Two weeks ago I participated in a high risk breast cancer study and had blood drawn to be tested for the Breast Cancer (BRCA) gene. Carrying this gene means a 84% lifetime risk of breast cancer and a 27% lifetime risk of ovarian cancer. My grandmother had the gene as does my mother. I had a 50/50 chance of also carrying the gene. After the blood draw, I went home and wrote a little bit about my feelings. Today I got the results back.
Within the first 10 minutes of meeting with the genetic counselor, I had to answer some rather personal questions. She wanted to know about my boobs and ovaries obviously. But she also wanted to know about my preferred method of birth control, my future family, my relationship with my husband, my diet and exercise "regime", my favorite NPR podcasts and so forth.
Then she wanted to know more about Booker and Teichert. And suddenly I was really bothered. Like tears welling up and fists clenching bothered. Why had my boys suddenly entered this discussion? They are 3 and 1. And they do not have breasts and ovaries.
But there she was writing down their names and birth dates beneath mine. And there my mom was, crying like a baby... and looking like one too with her fuzzy white post-chemo head. I wanted to reach across the table, grab that pen and cross their names out. They are babies and they are boys and this has nothing to do with them.
But of course, it has everything to do with them. Because I have potentially given them something even worse than my boring brown eyes. And then I understand why my mom is crying now and why she was crying six months ago when she told me she was BRCA 2 positive.
Deep down in my DNA sits one mutated gene among thousands of normal, functioning genes. That gene has a name and a destiny- to potentially spawn a deadly form of breast and/or ovarian cancer. And this gene doesn't discriminate.
It didn't care that my grandma couldn't attend my mom's wedding because she was too sick from cancer treatment. It didn't care that my mom's plate was already crowded with other serious physical, mental and emotional challenges before she got her diagnosis. And it certainly doesn't care that I'm happy, young and want to use my ovaries and breasts to grow a large and healthy family.
Nope, this gene affects the whole family- men and women, young and old, Japanese and not. But the good news is that at least I know about it. My grandmother died from breast cancer, my mother will beat it and, God willing, I'll never have to face it because I know and I will be prepared...
But that's the future and this is now. And right now, I'm sitting in an office with a genetic counselor eager to fulfill the counseling part of her duty and my eyes are watering even though I promised myself I wouldn't cry (who cries over tiny microscopic genes?! SUCK IT UP). She tells me I ought to write a "love letter" to my mom and even though I laughed at the idea at the time, I'm going to give it a shot:
Remember when I was in 6th grade and kinda tubby and you brought home a maternity dress and suggested I wear it to my first school dance?
I forgive you.
Remember when you completely forgot my 22nd birthday?
I forgive you.
Remember when I had that baby cut out of my abdomen and you came and stayed in my 400 square foot apartment for 4 weeks to "help"?
I forgive... I mean, thank you.
Remember when I was an embryo and you gave me that gene that means I have a pretty good chance of getting breast cancer?
I forgive you. And to be honest, it never occurred to me that you would require any sort of forgiveness. But when I think of my own children the guilt I feel is enormous and surprising. And I find myself begging for their forgiveness because of this gene even though they are young and they are boys. So I understand why you cried about this and I want you to know that I forgive you even though it feels silly to do so and pray that my children can do the same, because that does not feel silly to me at all.
Your Genetically Mutated Daughter
Even though today was a super crappy day, there was some humor to be found.
When the genetic counselor walked in today, she asked my mom and me what we thought the results were. We both thought it would be negative. I'm healthy, I'm lucky, why not...
GC: Margaret, I'm sorry to say that the results are actually positive.
Me: (not telling what happened here, it may have involved some blubbering)
GC: I'm so sorry, here are the results from the lab.
(hands me the paper)
GC: There's your patient number, your birth date, the name of the gene we tested and the results.
Me: But I wasn't born on December 16th, my birthday is on Halloween.
GC: Holy sh*t.
GC: These aren't your results.
(I would like to insert at this point that the genetic counselor may have used some profanities and freaked out a little bit but she really was quite professional and awesome about the whole thing. I probably would have sworn too. Sometimes these things happen :)
GC: I've been doing this for 20 years and this has never happened. I'm a complete a**hole. I've got your results on my computer back in my office which is in the building next door. Want to take a walk?
So we walked for what felt like an hour to her office where I was told, for the second time, that I do in fact carry the gene. Bummer. Double bummer.
And then I told my siblings...
Marie: MARGARET, did you get the results?
Me: Yes and the results were bad.
Marie: Oh, so do you have the gene?
Me: Marie, there's really only one good result and one bad result. I have the bad one.
Marie: So you have the gene?
Me: Yes. Not having it would have been the good result.
Me: Oh hey David
David: What are we doing for dinner?
Me: I dunno, I'm in Salt Lake. Don't you remember what I'm doing today?
David: Um, taking someone's photos?
Me: No, I'm getting the genetic screening results back.
David: So are you going to die of breast cancer? (his exact words)
Me: Nope, not if I (and annual mammograms + MRIs + possibly prophylactic surgeries) have anything to do with it.
Anyways, it's been a long and emotional day. Thankfully, I'm young and don't have to make any big decisions soon. For now I'm going to eat some pumpkin cheesecake and pack up the car to go back home... to my husband who loves my breasts- mutations and all.