would be in the hospital for 24-hour surveillance. Well, things took a turn for the worse. My surgery was about 7 hours long and I was in the hospital 9 days after. My surgeon explained the tumor was much larger than anticipated. The tumor stretched across my stomach from my left to right and a piece of the tumor was attached to my small intestine. A cosmetic surgery team had to be called in to help reconstruct my abdominal wall. Also, a small portion of my small intestine had to be removed. I knew when I woke up from the anesthesia something was terribly wrong. I woke up in excruciating pain and a tube down my nose. I was discouraged after being informed of all that took place, but grateful they were able to get the entire tumor out.
My first few days in the hospital were spent trying to form a bowel movement. My surgeon informed me I could not eat solid food until I formed a bowel movement. My digestive system did not work for 3 days. On the fourth day, I was able to have a bowel movement and eat some solid food. My stomach was huge and I had a long cut down the middle of my stomach. I was visited by family and friends throughout my time in the hospital. I could not do much for myself, due to where the cut was located. My family helped clean me up and get me dressed. Not being able to do the “small things” really got to me. After being released to come home, reality set in that I would be down for a while recovering. I went through so many emotions during my recovery. I lost so much weight to the point where I looked sickly. My stomach was huge and deformed looking, from the swelling and reconstruction. I felt lonely at times. I was on an emotional rollercoaster. I’m the type of person that likes to stay productive. Sitting around was not what I was used to, so my recovery put me in a deep depression.
I was in and out of the surgery clinic during my recovery, because I could not keep food down at all. Eventually, my body created a hole on top of the surgery cut for the draining of an infection I developed. I had to pack the hole with gauze saturated in antibiotics for 2 weeks until all the infection was out. The drainage of the infection took a lot of the deformation of my stomach away. Soon after the infection was gone, I began keeping my food down and regaining some of my weight back. I began feeling a lot better to the point where I could leave the house.
Today, I can say I feel great. I’m still recovering internally, but the worst part is finished. I don’t have any feeling on my belly button and its surrounding area, but that’s alright with me. The journey of having FAP/Gardner Syndrome has its many ups and downs. I believe more research needs to be done and more resources need to be offered to individuals battling this condition. I am grateful for the team of doctors who help keep me cancer free. FAP/Gardner Syndrome is a part of me, but it does not define me. I will keep fighting and progressing in life. I plan on beginning a PhD program fall 2014. I am determined to live a successful life no matter what life brings.