BRCA 2 Gene & My Decision.

Fear.  It’s always been a struggle. Scared to fly, scared to stay the night at my house alone, scared I’m going to get cancer, scared I’m going to die, scared about what happens when I die, scared of running races. Scared of the unknown. What if, what if?

It’s very real and for a long time, I let it control my life. It’s a constant work in progress but I refuse to let it win. I once had a doctor who wanted to throw medicine at me to try to make it better. (this was the same doctor who diagnosed me with something I didn’t really have and also tried to throw medicine at me for that too) If a pill can “mask” it or “fix” it- they’ll give it to you, instead of addressing the real problem. That is what I call one, lazy, pill happy doctor.

I changed doctors. I was anxious, scared and fearful and in return exhausted from living in that state everyday. I know that medicine is necessary sometimes, but this wasn’t something I needed to cure with medicine. This was something I had and have to battle without that kind of help. It will always be with me on some level, because I’m human, but I like to think it’s getting better as I get older. And wiser.

When I was 6, my Grandma had breast cancer. She was 48. Her sister had died from it years before. My Grandma’s cancer was stage 4 when she finally went to the doctor. Of course I was so young, I didn’t realize how sick she really was- I found that out years later on a phone call with her when I was 23. She was healed and 25 years later diagnosed with ovary cancer. She’s been battling this on and off for the past 6 years.

When I was pregnant with Marshall she underwent a trial treatment at the Simon Center and did not respond well. She was getting very sick; so sick that she stopped the trial early to go to a different treatment, which ended up working beautifully.

When Marshall would a little guy, she would hold him and tell me she didn’t think she’d get to. She’s still here, not living fearfully and appreciating life more than anyone I’ve ever known. When she spends time with Marshall, she is grateful she gets to. And for her battle, she refuses to let fear win. She just finished her last round of chemo and is feeling great. She has more energy than most people I know, let alone someone who is 72 and been battling cancer for the  past 6 years. If you didn’t know her, you’d have know clue what her body has been through.

A few years ago, we found out my Grandma carries the BRCA 2 gene mutation. This is a gene mutation that is very rare and oh yay, it’s in our family. I’m sure many of you have heard about it since Angelina Jolie came out about having it a few months ago. (She has the BRCA 1 gene.)

So this nasty mutation has made it’s way to several women in my family. My mom has two sisters. She and one of her sisters have the gene. I have two sisters, they are both are negative. There are two cousins of my mom who have the gene and have recently overcome breast cancer. My mom and aunt didn’t find out they had the gene until they were almost 50 and both immediately underwent preventative surgery, having a prophylactic double mastectomy and oophorectomy. I knew once my mom found out she was positive I needed to get checked. But I really didn’t want to. I was scared.

Early June, after three years of putting it off, I stopped letting FEAR win. No matter what I told myself, the real reason I wasn’t getting my test done is because I was scared. Scared of the unknown. Whether I knew it or not though, the gene was either there or it wasn’t. I finally went to get my blood work done. It might seem mindless to some, but it took a lot of courage for me to do this. It took a lot of courage to even make the phone call to make the appointment.

I am inherently more like my mom than either one of my sisters in more ways than I even care to talk about. Beyond being built just like her (except for my butt. She has no butt), things about my mom that drive me crazy, I do. All the time. Things about my mom that I love, I also do. Although I know all that didn’t mean I carried the gene, it made me feel like I did. And what were the odds that all three of us sisters didn’t have it? Surely if my sisters were both negative, I’d be the one. And I should mention, the one thing about my mom that I didn’t get is her non worrisome personality. She doesn’t worry about much, instead of going through all the what ifs, she educates herself and tackles. That, is what I am trying to do. Right here. Right now.

I wasn’t being negative about the test, I really wasn’t, but I just knew I had that stupid gene. And I do. I hate the gene. I don’t want it. When my doctor (Dr. Hughes) called, and I didn’t receive that pretty little paper in the mail that said I was negative, I knew I’d have some major decisions to make. When she called, I was having a nice little day. At the time, Marshall was napping and I was in the kitchen making granola or something like that. I was prepared for her to call, I wasn’t surprised. I cried a little bit, but the thing about it was in 30 minutes Marshall would be up and I needed to hold my shit together.

As soon as I talked to Dr. Hughes, (who I really love), it was action immediately. She said I’d need to come in and get a mammogram, MRI, ultrasound of my ovaries and have my CA125 blood levels  checked… every six months. My immediate thoughts were- I’m 29. I don’t want to have panic attacks and be full of anxiety every six months waiting for these results for the next however many years. Let alone sit through an MRI every six months. Have you ever had one? They are long, loud and not very fun. Ugh. She kind of thought I might want to wait to have any preventative surgery until I was done having kids.

I’m not waiting. When I told her that, Dr. Hughes referred me to a breast surgeon, who I also really like. The fact is, having this gene puts you at an 84% lifetime risk of getting breast cancer and 27% lifetime risk of ovary cancer. He basically said it’s pretty much guaranteed that in my lifetime the breast cancer will happen and we have no way of knowing when or predicting. No way of knowing when. I don’t like that. This surgery takes my risk down by 90%. I’m not playing with that.

I generally shy away from even talking about cancer. I don’t even like typing the word right now. It makes my mind run wild. 

Back in July, two days before my half ironman,  I had all of my tests done. I had to wait two days for the MRI and blood level results. What a distraction from getting nervous about the race. My mom kept reminding me that this was all just a routine, it’s not like there was reason to get the tests done beyond finding out I had the gene. But, my mind said, well what if they do find something? And thank God your finding it now?  And then what? And what if, what if, what if. That my friends, is the devil. Big sigh of relief, everything checked out fine. I was actually at the expo of the Ironman in the athletes meeting when they called with my MRI results. I had literally been staring at my phone all day just waiting. You should have seen how fast I jumped up and ran out of that meeting to answer the phone. When I raced the next day, every time it hurt or my mind went to a negative place, I reminded myself how I should be grateful for my health and grateful that I get to do this.

I’m really glad that I’d been so dedicated and involved in training for the race.  I refused to let this stupid gene mutation interfere with my goals and really training gave me the outlet I needed. I remember swimming laps thinking about it and I can guarantee that my thoughts were a lot more positive in the pool, on the bike or out running than they would have been sitting around feeling sorry for myself. 

I had things to accomplish and in doing them, they helped me cope. It’s not the end of the world. Nothing has changed right now. The gene has always been there. Sometimes I feel like I’m a ticking time bomb though and need to rush and get every organ possible torn out of my body. But I will choose to stay calm, positive and embrace this beautiful like I GET to live.

So the fun begins, on Tuesday, October 1st, I will have a prophylactic double mastectomy. That’s kind of hard to say, I’m honestly struggling with comprehending that it’s even happening. There is a six week recovery and I’ll be undergoing reconstructive surgery which should take around three months from my understanding. I’ve met with my breast surgeon and will meet with the plastic surgeon today.

From there, we’ll see what happens. In my perfect world, I’d like to have another baby soon, run a few marathons, have another baby and then have the oophorectomy. But I know I can only do so much of the planning. I’m not the author of my life, it’s not all in my hands. So, we are going to take this one step at a time. Give up the worry and give the control to God. First step, is to get through the surgery and move along to what’s next.

• My Grandma tells me to not let my mind wander, you can’t even go there. Don’t start playing the what ifs.

• My mom tells me I’ll come out of this stronger than I ever was before.

• My sisters tell me I should be excited to get new boobs

What I know to be true is- knowledge is power. When I walked into the surgeons office for our first consultation, he told me I was a lucky girl. Although having this gene mutation certainly does not make me feel lucky, I understand his statement. We know that I have the mutation and we can come up with a plan of action. We can be proactive. And I am thankful for this.

It’s easy to let fear stand in the way of doing what you want to do or know you should do, but it’s not worth it. You have power of your thoughts, your actions and the decisions you make. Loathing in self pity only makes you miserable. 

You can’t grow and feel alive when fear clouds your vision.  Am I scared I have this gene? Yes, a little. But a lot less now that I actually know instead of just wondering. Am I scared of this surgery? Yes, a little. I’m sure it will feel more scary as it gets closer to go time.

But, when my life is over, I won’t look back and think about how much good I did and how happy I was when I was scared. Fear paralyzes you. It paralyzes you from moving in the direction that you should and can go. If you let it win, it kills the vibrant, exciting, good stuff that is in store for your life. It’s not worth it. There’s too much to soak up here during our short time.

So, I guess this leaves me with my rambling thoughts on the surgery: (please note- this list isn’t a pity party- just my HONEST, RAW feelings on it)

• Although it was tough and a little lot stressful at first, I’ll miss breast feeding any future children I might have. It’s a special time and like nothing I’ll ever experience again. I’m thankful I was fortunate enough to be able to breastfeed Marshall.

• I’m nervous about how the new boobs will feel. My mom says at first I’ll feel like I have nerf balls on my chest once the reconstruction is complete. Not cool.

• Losing feeling. Ugh. After my c-section it took longer than I expected to regain feeling around my scar (over 6 months) and it’s really strange to not be able to really feel a body part. I remember scratching right by the scar and not being able to feel the scratch. It freaked me out. I didn’t touch it for months because I was scared the feeling wouldn’t return. For the most part it has, but it took way long. This time, the feeling won’t really come back.

• I’m nervous about those gross drainage tubes I’ve heard all about.

• The tissue expanders freak me out.

• Although, I try not to care what people think of me- I can’t help by worry that when I wear a tight shirt people will look at my new boobs and know they are fake. Think I got a boob job out of vanity. Especially the regulars I see everyday at the gym. I’m not a baggy t-shirt wearer at the gym and I refuse to become one.

• I’m a little sad I’m not racing a fall marathon, I was going to try and squeeze one in on my only free weekend before surgery, but I don’t think it’s going to happen. Maybe it’s working out for the best. I think my body and mind would thank me for a little rest if I’d let myself enjoy it.

• It’s not like I have any kind of boobs that would win a boob contest. Ever since I got to the age where boobs happened, which didn’t happen for me until I was much older than my peers, I’ve always kind of just been “eh” about them. Nothing special. Small, kind of far apart, I really never loved them much. I’ve never really cared either. Other than one time when I was 15 and cried at school when someone made fun of me for it. (I won’t name names….)

• But, they are leaving now. And now my almost 30 year old self is deciding to like them. Maybe it’s because I know they are leaving and I’m not so scared of them anymore. And by scared I mean, I went through a phase the past year or two and into my pregnancy where I obsessively checked for lumps, like 10 times a DAY obsessively. My doctor told me to settle down and only do it once monthly right after my period, but I was living in fear and when you are living in fear you do irrational things. I guess I won’t be doing that anymore.

• As non-emotional about losing them as I’ve tried to be, when I think about waking up from surgery without them, I get sad.

• I still have some major decisions to make about some of the reconstruction process and I’m not totally sold on how to make those decisions.

• I’m thankful it’s happening now. I’m scared about the surgery, yes, but I’m thankful for the circumstances in which it is happening. I’m proud of myself for standing up to my fear and making this decision.

• I’m going to have perky boobs when I’m 50 people, it’s ok to be jealous.

• I’m thankful for the knowledgable, crazy smart scientists who figured this mutation out and the proactive doctors whose care I am under.

• I’m thankful for the other strong women in my family who I can lean on, ask questions to and know that they’ve been there and will be there for me.

• I’m thankful to have family and friends near by who I know will be willing to help post surgery. I think I will recover fast, but there might be days I need help with Marshall.