My sister has it worse
March 3, 2013 § 16 Comments
I think I’ve alluded to the fact that I have a sister on this blog, but I don’t think I’ve revealed much more than that. She’s my only sibling, and I love her dearly. It’s time she was introduced.
My sister is almost 4 years younger than me. We were in high school together for one year, when I was a senior and she was a freshman. We didn’t get along very well when we were kids. Essentially, I was critical of her and bitchy to her. And, in turn, she was stubborn and kind of manipulative (because she’s so damned smart). This is, of course, my perception of our relationship as children. I’m sure hers is different. She told me a couple of years ago that she straight up hated me in high school. That still makes me feel terrible.
Anyway, things are different now. I’ve always loved her. Now I also appreciate her. We don’t have a perfect relationship. We are still very different people, and we butt heads regularly. We are into different things. To choose one of many examples, I veer toward the crunchy, granola variety of human and she smokes cigarettes and eats mostly processed foods. And I probably judge her for her Kraft mac and cheese more than I would like to admit. And, well, she’s never been quiet in her judging of my wierdie grains and obscure vegetable-based diet. The list of differences is long.
But, there is one thing we have in common.
We both have messed up lady bits.
When I was 19, my extended family learned that we are carriers of the BRCA1 genetic mutation. Several of my dad’s female cousins were diagnosed with breast cancer in their 30s, so when they and their father tested positive for the mutation, my grandfather decided to get tested to see if he was a carrier as well. As you can probably guess, he was positive. And so was my dad. For men, there is an increased risk of cancer, too, but the risk remains relatively small.
The next step would be for my sister and I to be tested to see if my dad passed this mutation on to us. If you’re unfamiliar with the BRCA1 genetic mutation, the basic idea is this. BRCA1 refers to a protein called the breast cancer type 1 susceptibility protein. The purpose of this protein is to repair damaged DNA or to destroy cells that contained damaged DNA that cannot be repaired. If you have a mutation in this gene, your risk of breast cancer, ovarian cancer, and several other cancers (e.g., uterine, cervical, pancreatic) goes way up. You go from a 12% lifetime risk of developing breast cancer to a 60% risk. For ovarian cancer, the lifetime risk goes from 1.4% to 40%. And while I specify “lifetime,” many of these cancers end up showing up early, when women are still premenopausal. It is heavy stuff, people. The course of action recommended to people with this mutation is different for everybody (depending on how early other people in your family have developed cancer and a host of other factors), but it includes anything from dietary changes and close surveillance to prophylactic surgery (where they remove at-risk tissue which, in this case, would be the breasts and the ovaries).
I was tested when I was 19. Unable to actually pull the trigger and find out the results, I simply didn’t. I opted to remain oblivious. Dumb to my fate. I was away at college. I didn’t want to think about possible future sickness. My 30s still felt like a long way off. And, well, my 15 year-old sister was much too young to think about this stuff yet, so my parents chose (wisely, I think) not to tell her about it.
Because I didn’t know whether or not I carried this mutation, my brain just decided that it was going to assume that I did. And that my sister didn’t. It became part of who I was. I was a person who may very likely get sick at a young age. I was a person who would need to do everything she could to prevent that, like changing my life plan and removing body parts. Over the next several years, this part of my self started to consciously and subconsciously create small changes in my behavior. I quit a few unhealthy behaviors. I started exercising regularly. You could probably say go so far as to say that I became obsessed with wellness. And I began to appreciate life’s transience.
And then, finally, when I was 25, I decided to call the university medical center that was conducting the study and ask them if I could come in so someone could read the results to me of a blood test that was performed 6 years before.
Meanwhile, my sister was growing up. She was told of the mutation. Unlike me (of course, as always), she decided she wanted to know immediately. So, at 21 years old, she was tested. And she was positive.
My appointment was a couple of weeks after hers. I sat, shaking, in an office with both of my parents, waiting for the genetic counselor to arrive. She came in, shook my hand and the hands of my mom and dad, and, before even sitting down, said, “I’m going to cut to the chase. Your test was negative. You do not have the BRCA1 mutation.”
And then came an uncontrollable wave of tears. And, no, they were not tears of relief. They were tears of unfairness. Of loss. Of guilt. Me being BRCA1 positive had become part of my identity and that was now gone. Somehow, the universe got things all confused. I was supposed to have to bear this burden. I’m the older. I was the one who had spent the last 6 years preparing for this life. I should have been the one to live it. Not my sister. My little sister.
This continues to be a struggle for my family. My parents worry about her until it makes them sick. And, at the young age of 21, my sister was told that, should she want the best chance of successfully avoiding early-onset cancer, she needed to have children early and then get her ovaries removed. Do you know what this does to a 21 year-old woman with graduate school on the horizon and very little focus on marriage and children? It fucks things up. The pressure to find “the one” is debilitating. You view your body as a ticking time bomb.
My dear sister is now 25. She’s finishing graduate school. Like many other normal 25 year olds, she is looking for her first real job. But unlike other normal 25 year olds, she gets mammograms and blood work every 6 months, always awaiting that next appointment and fearing the worst. She’s already had to have biopsies and additional tests when things have turned up funny. And, most salient to her, she is single. When first diagnosed, she had hoped to have a couple of quick children and to have her ovaries removed by 30. Now, she is thinking about freezing eggs, just in case (half of which will likely carry the same BRCA1 mutation she has). She is worried about missing her chance of having a baby the normal way. Her window is smaller than ours. To those of us who have struggled with fertility, this seems like a given (or, to me, it does). Freeze your eggs just in case. If you haven’t gotten pregnant by the age of whatever-you-decide, remove your ovaries. Try IVF. But she desperately wants her babies the “normal” way. And I completely get that. A year ago, I would have felt the same way.
I want her to be healthy and well for as long as possible. I can’t push my plan – the plan I had for myself when I thought I was positive – on her. It should have been my body. But it’s not. It’s her body. Her potential future illness. Her potential future babies. She needs to decide.
I just wish there was more I could do. Like take it back and make it mine again. Or, since that is not possible, help her understand her options.
I love her I love her and I want to make it better.