One breath at a time. . .

If I am being honest (sorry Mom  I know it is hard for you to read) I hit rock bottom recently. I am not sure what happened but it all hit me. You could probably tell from my previous post that things were starting to take their toll on me and my ability to control my own emotions. I am not going to lie, I am frustrated. I am frustrated about a lot of things. One, I have recently gone back to work and I'd rather be at home with my two cuties, work is very stressful right now and because I leave on time everyday, I never. can. catch. up. Also, my running is almost *embarrassing*. Two years ago, I ran a 10K at an 8:55 pace. It was the peak of my running, I was on a high and I was so proud to achieve that pace as a self proclaimed "slow" runner. A year ago, I was training for a 15K when I found out I was pregnant. One 8 mile run followed by a few cramps put a stop to that and it was all downhill from there. Sure, I have a load of excuses as to why my running isn't where it should be but nonetheless it is frustrating. I am frustrated that I am missing work often to go to Dr.'s appointments because that makes it even harder to catch up, not to mention time away from work=leave with no pay. I am frustrated because my mom is going through chemo and I cannot be there to help and support her. I am frustrated because I am so distracted at work that it is affecting me and my ability to juggle my responsibilities.  I am frustrated because I know now information that drastically will change how I will my life, forever. It will never go away. I can't take it back and live in denial. Now that I know, I am charged with the commitment of doing something about it. I am frustrated mostly because I let myself get hysterical and I am not sure why.

So...I knew what I needed to do. Thanks to a friend from high school pointing it out on her blog (breathofsunshine.wordpress.com), I needed to run until I felt better and I did. I put on my running shoes, cranked up my ipod, walked to the track and in my mind I said I will run 3 miles. 2 miles has been my hurdle due to some IT band pain but I knew it was mostly mental. I needed to get past that mental barrier stopping me from improving and regaining my runners strength. I left my garmin at home and just ran. I didn't worry about pace or time or anything. I set a goal for myself (12 laps) and that is what I did. Each breath I was taking in and out was a release of some of the frustrations. I needed that me time and I know it helped. As a counselor, I obviously know the value of talking about my feelings but I also know the value of running and its affect my overall mental health. As I was running I could feel my determination to finish 3 miles growing. I felt strong, my legs felt great but I got a horrible cramp around mile 1.5. I didn't stop, I ran through the pain. A great coach once told me that I needed to learn to be comfortable with being uncomfortable. Today was my first attempt. I was uncomfortable, but I was ok. It was a great run and now I feel like I can breath again.

Whew, I a lot to take in.

I had my first ever official Dr.'s visit with a plastic surgeon. It was good and bad. The good was, that I really liked the Dr. He was very nice and took almost an hour to explain everything to me. Surprisingly, I felt super comfortable with him even during my exam. I've done enough research so that I understood what my options were before coming in to the consultation but I still appreciated the full explanation of the process.

From my understanding here is the time line I am looking at:

Surgery 1:
Complete mastectomy (removing all breast tissue but not muscle) by a breast surgeon
immediate reconstruction by the plastic surgeon using temporary expander implants

Out patient procedures: The expanders will need to be filled once a month to "expand" the skin so that there is room for the actual implants. This will take place once a month for 1-2 months.

Surgery 2: 1-2 months after my final expander fill, real implants will be put in. This is an outpatient procedure but time off of work is needed to recover. (time from original surgery 4 months)

Surgery 3: 8 weeks after (or longer if I choose) the plastic surgeon will go back and do nipple reconstruction. Again time off of work is needed. (6 months from my original surgery)

So, adding it up all was a bit overwhelming to me. I am looking at from start to finish at least 7 months of back and forth Dr.'s appointments, outpatient procedures, pain (though minimal at times) and a constant healing process for my body. It is definitely more than I realized when I initially made my decision. I know that it is the best choice for me, but that time is line is if nothing goes wrong. If I have a bump along the road, who knows how long it will be before I can look at myslef in the mirror and be "happy" about what I see.

I still believe that what I've listed is my best option for a healthy lifestyle. I'll be one of the few women in this world who don't worry every year at their mammogram that they will have breast cancer. After a surgeon performs a mastectomy, my chances of getting breast cancer (duh!) are almost zero. Those are stats that I can get behind.

I am not going to lie, I'll put it out there, I am nervous about how I'll be able to handle all of these surgeries, procedures, appointments, pain, etc. AND work a full time job AND raise two children. So many questions are coming up in my mind. For instance, though I may only need 4 weeks off of work for my major surgery how will I take the kids to their daycares if I cannot lift them out of their car seats? (I've heard 6 weeks before full functions come back, lifting, etc.). How do I pick them up and put them in the car each morning? How will I handle working a stressful, demanding job, and then coming home to take care of my two cuties? Will I be able to handle that? Will I be doing a lot a but not doing anything well? Am I expecting too much out of my body? Will I push myself too hard and cause unforseen complications? I dont' know. A lot is going through my mind right now. I am not doubting my decision to do the surgery, but I do have a lot of unknowns about how things will pan out for my family and my ability to give it my all at work and at home. I am sure this isn't the last you all will hear of these concerns. The good part is that I feel very comfortable with this Dr. and though a second opinion is probably a good idea, I am happy that I've at least started the process.

Doing the opposite.

I get the whole "pink" association with breast cancer and how we can show our support but I have the opposite thoughts. I want to be proactive and healthy but I cannot let "pink" define my life. It cannot be all that I think about. It is not, though it is taking up a lot of space in my brain right now (and after two kids I feel I have little space left anyway!). It is harder to stay focused at work and at home when I can be researching, finding doctors, reading message boards, etc. So, my take on this is to: Stay Calm and DON'T think pink (all the time!). I hope that I can take my own advice.

It is a gamble. . .

I had a follow up genetic counseling session today with the counselor and an oncologist. It proved to be very helpful as I had a lot of questions. The more I read and research, the more I feel like I have a handle on my true risks. It seems the initial number given to me applies to BRCA 1 and BRCA 2 carriers combined but since I am BRCA 2 my personal risk for ovarian cancer is about 10%. To top that off, I have no one documented in my family history with ovarian cancer (that we know of). So, that makes me question why a Dr. would even recommend that I have my ovaries removed? Would you remove your leg if you had a 10% chance of getting bone cancer in your leg?!?If you had a 10% chance of winning the lottery would you still play if the price of a ticket were $1000? Probably not. It is all gamble at this point. I get that a lot of women do it for different reasons, if I had seen someone in my family struggle through ovarianc cancer it’ll probably be more of a concern to me. I just feel that if I know my risks are not that high and also a surgical menopause can change the quality of my life and put me at a small increased risk for bone issues and cardiovascular disease then surgical options for my ovaries are not something I am interested in at this time.

The other thing that was mentioned by the Dr. is that my risk of dying from breast cancer is very low. My risk for getting breast cancer is high, but with the surveillance technology available, if I do get cancer it would be caught super early as I’d get monitored every 6 months. I am not going to lie, for a split second I questioned myself and my decision to get a PBM (prophylactic bilateral mastectomy) because what the Dr. said is so true. Most women survive breast cancer and if it is caught early then why let it worry me so much. But, then we got to talking about my mom’s history and we reviewed my file. My mom had her first lump biopsied when she was my age. And for twenty years she has struggled through the stress and anxiety that go along with getting mammograms, biopsies, and waiting for results. In fact, she dreaded it so much she actually missed one year. Most women (even without a genetic risk) dread their yearly mammograms. I am not sure for the next twenty years that I want to be going through that, with finding lumps, having them biopsied, having them removed, and waiting by the phone even if I never got cancer. There is also something to be said for the stress it causes on your children. I do not remember being super worried about my mom through all of her issues but I am not a typical "worrier," I am not able to predict how my children would react to my stress through these issues, though I know for a fact it would stress Dan out immensely. I know my mom was terrified every time the phone rang to hear her results. Though I haven't processed this all the same way my mom has, I can see that being stressful for anyone. My thoughts were, if I most likely will eventually get cancer and at that time, would opt for the mastectomy anyway, why not do it now and save myself the stress and anxiety (not to mention money for the surveillance as my MRI was 300 out of pocket) and go for it now while I am healthy. So, again, thinking logically and rationally, I think I am ok with my decision to move forward.

As far as the ovaries, I’ve decided that I am in absolutely NO rush to take those bad boys out. Do I want more kids? Most likely no,  but I don’t want to be in menopause at age 31 or even 35 or even 40. I am ok with surveillance for at least 10 years. Easier said than done, right? I think I’ll be able to handle the stress of screenings as the ovarian cancer risk is not that high in general and certainly not high in for a person between ages 30-40. I’ll be making an appointment for this summer to begin my surveillance efforts and go from there.

Next stop....the plastic surgeon on Thursday.

Changing things up.

As you probably noticed, the picture I had on my header is of my mom. She is currently battling breast cancer. My sister, Jenn, (http://fybphotography.com/) took the picture of her and the pictures proved to be very inspirational. It gave us all the push to fight even harder, including my mom. I used that picture as my blog header because my mom is the reason why I got tested and why I know what I know. If it weren't for her (though it sucks she has cancer) getting cancer, I would have never even suspected I could be at risk. I would have continued on the same path and probably waited until I was 40 to receive my first mammogram. Thank goodness I know, thanks to my mom and the fight she has ahead of her. She took the news very hard that I was positive but I think she realizes now, that me knowing is so much better than not knowing and going down the same road she is right now. She'll begin a very aggressive round of chemo and then have radiation. I am an adult and it is terribly hard to see your mom struggle through something like that, which is why I cannot allow that to happen to my kids, knowingly. If my mom had the choice years ago, I am sure she'd do the same thing.

 Here are several of the "moments" that my talented sister captured of mom.

Though my mom was the reason I got tested, she isn't the reason I am fighting this and taking drastic measures to prevent cancer, which is why I took down the picture. I've changed focus from digesting the news to taking action. My kids and my husband are the reason that I know I have to take this all seriously and do what I can to prevent it from happening. My family is everything to me. Picking them up from their respective places (school and babysitter) are the highlight of my day. Spending every minute with them is what makes me happy. Dan, Sean, Carter, and I have so much fun. I love everything about my life and I want to keep it that way. Now that I know more about the mastectomy, I've realized it is a lot more than I originally suspected. It is going to be hard, it is going to be painful, and emotionally challenging. But, at this point I don't feel like I have a choice. I have an appointment with the plastic surgeon on Thurs and that will be the first step in this process. Am I scared? Yes. Will I do it anyway? Yes. I'll do it so I can be a mommy and wife to the most important people in my life for a long, long time.

It is not black and white.

Depending on what book you read, who you talk to, or what websites you explore you could be told to avoid quite a bit of things in your life to reduce your risk of cancer. This concept frustrates me and scares me at the same time. For one, I feel like at this point “everything gives you cancer”. For instance, I decided to implement flax seeds into my diet as they are a great source of Omega-3 essential fatty acids, and fiber. So, one would assume these would be a great healthy choice. Wrong. Depending on the site you read or who you talk to, some BRCA previvors avoid this due to the content of estrogen (along with avoiding all soy products). This is exactly what I mean, something that is good for your whole body perhaps isn’t good for one particular type of cancer. WHen you ask your Dr. though they often tell you not to worry about that kind of stuff because it isn't scientifically proven, but yet so many do. The same goes for birth control pills. They are not recommended for BRCA carriers as it is increases your risk of breast cancer, due to the fact that estrogen is linked to breast cancer, but decreases your risk of ovarian. I mean, really?!?!

I guess I am just frustrated as I want it to be black and white. Eat this and you won’t get cancer, take this pill and you won’t get cancer. Wouldn’t life much simpler if that was the case?

Here is what I am changing:

1.    For breakfast everyday I switched from instant oatmeal to steel cut organic oatmeal (and will continue to encourage Sean to eat it though his first encounter was not pleasant)

2.    I am adding flax seed to my daily diet (in the oatmeal). I choose the overall benefits rather than worrying about the estrogen levels. I will speak to my Dr. about this though.

3.   Organic milk all the way. For years we did buy it for Sean but recently due to “budget cuts” in our house we went back to regular. We will use organic only from now on.

4.   I am attempting to buy most fresh fruits and vegetables that are organic.

5.   Switching from plastic storage containers to glass. At least that is an easy one!

Like I’ve posted before I am very active so I do not feel a need to increase my activity level. I am still working on my weight. I’m losing it very slowly this time (post pregnancy), which is ok. 

I’m still struggling with the soda. I’ve switched to diet due to the caloric intake but I really like regular better. (and regular has no artificial sweeteners which is good). Once my weight is more under control then I will stop drinking soda all together, and when I do, have a regular soda in stead of diet. 

If anyone reading this has any suggestions, please share and post a comment. At this point, I feel like the best plan is to provide myself and my family with a healthy lifestyle. That in itself has many benefits besides the reduction of our risks to cancer.

True.