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.

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§ 16 Responses to My sister has it worse

  • I am so sorry to hear this 😦 what a burden she must bear, with lots of pressure. You are a good sister, and I’m glad she has you. I hope she never gets the bad news she is waiting for.

  • Aramis says:

    This really moved me. Although nowhere near as scary as cancer, I had the same feelings for my sister last year when she had two miscarriages. She already has one daughter and is trying for a second child. I’d been dealing with my infertility for a year or so when her issues started. I felt the same way as you…that this shouldn’t happen to her, that it’s my thing to deal with, that she’s supposed to be OK. I can’t imagine how scary it is to have to worry about losing your little sis. All you can do is be there for her and let you know you support her and will help her with anything she needs. We can’t protect them from everything.

  • Sadie says:

    I’m sorry your family has this to deal with. When I was 11 yrs old, I was diagnosed (as terminal) with a rare form of bone cancer…Long story short, I beat the odds, but because they didn’t expect it, they also didn’t prepare me for all the side effects, both from the disease and the treatments, including but not limited to my fertility. In my case, there’s still not enough research and they don’t know if or to what extent my history could be a contributing factor to my current situation. Anyway, all this to say that I understand some of what your sister and you have grappled with in terms of appreciating life’s transience. I’m glad you have each other. I hope she also proves to be one of those whom random odds favour.

  • Wonderful, moving post. Your sister is in my thoughts. I am also the oldest and I totally get that sense of responsibility. Wishing wellness for you both.

  • Gypsy Mama says:

    Sibling relationships are so interesting. I always wonder how people raised by the same parents, in the same environment can turn out so different.

    We all deal with issues and adversity differently. It must be so hard for you to step back and allow your sister to deal with this in her own way, which is so very different to how you dealt with it (when you thought you had it). I admire your strength and support of your sister.

  • Thank you for sharing this story. I feel like I learned something new about what impact this genetic trait has one families.

  • SM says:

    So sorry to hear what your sister is going through! Please pass along my good wishes and hugs!

  • Daryl says:

    That’s rough. I have a younger sister, too, so I can imagine how difficult it is not only to watch your sister deal with constant monitoring and testing, but to not be able to do anything about it. I hope she beats the odds!

  • Wow. That’s intense. I watch the new 90210 (don’t judge me haha) and one of the story lines is one of the girls dealing with this exact same situation. She has the BRCA gene and wants to have a biological child and it’s (of course) a huge ordeal. It was interesting to read your story and see that the way they are depicting it on TV is pretty much the true story. Thinking of and praying for the two of you!

  • JustMe says:

    You know, I think work this into a publishable essay. It reads like something you would find in a magazine. It has so many important pieces – sister relationship, life wellness vs cancer, difficult choices, and fertility. Interesting how your readers all responded to different parts.

    That being said, I know this isn’t just an interesting essay to you. It’s your life. I also have a sister who is four years younger. I related to the moment where you found you were negative and she was positive. I know I would want to take it away from her and carry it for her. I can’t imagine the feelings you must have.

    Your sister sounds like such a strong person. Sending thoughts her way…

  • YeahScience! says:

    Wow, this is intense stuff… it’s so hard for someone in your sister’s position to know what the “right” thing to do is. And so difficult for you to know how to guide or advise her. A friend of mine who has breast cancer running all through her mom’s side of the family decided to have a double mastectomy after having two kids, which is a pretty drastic decision, but obviously puts her mind at ease. Meanwhile, ovarian cancer runs throughout my husband’s mom’s side of the family, so I’m sure that genetic mutation is at play, but not sure if he’d be able to pass it on to our kid(s). In any case, his sister has also been getting routine ultrasounds and bloodwork every 6 -12 months, and at 30 years old is also facing these questions about when to have children vs have a hysterectomy. Really makes a “regular” infertile’s struggles seem all the less horrible, in a way…

  • Stasy says:

    I can’t imagine what your sister is facing or how you’re feeling about it. Just huge HUGS to both of you.

  • bustedoven says:

    Ohh, your poor sister — how awful to deal with that kind of pressure and heaviness at a young age. I feel for both of you.

  • I have a friend from college that got breast cancer soon after graduation and prior to her treatments, double mastectomy, and boob job froze her eggs just in case she and her boyfriend (now husband) ever wanted to have kids. It’s so tough- especially having to think about these things when you are not ready and don’t have a partner. I’m so sorry that your sister is having to deal with this…..

  • Amber says:

    My sister is 5 years you get than me. We didn’t get along in our younger years either, but I have always been protective if her. I can’t imagine what that must be like for your family, to prepare for major illness before it even takes place. I’m so sorry.

  • Emz says:

    Woah, what a shitty situation. I hope she falls on the positive side of thoae scary statistics.

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