So much to take in. . .

Obviously my mind has been on the life changing news I received recently. My efforts are now focused on prevention, though I have scheduled my consult with a surgeon. At first, I needed to digest. Now, I am ready to fight. I am doing a lot of research about my diet and its affect on my risk for cancer. The medical field in general will not give you a definitive answer about diet and how it affects us. But, it kind of makes sense that it does in fact effect our risks of all sorts of cancer. These are two of the books I just ordered, I hope to find them useful in this process.

I know I have to make changes and I am slowly gearing up for that. I am not going to go cold turkey, because I think that would be hard. I don't mean to sound like I eat a horrible diet, because I certainly do not. My issue is I eat a healthy diet but I still love to eat some not so healthy things. They are my temptations that I mostly avoid, but are still there. My least favorite thing to give up will be....dun dun dun.....soda. You all know how much I love me some Dr. Pepper. Recently, due to weight loss efforts, I swithed to diet soda (which I don't like as much but it'll do) and now I know that I need to stop that as well. Who knows what the risks of aspartame are and how they affect people like me. I guess it is a small price to pay for some peace of mind.

My major focus right now is just to lose weight, for a lot of reasons. Once I get back to my healthy pre-pregnancy weight, I think I'll be ready to ditch the diet soda and regular soda for good. Though, I am sure I'll indulge from time to time. Moderation is key in any lifestyle choices we make. The one area that I don't have to change or worry about is my activity level. I do enjoy to exercise and keep in shape and that in itself reduces my risk for cancer. At least I can mark one thing off the list. Next up, a healthy weight and an even healthier diet. I can do it.

Love this!

The statistics

Its been a few days since I met with the genetic counselor. As I walked out of the appointment, I realized I will be ok. I have not been given a death sentence--Yes, I have increased chance of a few types of cancer but  know what I can do to prevent that from happening.

So here are the stats:
87% chance of breast cancer
44% chance of ovarian cancer
7% chance of pancreatic cancer

If I am pretty drastic with my preventative measures, meaning surgically drastic, then my risk of of breast cancer goes down to 10% (same as the general population). I found out good news about my type of gene and ovarian cancer, also. It seems most of the cases of ovarian cancer that show up in BRCA 2 carriers are in women in their 40s and 50s...not 30s. So, the pressure to remove them is not high at this moment. When I do remove them my risk of breast cancer also improves to 6% (from 10%). The counselor actually advised against removing the ovaries for someone my age with two small children. Surgical menopause is not something I want to experience right now without a good reason. Obviously, the risk of pancreatic cancer isn't as high but it is drastically higher than the regulation population at 1%. Dan asked how we can be vigilant about my screenings for that and the response was that at this point they are doing research on how to "screen" for pancreatic cancer. Right now, the reason it is so deadly is because once you have symptoms the cancer is too far advanced and it is too late for treatment. Lets hope that the advances in pancreatic cancer screenings improve soon, for everyone's sake.

Dan and I had a lot of questions, we spent an hour and a half with the counselor and got a lot of answers. Though I could tell Dan's anxiety level was higher than mine, I think he also felt better after speaking with counselor. I did not get confirmation that diet can affect my risks. At this time there is not scientific proof that the two are linked, though obesity is a risk factor and we know that diet and obesity go hand in hand. So, Dan and I decided to be even more extra careful about what eat in this house. It will take some time to completely rid our house of some the "not so healthy" choices we make, but we have a good reason to follow through. As far as the kids goes, their chance for having the gene is 50% but there is no screening for them now. We need to go on about our life and making healthy choices for them with their diet and exercise level. Once they are mature enough to handle this process then we can let them know of their increased risks and talk about genetic testing. If Sean is positive, he would have a 20% chance of prostate cancer so obviously this gene is more harmful in girls. Ahh....my sweet Carter. I cannot see her go through this so lets all just hope that by the time she is my age, that breast cancer will be obsolete and they'll find a cure. As much research and money that is being poured into this disease, you would think in 20 years we would be able to put a stop to it.

I mentioned that I felt like a double mastectomy and reconstruction was the best most obvious choice for me, I think after having the appointment and hearing the statistics, I am 100% sure that is what I need to do. I need to be screened more often than the general population, which means every 6 months I have to have a mammogram and an internal ultra sound to monitor my ovaries, etc. I cannot sit by the phone every 6 months and wait, and wait, and wait for the bad news to come. That is no way to live. If I have the surgery I'll never even need another mammogram. I'll still have to have the ultra sounds for my ovaries but my risk for ovarian cancer is not that high, right now. I just feel like this is the best option for me. I know it seems drastic but I have done a lot of research lately about a double mastectomy and reconstruction so I do understand what I am getting in to. I know it will be hard, I know I won't be able to take care of my kids for a decent amount of time and there will a lot pain to go along with it. I asked the counselor point blank, given the drastic reduction in risk, it seems so simple...a double mastectomy is the only answer. She agreed.

Dan and I were able to get away and have a "date" night last night which was good timing.(thanks to a great friend who knew we needed some time) Though our conversations were that of the typical "date" night it was good to figure some things out. There is not really a great time to have something so drastic done to your body...so figuring out the timeline is difficult for us. I know I will need help with the kids so the summer seems logical...but then we have family vacations and all sorts of summer fun that would be dampened by that. So, in my opinion summer is not an option. I want to enjoy my time as a stay at home mom and do all the wonderful things that we are able to do. Fall is the top of my list but it isn't easy for Dan to take off a lot of time from school. We have two weeks off at Christmas but again, that would make it hard for me to enjoy my family time with the kids. I guess after I meet with the surgeon we will need to make a decision about the timeline of this surgery.

After speaking with some who've experienced the exact surgery it seems that the first few days are tough and he'd need to be very actively involved in my medical care. To spare your stomachs, I won't get too detailed but I asked him if he was ready for that? Will he be able handle seeing me like that? In pain, in a hospital? At least I have some time to help prepare him for that. Not sure any husband is really "ready" for something like this.

So, now the next step is my MRI screening in a few weeks, a consult with an oncologist (who usually sits in on the genetic counseling appointment) and a consult with the surgeon of my choice. The Dr. I already have has a great reputation for this type of surgery and so I'll plan to meet with him in the next few weeks. I have a lot of medical questions that I need answered. I know there will be some emotional stuff that goes along with changing my body in such a way but I feel like because it is MY choice, it will be easier (at least I hope so!). It isn't being forced on me, like those with cancer, like my mom, it is MY choice and I know what I am getting into and I know the payoffs make it well worth it.

Genetic Counseling

Today is the day of my genetic counseling appointment. The counselor will be the one to give me the, perhaps hard to hear, news which include my actual risks for breast/ovarian and other types of cancer. I've been good and stayed away from "googling" this information. I have been reading some of the websites that focus on "pre-vivors" which is what I guess I can call myself. It is a name for those who know their risks and take some steps to prevent cancer (some more drastic than others). I've found a few helpful websites, one being facingourrisk.org which stands for: Facing Our Risk of Cancer Empowered. It is was nice to read some stories from those who have been in my shoes and made some similar decisions. At this point, I've come to terms with the fact that a double mastectomy and reconstruction is in my near future. I know it might seem so drastic to some but I cannot live my life "waiting" for the bad news to come in. I've had a breast surgery before, seen my mom go through it, and have a pretty good idea of what to expect so it seems like a simple solution, though not a painless one. I have a 70% chance (if that number changes after my appointment I'll update) of getting breast and ovarian cancer. There are not a lot of ovarian cancer survivors. That is why one of my important questions for the counselor is when is the best time to have my ovaries removed? I would be put into a surgical menopause immediately and from seeing the effects of menopause on others I know that will not be a fun time for me. I also want to talk about what I can do to prevent cancer as far as my lifestyle changes. I want to know what foods I should avoid, or how I should change my diet. I know now, sadly, that my kids have a 50% chance of also carrying this gene. What can I do to keep them safe? When do you tell your child that kind of information? At what age is that appropriate information to share? How do you even tell them such information? Ugh. So many issues that have come up that I did not foresee. The thought of either of them being affected by this breaks my heart but at the same time at least I can take preventative measures for them. I know it isn't my fault, passing a gene for this is no different than passing on my hair color but it obviously has much different consequences. I am excited and nervous at the same time for my appointment. If I have a plan, I'll be ok and today is the first step in making that plan.

Am I so strong?

Its been a few days since I found out the news. I posted on facebook that I had recently gotten some bad news. For most, they knew exactly what that meant and offered words of support. Unfortunately, those who didn't know assumed the worst and I got lots of "are you ok?" emails/phone calls/and posts. I didn't mean to alarm people but like I've said before, I wasn't interested in talking about it yet and that was the easiest way to inform my close friends.

During the past few days I've had many conversations about what is going on and I get the same reaction from most, you seem so calm, and so together and so strong. I guess I am not sure what kind of reaction I am supposed to have? Should I cry all day? Stay up all night worrying? Skip meals because of the stress? (oh boy that would be nice for the diet!) I don't know? I am reacting in the best way I know how...being rational and calm. I just don't worry about things and so this is no different. Like I said, I am healthy, I exercise more than most, am not overweight (though I do have a few lbs to lose) so why should I assume the worst? Why should I worry that I have cancer right now? I don't know, I am confused. Am I not worrying enough? Am I in denial? Am I being careless with such a huge life altering decision? I guess you'll never know how you react to news like this until you get it. Knowing the fate of your future is a odd information to have. We aren't supposed to know our fate...right? Like in the Back to the Future movies, (LOVE those movies) if we know too much about our future it can change the path we are on, or even interrupt the "space-time continuum", ha ha. Is this any different? How much different will my life now be knowing this information? Will it be for the better? Or worse?

What about my sister? Should she find out? In my mind knew it was better for me to be the carrier if it had to be one of us, though I know her chance of getting it is the same as mine. I am in a different place in my life and I am not sure knowing this in your 20s, unmarried and without children is the best plan. But if it were me, I don't know what I'd do.


I am glad my reactions to this are surprising to people and it makes them assume I am so strong. But what if I am not? What if I just keep telling myself I am not scared to mask the truth? What if deep down I am terrified? I just don't know. Maybe after the news settles in a little I'll be more in tune with my feelings. I just know bottling them up and not talking about them isn't helpful which is why I know this blog will help.

The two week wait....

Its been two weeks since my blood was sent to the genetics lab. I haven't necessary lost any sleep over the results but I am anxious to find out. I gave the Dr. a call during the day to see if the results were in. I didn't hear from her and so by 4pm I had called my family to let them know I wasn't going to find out today. I headed on through my normal Monday routine which included going to the gym at 4:45. I was using the restroom when my phone rang. I assume most don't bring their cell phone with them to body pump class but I do normally just in case Dan needs to reach me. So, noticing it was an unknown number I went ahead and answered it, in the bathroom! It was my Dr. and she didn't tap dance around the results. She told me I was in fact positive. My response was, "ok". I guess I was not really in shock because I had a gut feeling all along that I was positive for the gene. She asked me if I was ok and all and I said, "I am actually in the gym bathroom and I cannot really talk right now." I explained that I would call her in the morning so we could talk about what this means.

Some of you can probably guess what I did next--I went to body pump and had a great workout! If you know me at all you know that not much stands in the way of my workouts! I think the timing was great. I was in a public place so I couldn't get hysterical and I had a great way to relieve some stress before going home to tell Dan. I had texted my family (which now I see was dumb because they all immediately called me back and I couldn't answer) and let them know the news and made plans to call them when I was done with class.

To this point, I still have not cried. I couldn't cry in front of Dan and alarm him even more, and I didn't want to upset my mom anymore than I knew she would be already. So, I held it in.  I called my mom at 6:15 which gave her a good hour to be hysterically upset about it before I could speak with her. She was devastated and blames this on herself, which is a normal mom reaction. I tried to rationalize with her and it wasn't really working. At this point I am thinking, this is ok, I know I can do things to prevent this from happening to me so I am going to be fine. It is all ok.

As a counselor, I know self talk is very influential in our thought processes and responses to life events. If I keep telling myself and my family that I am ok, it will be ok, I'll start to believe it. I did make it through the night without any tears. When I walked in the door I told Dan the news and his heart sank. The kids were with us so obviously we didn't have a lot of time to talk or even get upset. So, we went on about our normal nighttime routine and then I headed to bed. Like I mentioned before, I am not really that interested in talking about right now and I am certainly not a "worrier" by nature. I slept great and didn't really let it creep into my thoughts. When you are working full time and busy with two kids you have two advantages 1. you are exhausted and 2. you have no time to worry!

I could feel the stress brewing by morning and as soon as I pulled out of the driveway, I started to feel the tears coming. I cried quietly on the way to school because at that moment it hit me...I could have cancer right now! This is as scary as crap! Why am I so calm? What will I do? I cannot have cancer, I have two small kids, they need me! These emotions flooded my mind as I was coming into work. I knew if anyone hugged me or tried to comfort me that I might lose it. After first hug from a friend...I did lose it. I let it all out. I cried and cried and cried some more.

I did feel better after I let it out but I still am thinking rationally. Why should I get worried over something that I don't know to be true? If I have cancer, then I'll worry. Until then, I'll stay busy with work, focus on my plans to prevent cancer, and live my life. Living in fear of something is no way to live. I have a lot of be thankful for, I live a healthy lifestyle, exercise, eat well, so there is no reason to believe that anything will turn up on my MRI in a few weeks. I can't say that my emotions and worries don't creep into my head sometimes but for the most part, I am ok. At this point, I don't have time to worry about something that may happen. Instead, I'd rather take steps to make sure it never does.

Genetic Testing

I was able to get in to have genetic testing done with the breast specialist rather quickly and conveniently the office is located right across from my school. While Carter was bouncing on my knee, I asked questions and consulted with the Dr. It seemed obvious that getting tested was the best choice for me. I started to ask her questions about a mastectomy and the ovaries and she helped me understand the process a bit more. Whew. I felt better after speaking with her and hearing about the process if in fact I do have the gene. I left there that day knowing that I would know my fate in two weeks. Will it be a long two weeks?