Sharing the fact that you have a genetic mutation with someone you're in a relationship with can be extremely scary. Beyond the threat of you having cancer is the potential that your children will have the mutation as well. There is a 50 percent chance that my children will have the mutation. When I thought about telling my boyfriend, which I did very early on in our relationship, I was fearful that he would not want to be with me. It is a lot to ask of someone -- to both stick with you through screening and potentially cancer and to risk that his/her own child/children may experience the same thing.
Being that I have known of my mutation for about a decade, I have had to deal with telling more than one boyfriend about my mutation. My boyfriend has been more than amazing both in his understanding and compassion, and said something to me that enabled me to take a step back and look at the bigger picture. Rather than see my mutation as the sole disposition to an illness his children may have, he brought up illnesses his family has dealt with -- in a matter-of-fact, we-all-have-our-baggage kind of way. His attitude in no way diminished the experience I am having, but instead reminded me that everyone has some sort of family history of illness, and whether it be a mutation or another malady, we all have a predisposition for something.
Now that I've shared the wonderful experience I had telling my boyfriend, and continue to have, as he is here for me every day, let me tell you about a less-than-pleasant experience. When I first learned of my mutation, I was 19 years old. It was frightening and unusual to have annual colonoscopies. I had not yet processed what a blessing it was to have the information I do about my body and instead was just freaked out. Being the open and sharing person that I am, I told my then-boyfriend and his family about my mutation and the screening I would begin doing from then until forever. His response was not kind, sympathetic, or useful. He and his family made me feel like I was overreacting. I was particularly surprised that his father, a doctor, made me feel this way -- I had expected that he would explain to his family the ways in which my mutation is real and the proactive screening I am doing the right protocol. I disregarded what they had to say, knowing that I was doing what was right for me and would keep me healthy, but it was definitely hard to shake off that kind of reaction.
As often happens in life, I was deeply saddened that they had to learn the hard way that colon cancer can attack at a young age. In the world of irony, my ex-boyfriend's sister-in-law passed away from colon cancer in her 30s. Her cancer was eerily similar to my mommy's. One day she was skiing happily with her family, the next she was diagnosed with colon cancer. She too died three months following her diagnosis.
For me, it was the kind of being right that makes you want to stab yourself. You never want to be right at the expense of someone else's tragedy. I did not at all feel the relief that one does when someone realizes you were on the right path. I only felt the sadness that one does when they know someone is hurt, and feel for the children that will grow up without their mother.
If anything, this story only reiterates the importance of screening, and of knowing about one's family history of illness. While I have no clue as to whether this wonderful mother and loving person had a family history of cancer, I do know that screening may have been able to give her many more years to her too short life.
I have another ex-boyfriend, who was extremely self-centered, who did not really react to knowing about my mutation. When I had my colonoscopy locally, in New York, he was away. When I started going to the Mayo Clinic with my mom, I think he was also away, and/or did not care to inquire as to how things were going. I should have known something in the relationship was wrong, not only because he was not there for me, but also because I did not want him to be.
I am currently happy with my screening plan. I like the bonding my mom and I do while we are in Minnesota at the Mayo Clinic. I speak to my boyfriend often while we are there -- keeping him in the loop as to what I am doing and what results I have gotten. I have now gone with my mom to the Mayo Clinic for six years, and each time we come home I feel closer to her. Even though it is my own view of myself, I see myself in my mommy's image, as she was when she was dying from cancer, when I sit in the waiting room in a hospital gown. Beyond that, prepping for a colonoscopy is not pretty -- and I like that I can keep that from my boyfriend. While I do not want the situation to change, I do know that eventually the role of caretaker, supporter, and cheerleader during my annual, or more frequent, screenings will be transferred to my boyfriend. As such is the case, I feel extremely lucky to have a boyfriend who is as incredible as mine is.
The message I really wish to share here is that it is important to be with someone who can support you. If someone cannot be supportive of your decision to screen and be proactive about cancer, than that person probably cannot be there for you in other ways. I have never been strong enough to have that mentality when telling the person I am in a relationship with to say I will end the relationship solely based on a bad reaction to sharing such information. I should have given my boyfriend more credit -- to realize what an amazing person he is -- and know that he would see my mutation and attitude towards it as one of many things we deal with in our life.
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