FORCE Meeting

Yesterday, when catching my twin up on my conversation with the breast cancer researcher, she suggested going out to coffee so we could sit down and talk about all of this. And I definitely rubbed her the wrong way when I told her I didn't really want to talk about it (but for the record, I did tell her I'd still go and get coffee with her).

I had also told her that I didn't really want to go to this support group the next morning.

It's hard to explain.

But, I am not really ready to jump right on in with both feet to this whole thing.

And going to a support group was obviously going to force me to think about this and talk about it all in a way that I'm not entirely ready.

You see, I haven't really wrapped my brain around all of this. I'm not sure what being a BRCA2 gene carrier really means for me right now. And I most certainly don't know what I plan on doing about it. So talking about it- yes, even with my twin sister- seems a bit overwhelming when I just assume shove this to the side for a little bit.

Going to a support group? Totally overwhelming too.

And this is pretty odd behavior for me. As my twin pointed out, it's so not like me to not want to talk about something like this. I can't quite pinpoint why I don't want to talk about it- but am more than happy to blog about it. I just know that it's how I'm choosing to cope right now.

Emails are piling up. Phone calls haven't been returned. I'm basically just using this here blog as a way of writing about what I'm feeling and what I don't want to talk about. It's what works for me right now. And I'm sure it'll change once I know more. Or maybe it won't.

The main reason why I wasn't all gung ho about going to the support group was because I knew I'd be overwhelmed by people's stories and experiences. I know I'd hear things that would make this more real that I'm prepared to make it at this point. It'd make me confront this in a way that I just assume not do yet.

But I shoved all of that aside, and for nearly three hours, I sat in a lovely home right here in Santa Monica and listened to 11 other women share their stories of being BRCA carriers and what their journeys have been like.

As predicted, it was overwhelming.

Yes, I know I've used that word a lot already.

I heard about things like sex butter for those women who had their ovaries removed. I learned about flap surgery from those women who had gotten their breasts removed (and reconstructed from other "fatty" parts of their bodies). I met a 27-year old woman who had such a deep history of breast cancer in her family and as a BRCA1 gene carrier, knew she was going to have a double mastectomy and just needed to get something scheduled. I met two women in the group who had breast cancer and found out after the fact that they were gene carriers. One of them, only 38 years old, had chosen to freeze some eggs and embryos, and was most anxious about whether she'd be able to get pregnant and carry her own baby. Or, would she have to give up her dream of having a child on her own and go the route of a surrogate?

The woman who spoke before me, had chosen to have a prophylactic double mastectomy and while going through the recovery for that, had to have an emergency oophorectomy for something they thought was suspicious but turned out to be nothing.

The woman who spoke after me, Rachel, was actually featured in the documentary I saw, In the Family. She was tested, along with her two sisters, and they got the results while the camera was filming the whole thing. I remembered it perfectly because it was the hardest part of the movie for me to see. Her two sisters tested positive and she, the oldest of the three who already knew she did not want to have children, tested negative. She broke down crying in the film, and it was heart wrenching to see her raw emotional reaction to being the only one of of the three who was not a gene carrier.

In the meeting, she talked about how she had already made a deal with God. If any of them needed to be positive, she wanted it to be her. And it just didn't turn out that way. As a result, she was determined to gather as much information as she possibly could for her two younger sisters (both in the late 20's I believe) and to be their biggest supporter down this road. It was an honor to meet her.

Many more women shared their stories. All of the compelling. All of them sad. Another woman talked about the anxiety and stress of the financial burden her surveillance was putting on her.. Almost everyone mentioned the total incompetence of dealing with insurance and having to fight those claims. And of having to deal with medical institutions that had gotten too large or too impersonal or both. Making it commonplace to have to jump through hoops and spend hours on the phone scheduling appointments and validating why, at such a young age, it was necessary for them to schedule a mammogram or a breast MRI.

My head was full with information. Almost too full. Having gotten the news just a week earlier that I am a carrier, made it a little much. I wasn't prepared to jump in so soon. But I did anyway.

As many people have pointed out to me, I get that having this information is a gift. But it's also a terrific burden. It's something that will never go away. It'll always be there, in the corner (or sometimes front) of my mind. Like the birthmark I have on my back. I know it's there, even if I never see it or think about it. There's no escaping it and it'll always be a part of me.

I talked to the group about how I didn't want this to define me. How, eventually, once I got over the initial shock of it all, I'd want this to fade into the background. And one person answered and said that she felt eventually it could come to that. For her personally, it was very much front and center at the beginning and then, once you figure out a plan- surveillance or surgery- it was easier to let it slip from the forefront. But that at scan time, it would sneak back up and cause anxiety and stress.

So I guess that's what's in store for me.

At the end of the day, the meeting was valuable. Just as I knew it would be. I was able to connect with people who "get it" and gather more names for my team of medical support. Sure it was overwhelming and more than I wanted to deal with, but, you take the good with the bad.

Can I handle it?

I have no doubt.