I have the mutation. What now?

The day I moved into my junior year apartment at University of Hartford was when I got the call from my genetic counselor that I had the gene mutation. My mom had left the campus minutes before my phone rang. I had been waiting for the call for weeks now and so we all knew it would happen any day. While Devanshi was talking, I was thinking to myself “What about the others?” and “It’s better me than them.” I wrote down as much information as I could with the nearest writing implement (a green crayola marker), asked her as many questions as I could come up with, and got off the phone.  I told my family, and in return, received the terrible news that my brother and sister had the mutation as well.

Luckily, one of my best friends, Allison, was planning to visit that same night. She has been with me every step of the way and it was a relief to know one of my people from home would be able to give me a hug in a few short hours. In the meantime, I unpacked my stuff with a few sporadic breaks for sobbing, self-pity, and melodrama. Then I contacted my closest guy friend at school who naturally, reacted in a different type of panic after receiving my cryptic text stating simply, “Paternity test results are in: It’s a girl!” After explaining on the phone that he was not fathering anyone’s child, but instead, I was making a joke pertaining to the inheritance of my father’s rare mutation, my poor friend was very sympathetic and rushed over to give me a hug.

As soon as Allison showed up, I was in party mode. The test was positive, but I’m getting it taken care of this summer. In the meantime, I should give this stomach a run for its money! That night, I drank more than a person should ever drink in one evening. The next morning, I made the wise decision to keep my alcohol intake the same as before I got my test results. After all, the point of this whole ordeal is to not die young.

In the following months, I tried to relax, but was experiencing anxiety-induced stomach pains and indigestion. (If I have learned one thing from this, it’s that I am more like my dad than I originally thought possible.) To help with the anxiety that I was experiencing, I began to self-medicate with marijuana. (For all of my family members reading this, it’s legal in 2 states already. Get over it.) Weed helped with a lot of the physical pain I was experiencing and silenced the constant negative thoughts running through my head. For all of you who have just found out about your gene mutation, I recommend grand daddy purp to help with your stress (Is this bad?). But really, I think that with our rare circumstances, we can deal with the emotional toll however we please.

I have loved eating for as long as I can remember, but something about knowing that in a few months, your stomach is being cut out of your body, makes eating even more of an important ritual. With this mindset, it was inevitable that I gained a substantial amount of weight upon finding out the bad news. After a few months of the “don’t-give-a-fuck” diet, I realized that fat is not a good look for me. Knowing you’re going to lose weight in surgery is not an excuse to make yourself obese. You have to be as healthy as possible going into the gastrectomy, so my advice to my genetically challenged readers is to eat A LOT of really well-prepared, delicious, healthy food. I have lost most of the excess “I-feel-sorry-for-myself” weight since winter break and I am feeling much better. And god damn, is exercise a great stress-reducer!

A few of my school-friends and I have dyed parts of our hair purple in an attempt to mimic the stomach cancer awareness periwinkle color. Then when people would ask us about our hair, we would educate them about the CDH1 mutation. The plan was more effective than I thought it would be; the entire girls’ rugby club knows what’s up with my DNA. (Thanks, Bec!)

Right now, it feels really great to be away at college dealing with this. While it was tough at first, I think that reaching out to my friends and being open about my problem has helped tremendously. The classes, studying, and homework can be stressful on its own, but if nothing else, serves as a distraction from having to think about my personal issues. Now, in the beginning of February, everything’s out on the table, I’m feeling healthy again, my siblings and I just got clear endoscopy results (YAY!), and I am far less stressed about the reality of the situation. My roommates and I joke daily about how next semester in school, I’ll be saving money on alcohol and food, and spending it on adult diapers. (You know, shit happens.)


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