FORCE

When I found out that I was BRCA positive a close friend recommended FORCE, which is an organization which supports those with the BRCA gene and helps to fight hereditary breast and ovarian cancer. I joined the site a while back and have jumped into the message boards. I've also started this blog and gotten hooked up with a lot of other women just like me. FORCE has a local chapter here and I was able to attend the support group last night. It was great! I had emailed with a couple of the women but it was nice to see them face to face. It was great to hear their perspectives as they are further along on this journey than I am. Of course I enjoyed a support group...what kind of counselor would I be if I didn't practice what I preach :o)

If you haven't checked out FORCE and you are BRCA positive or have a strong family history, you should definitely visit the site: http://www.facingourrisk.org/. Being involved in the website and the the message board have been super helpful to me along this process. There is something to be said for the "you are not alone" factor. FORCE helps you realize that very quickly.

I have to remind myself of this.

You may not end up where you thought you were going but you will always end up where you were meant to be. -anonymous

Waiting. . .

So, my surgery is "penciled" in for August 22nd. The problem is it is already difficult to coordinate with multiple surgeons but add summer vacations to the mix, and it is hard to figure out! The doctor I chose is going on vacation sometime in August but he hasn't decided when. So the secretary has been talking with his wife to try to get it figured out. Lets hope the plastic surgeon isn't going on vacation too. I mean, I am personally going on 3 vacations this summer so I can't blame them. But, either way, I want to know the date and be done with the stressful decision making process. The decision is made and now I can move on and focus on my family, work, and getting into kick butt shape. Now, I am just waiting for the secretary to call me back and let me know the final decision on a date. Fingers crossed for August 22nd! It works great with our schedule.

How ironic is it that every since I posted those Tri picks I have been thinking about getting out my bike from the attic. I think I need to get back on the road. After looking at the summer schedule and seeing my vacations and the fact that my favorite Tri has moved to September it doesn't seem like a Tri this season is in the cards. That is ok, I am sure I'll be back at it next summer! What better reason does a girl have to miss the usual triathlons besides being on three awesome vacations!?! One to the mountains with the Bliss gang, one to OBX with the Rettig Gang and one to Kure Beach with our close friends. I will have surgery 3 days after returning from vacation #3. Talk about a way to keep my mind off the impending surgery. Lay on the beach with 8 close friends and 8 (yes, I said 8) super cute kids! Sounds like a great plan!

This pic was taken the summer of 2010 the last time we went to the beach with our close friends. It was 8 adults and only 5 kids. We've multiplied! Looking forward to another great summer especially now that we have a great family of four!

My decision.

I have made my decision. I have decided on Dr. #3 and the corresponding plastic surgeon. Whew. At least I can mark that off the list. It turns out that Dr #2 and her plastic surgeon operate a hospital that my insurance no longer supports. I think they are in the process of negotiating a contract and we received a letter stating that hospital was no longer an option for me. I am not willing to wait it out to see if the negotiations change things. So, that helped to make my decision even easier. I wanted to use Dr. #3 anyway so one less thing to worry about!

I've called to schedule the surgery...gasp! I've given my requested timeline and so we'll see what the actual date turns out to be. Now, I can take the next month to enjoy my afternoons without rushing off to Dr.'s appointments once a week!

Breast Surgeon #3

Ok, this was my last "interview" with a breast surgeon and it was a good one. I feel like I am "shopping" for a Dr. and I am spending as much money as I would but not getting any new clothes out of the deal! Despite waiting for an hour (at least I had my lap top and could get some work done while I was waiting) it was a great appointment. Because I am already a patient at this office I feel very comfortable there. The receptionist even remembers me from all of my breast feeding infections (course I was there 4 times in two weeks so that helps). The nurse practitioner is the one who did my genetic testing and the nurse I had today was super sweet and helpful. The office is located literally *right* across the street from my school, I could walk across the faster than I can walk to my car and drive there. All that being said, I just genuinely liked him a lot. I felt very comfortable talking with him and he answered all (I always have a lot!) of my questions. He even commented on how well educated I seem to be on the topic and was glad that I asked so many questions.

He didn't have a strong opinion about nipple sparing or not. He said, he sees why the other Dr. would have concerns but if I felt strongly about it then we would go along with what I preferred. Apparently, the plastic surgeon who works with #2 is all about nipple sparing which is probably why that Dr. suggested it. I think I am going to go ahead and start from scratch with that. Being that I've already had a breast surgery and my nipples already have been surgically altered, I think it is best not to take a risk of them having issues because of that.

The other thing that I like about this Dr is that he operates at St. Mary's which is where I had my first child. I had a great experience at that hospital and would be happy to go back there. The other Dr.'s operate at two different hospitals that are no where near me and I have no experience at. Just one more thing to consider. It sounds like he'll be on vacation the week that I was hoping to have surgery so that is a consideration but I am a little flexible about the time frame. He also only does breast surgery and mostly deals with breast cancer mastectomies, lumps, biopsies, etc. He said he does a prophylactic mastectomy (sometimes just one side is prophylactic) mastectomy 1 to 2 times a week!

Overall, I am strongly leaning towards this Dr. and the plastic surgeon that I've met with already. With all the other appointments I had a nervous feeling. With these two, I just didn't have that nervous feeling. Even though I was meeting them both for the first time, I felt at ease. I guess at this point my gut is the way to go. All the Dr.'s I've interviewed are excellent and have great reputations in the area. I think that I am able to be a little picky and look at other factors, like location, office feel, and my level of comfort with each Dr. in addition to their surgical skills and reputations. When I mention his name to anyone that asks I get, "Oh, I love him," or, "my mom had him years ago," or, "I've heard he has a great reputation". I like what I hear when I mention his name. On a side note, he trained Dr .#2 and then she went to a new office. So, technically, his level of experience is a huge plus!

I am happy that I am close to making a decision. I am on the fence as to whether I should even go to the plastic surgery appointment that I have scheduled. Dr #3 can work with her but she works the best with Dr. #2 and I didn't like her as much as Dr. #3. I guess I have a week or so to decide. My appointment is in two weeks and I could easily cancel it, let Dr. #3 I was on board, and get this surgery on the calendar!

I am strong, physically.

As I mentioned before due to my weight lifting routine I feel really physically strong right now. I am glad as it is paired with a not so strong emotional side. For the past 1.5 years (9 months of those being pregnant-yes I was that girl with the big old belly doing body pump) I have been pretty dedicated about going to body pump 2 times a week. Body Pump is a choreographed weight lifting class that takes you through your whole body in 1 hour. After your first class your *whole* body hurts. It hurts to walk, move, sleep, eat. Anyway, I am way past that point and have been increasing my weights and moving up in the program. It makes me proud that one part of my exercise routine is super successful right now (the running is coming along, also). I don't know but its weird to me that there is this fused connection between body pump and my BRCA fate. Is that weird? I mean I did find out that I was positive 1 minute before attending a body pump class. The first hour of my life as a BRCA carrier (a known one that is) was spent pumping iron. I didn't cry I busted my butt in class. I often find my mind wandering during class to BRCA. As a mom of two I don't get too much time to think alone at home. So, while I am at the gym I am pumping my muscles but also pumping myself up. I think about how strong I am and how strong I will be when I have surgery. I see how my body is physically improving and how it will continue to improve before my surgery. I really do want to be at the peak of my physical condition before I do this surgery. It may seem silly as it'll just get all torn up again and I'll be starting over...but it is my mind set right now. I don't know but I feel really great during body pump class and it helps that I get that burst of strength and reassurance to myself each week. I guess if I can make my body physically strong then the rest of me has to follow, right?

For those of you who know me well you might be wondering...what happened to the triathlon training? The answer is...I don't know. My bike that is stashed in the attic is literally dusty from lack of use while I was pregnant. Having the two kids and a lack of options for what to do with them while I bike, it seems it has taken a back burner. I won't make any final decisions and if an opportunity arises I'll take it to get back on the road with my bike. Until then, I'll keep doing what I am doing because clearly it is helping me in more ways than one.

Why August?

I made a list of reasons for and and against having the surgery in August, rather than November. Here are my pros and cons.

 Pros
1. Dan won't need to take off as much time as we'll both be on summer break and what he does take off will be teacher workdays. Not having to do sub plans make it much easier for him to take days off.
2. We won't need to worry about transitioning Carter/Sean back to daycare and then taking them out for a month or so and then re-transitioning them. They will just not go back to daycare after summer break until I go back to work post surgery. My family will be taking turns staying with us and so they'll handle the kids while I am recovering.
3. Dan coaches in the winter/spring seasons and when I go back to work after surgery I think it is wise to have him around from 4pm vs. 6pm, as I'll be exhausted from working all day. I've heard it is MONTHS and months before you feel back to your normal self. It has something to do with your muscles re-generating and the overall healing process.
4. It puts me out of work for only a few actually weeks of school and surprisingly it isn't a horrible time for me to miss as my counseling stuff like lessons and group/individual sessions don't really begin until October. A sub can easily fill in for me given what my focus is in September.
5. I'll just be returning from the beach and I can have one last boob-cation. ha ha JK on the last one

Con's
1. My mom most likely won't be able to come visit me after surgery :o( She'll be doing radiation at that time.
2. I won't be able to "hide" in winter clothes, big sweaters, etc.
3. I'll be laid up after surgery for my baby girl's first Bday :o( :o(

There isn't a magic answer or a "perfect" time to do this.  I just think my pros list for August is much bigger! Since I am months away, I hope that this will be do-able with the surgeon's schedule. First, I have to choose one!

I'll come home from our third summer vacation (with my hopefully by then rocking post birthing two children bod) and get a boob upgrade. Fabulous...right?

If only it were that simple.

My groove.

So as my best friend from college pointed out in one of her comments (Thanks Col) it appears "Stella got her groove back". I had a great run today with my favorite running buddy. It was the usual 3 mile route that we've done for years together after school. Until now, I hadn't made it the whole way without stopping (cramp, knee pain, etc.) Today, I did it! It was hot, like 85-weird I know,  and I got a cramp. I ran through it. I finished. I was proud. I was happy that I didn't stop. I think physically I am the strongest I've been in years. My weight lifting routine is great. I am moving up on the weights and I can see changes in my body. The running was my weak point and now I know that I am on the right track. I know that before my surgery that I will be at the peak of my physical condition. I will be strong, I will be a great runner again, and I will be ready.

In general this week has been much better as far as the emotions go. So yes, it seems that I got my groove back. Finally.

I stole the pic from another blogger friend.

Breast Surgeon #2

I had another good appointment with another great Dr. I liked him, but I wasn't blown away enough with him to make me choose him, necessarily. He works through VCU (GO RAMS!!) and the medical school at the hospital downtown. It is not my first choice to be a a teaching hospital nor is it my first choice to be downtown at the public hospital. It is difficult to get to, far from my house, and so I am not really going to pursue that route further. I also didn't like the "hospital" feel of the satellite office. Though it was close to my house and the nurse was super sweet it just felt weird to me, compared to the other two offices. He has several plastic surgeons he works with but since choosing him is not likely I am not going to go through another round of appointments.

The one good thing that came of it was that he said because of my previous breast reduction that (TMI ALERT) nipple sparing surgery (saving the nipple and removing all of other breast tissue) was not really a good idea because there is already a risk of the tissue dying and needing to be removed but with my history I am at increased risk.

Now, I just had another appointment on Monday and that Dr. knew about my reduction and said nipple sparing was the way to go. Hmmm....so now different Dr.'s are telling me different things. I guess that is no surprise there.

On Monday, I am on the to final Dr. which is located in the office that I'm already a patient in, due to breast feeding infections, and also the office that completed my genetic testing. The nurse practitioner
there has been super helpful to me all along this process, is very involved in the breast cancer community, and even helped me set up some of my other consults with different surgeons. I've also met with the corresponding plastic surgeon already and really had a great experience (see previous post). I called to make an appointment with the plastic surgeon that goes with surgeon #1 and it seemed she is pretty popular so I am not sure how that affects this process and my ability to get an appointment soon and have the surgery in August. We'll see. Lots to think about! I am choosing between the female Dr. located far away with the super busy plastic surgeon or the male dr. very close to my house with the plastic surgeon whom I had a good appointment with. Sounds like I am on the right track!

Breast Surgeon #1

I feel like I need a personal secretary to keep up with my scheduled appointments! At this point, I have chosen to consult with 3 of the top breast surgeon's in Richmond for my mastectomy. I also have to meet with their corresponding plastic surgeons as each one prefers to work with a different plastic surgeon. So, you can imagine how busy I am with Dr.'s appointments right now! Unfortunately, some are during the day, so yet again, I am taking more leave without pay at work. I do think finding the best surgeons for me is important so I'll put the other stuff aside and forge on. All three of the Dr.'s I've chosen to meet with were either recommended to me from friends or the genetic counselor.

The first surgeon I met with is a breast surgeon who works mostly with breast cancer patients. Her office specializes in breast issues so she obviously has a lot of experience. She seemed really nice and took a lot of time to work with me and answer my questions (I had a list of about 20!). I got a good feel about her and the office was super nice and brand new (not that I am using that as a factor). The location is not ideal as it is about 25 minutes from my house. Also the hospital she operates at is 30 minutes away, though a super nice hospital. She gave me a great plastic surgeon she works well with and so I need to now get an appointment with her. Apparently she is a busy plastic surgeon, which seems like a good thing, so I hope I can get an appointment soon. I am still months and months away from actually having the surgery so I feel I have some time to "shop around". She claimed that my comfort level with the plastic surgeon was most important as they are responsible for the cosmetics of how I will look for the rest of my life. The breast surgeon does have an important role though, they need to get as much breast tissue out as possible so I want someone with experience in that area.

Today I am off to a Dr. who works at the VCU Massey Cancer Center and I am sure he'll have a plastic surgeon that he works with. I've already met with one plastic surgeon so we mark that one off the list. I think the reason I feel so overwhelmed is because I am in the really scary part of the process....the decision making process. I am making life altering decisions. 1. to have the surgery at all 2. What doctor to use and 3. When to have the surgery. I have to say that #2 and #3 are stressful. There is never really a great time to rip apart your body and have someone piece you back together so we are just choosing the best time for our family, work, etc.

As of now, we (Dan and I) think that Mid-August after returning from our third beach trip (we are beach people!) but before Dan goes back to work would be best. Since it is so far out it seems most Dr.'s schedules are flexible and so that shouldn't be a problem. More to come after my appointment Surgeon #2.

Emotional.

I find myself being super emotional right now. Things that normally would not bother me are pushing me over the edge. I feel like on most days I could cry at any minute. I do not like this feeling but I understand why I am feeling this way. I am not worried, but more overwhelmed. I think that I need to take my own advice that I tell my students, and that the only thing that makes things easier is time. I just found out about my BRCA fate not even two months ago. I am not sure why I am expecting myself not to let it bother me. Of course it is going to bother me, it is life altering news. Like I said before, my entire life is forever changed from this day forward. I don't mean that in a bad way, but either way I am heading down a different path than I originally thought I was. I need to take a step back and stop being so hard on myself. Crying is ok and I need to stop feeling bad for letting myself get emotional (though it has shown up in some inopportune times). I just need some more time, and then it'll be easier, right?

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.