Familial Adenomatous Polyposis

by Tiffany Probus 2 years ago in health

I Refuse to Give Up

Familial Adenomatous Polyposis

When you have a parent with Familial Adenomatous Polyposis (aka F.A.P.) you have a 50/50 chance of also getting this APC gene mutation. Hepatoblastoma is a related childhood liver cancer that also has a risk of being passed on to your children. If you're EXTREMELY lucky (or blessed, depending on your beliefs) none of your children will have the mutation, but unfortunately for my fraternal twin Heather and I, we "received" these mutations. Heather was diagnosed with Hepatoblastoma when it was too late. Even though she had weight-loss and in pictures I could see her chest bones and the nurse told our mom her distended stomach was because she was constipated when really....she had cancer. At 2 1/2 years old (1994) my twin died of cancer. Because no one thought anything of it....She had no chance. I lost my best friend forever.

I remember my mom would always say I told her, " I wanna die too, but don't worry, I'll be back." I also remember telling her, "don't cry mommy." I'm sure I had no idea what truly happened to my sister....Where she actually went. But ever since that day, life surely hasn't been the same. My dad no longer wanted to go on day trips. We only went to the lake a few times here and there, but other than that, we usually only went to the store. My mom and I always felt like we had to walk on eggshells around him. One minute he was nice/joking around and the next he was yelling/ blaming something on me even if it didn't make any sense.

My dad was diagnosed with stage 3 rectal cancer in 2008. I'm sure he'd had it since 2006 at least because when we went to Kentucky where most of the family is from, my dad had to stay near the restroom way too often and had to sit down quite frequently. My dad had a tumor the size of a baseball in his tailbone and it had damaged his nerves. I will NEVER understand why our (male) doctor (and yes, I see it way too often men are the ones who seem to shrug everything off like its no big deal) acted like it was just bad arthritis all the time. He always prescribed him pain meds and later on he had kidney issues because of this. Whoever it was, wrote in his records as if he was abusing pain meds when he wasn't. Military doctors seem to be the worst!!!

My dad passed away in 2009. He made it through my high school graduation and passed 4 days after I turned 18. In May of 2010 I was also diagnosed with F.A.P. and had precancerous polyps with the largest in at 2cm which had caused my on-and-off bleeding since 2008. I had lost 20lbs because almost every food made me feel sick and I missed 2 days of each week for sicks months straight.

I had my colon removed in July of 2010. I had NO life for 4 months. I was in and out of the hospital because of low sodium and dehydration. I remember one day was so bad because my blood pressure was DANGEROUSLY low and that was another hospital visit. I was in and out of the hospital every week from July to November. I had an ileostomy bag which was the reason I was in the hospital all the time. I lost almost 60lbs within those months and MOST of it was muscle. My first surgery was 7 hours long and I had to learn how to walk again. I was even stuck in the hospital on my 19th birthday. The people on the floor I was on gave me balloons and I got 2 pieces of chocolate cake. One for lunch and one for dinner and I tried eating some, but that was such a weird time because I couldn't stand chocolate at the time and I LOOOOOVE chocolate. One of the surgeons finally prescribed salt and potassium tablets and I was finally able to have a rebuilt rectum. No more bag!! I felt I was finally able to live again.

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