I remember the first conversation I ever had with my mom about CDH1. She called me, and told me not to freak out, but there was a chance that she might have a really rare gene that increases her chances for stomach and breast cancer. She assured me that nothing was certain, and she wasn’t even sure she had it, but she was getting tests done to try and figure out why cancer was so evident in my family and affecting people in my family at such a young age. My grandmother found out she had breast cancer at 29, that was the first red flag for the genomics team. When they heard that they instantly wanted to test my mom for the BRCA gene, which is a genetic mutation where you have a really high chance of getting breast cancer, my mom tested negative. When our genetic counselor found out that stomach cancer was also evident in members of my family, she told my mom “it’s a long shot, but I want to test you for another mutation. It is extremely rare and I really doubt you will have it”, she was talking about CHD1. My mom tested positive for it and was told that all of her children had a 50 percent chance of having it to.
When my mom told me I really didn’t take the news as seriously as I should have. I remember meeting our genetic counselor and literally laughing at her because she kept emphasizing how much having this gene could change not only mine, but my siblings’ lives. I look back and realize how immature and naïve I was. I was a child disrespecting someone who simply wanted to help me, who wanted to give me answers. Looking back now I want to thank Rebecca, our genetic counselor, for basically forcing me to get tested. I didn’t know it at the time but she saved both mine, and my mothers, lives.
My mom had her stomach removed before I was aware I had the gene, I hadn’t been tested yet. I remember so many members of our family doubted her decision to get her stomach removed as we ate dinner the night before her surgery. Looking back, I don’t even know how she was able to eat that night, I didn’t even sleep the night before mine. When we arrived at Johns Hopkins she was taken back for pre-op, and I fell asleep in the waiting room. I almost didn’t even see my mother before she was taken back for surgery. As I write this I am crying uncontrollably, because I was not there for her. She was so scared to get this surgery, and I was asleep in the waiting room. I am sickened at the person I was then. I am so sorry mom, I am so sorry for how I acted that morning, I wish more than anything that I could go back to that day and do everything different. I actually slept most of the time that my mom was in the operating room, I quite literally was acting like I didn’t care about any of it. I hate the person I was.
My mom came out of surgery and she was in so much pain she begged the doctors to kill her. I guess seeing that finally woke me up because at that moment I started crying, it was very hard to see her in so much pain. She was in the hospital for 10 days, and unlike me who had a laparoscopic surgery (they didn’t cut me open in one large cut they made multiple small incisions), she was cut open completely. She said she didn’t remember being in the hospital they had her on so much pain medication. We would visit and she would be asleep, every day.
It took my mom two years to return to work. She wasn’t even able to keep water down; she was throwing everything up. She had a home nurse that came by during the day and she had a PICC line in her arm to give her nutrients. I wasn’t there for any of it, at the time I was in college so once summer vacation was over, I returned to school. She had to deal with so much on her own. I didn’t call enough; I was too busy partying. I can’t emphasize enough how much I hate the person I once was. My mom was by my side throughout my entire surgery and the first few months of my initial recovery, she still calls me daily to check on me. I wish I was there for her the way she is for me. I know I was younger, and I know I was in school. But one thing I have learned is that your family is forever, and they should always be your number one priority.
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