I'm more than my boobs!

I was talking with my cousin today, about the kind of grieving process I'm going through with this, and I commented something about boobs being a part of my identity.  and she told me, "you are more than your boobs".   (sorry if this was not the exact quote.. this is the quote in my memory right now and it works)  And yes.  When you look at it that way.. I am!    Boobs are great and all... and I love mine, but there are definitely more important things, not just in life in general, but about me as a person!  It's not like I'm losing my feet, or my hands, or my eyes, or my LIFE.   Seriously, I'm back on the band wagon!    Just 33 more days to go...

Roller Coaster

Today was kind of rough for me mentally.  I was heating up my leftover breakfast burrito for lunch in the microwave at work, when suddenly I had this vision of the mastectomy animation I watched on YouTube.  It wasn't graphic or anything, but the idea of them basically cutting my breast in half, taking out the insides and putting in foreign stuff (the alloderm and expander) only to have to do it again to get the actual implant... ugh. 

It seemed so unreal that I was actually going to do that.  Then I had visions of the scars and stitched up incisions across my chest in place of breasts, and it was just too much to fathom.  No way was I actually doing this!  I had to settle down a bit... "Calm down Amanda, you're just freaking out... get the food out of the microwave and get back to work".  (I said this in my head.. not out loud). 

So I did okay at pushing out the thoughts the rest of the day.  I was super busy at work.  There was enough drama today without bringing my boobs into it!

Then on the way home I couldn't stop thinking about it again.  Felt like some weird stages of grief or something.. I was thinking am I in denial?  Is this the disbelief stage?  I had to remind myself, I'm doing this to avoid cancer.  I started feeling nauseous.  There were the 2 sides of me having this conversation

"You saw those women at the meeting, some of them had cancer and they're doing fine now!"

"Ya, but they still had to have mastectomies and weren't able to do immediate reconstruction and had to go through chemo!"

"Ya, but they didn't know about the mutation before hand, you do, you can find it earlier!"

"Maybe I can!  But maybe I won't!"

"Maybe you won't get cancer at all!!"

"But maybe I will, PROBABLY I will, and maybe I won't find it early enough, and maybe I don't want to be afraid all the time!"

Again, this is in my head - not out loud.  (no need to lock me up yet).

I'm scared now.  I'm afraid of the scars.  I also really for the first time considered what if they find cancer in the surgery.  I've acknowledged it as a possibility, but I hadn't *really* thought about it.  What if they find out I have cancer, and I can't keep my nipples, or worse I wake up without the expanders!   What if after the surgery I go to bed every night and wake up horrified at my scars and that this wasn't some crazy dream. 

I'm having a hard time with the bigger picture right now even though I KNOW - I'm potentially saving my life.  This is the right thing...  I'm sure I'll think so again tomorrow. (hopefully I think so the day after surgery).  

Oy... 36 more days of this roller coaster!  No wonder I'm nauseous.  Get me off this ride!! 

1st Support Group Meeting.

Wow.  Just  now as I sat down here to write this post, and had to figure out a title, I realized I have never, before today, been a part of a support group and now I am.  I suppose most people haven't belonged to support groups.   But it is nice to be around and talk to other people that can relate to what you're going through and what you're facing.

Today was the first Boise meeting for the local FORCE group.  Reminder: FORCE stands for "Facing Our Risk of Cancer Empowered."  which is an organization aimed at woman with a BRCA mutation or  other high risk factors.  Check it out here : http://www.facingourrisk.org/   They developed the word "Previvor".   They have an annual conference in florida where hundreds of women get togther and have seminars and networking functions.  I've frequently read and occasionally post on the message boards.  I was excited when I learned that a group had been developed locally.  I read about these meetings and groups in other parts of the country and wished I had something like here.

There were about 12 people plus the 2 coordinators, all women.  There were a diverse selection of women.  Seemed a fairly good range of ages.  The majority have tested positive for a BRCA mutation.  A couple hadn't tested yet but had a strong family history of breast or ovarian cancer.  Some were survivors who have already had cancer, some of the previvors had already had a mastectomy, a couple hadn't yet (but were planning to).One neat thing is that you don't necessarily have to be a survivor or previvor to go to these meetings, you can go as a supporter, like someone who has someone close to them who is going through this, such as a woman who was at the meeting today who has a BRCA+ neighbor as well as people in her husbands family with a BRCA mutation.

The agenda was mostly about introductions, meeting eachother, and finding out "what brought us here".  The coordinators were really sweet.  They had decorated in pink and teal, pink and teal plates, and napkins, and ribbons and even m&ms.  They had door prizes - a basket of goodies and pink flowers (roses bushes?).  Sandwiches for lunch and chocolate chip cookies with m&ms (pink and teal).    The next meeting will be sometime in November, and they're planning to have like a "movie night" where they'll screen a popular documentary on the subject (which I've been wanting to watch!).  So that will be cool.

I'm really looking forward to future meetings and getting to know these women better!  Yay for support groups!

Nervous

Ah!  41 days away!!  I'm getting nervous about time.

I have all but one of my pre-op appointments set.  I have my MRI on the 14th, my plastic surgeon pre-op on the 19th, breast surgeon pre-op on the 22nd.  Hospital Pre-op on the 26th....  I'll likely have an appointment on the 3rd for injections (for the tracing for the sentinel node biopsy), then the surgery on the 4th! 

My older daughter is back from her summer with her dad.  I'm so happy to see her.  2 months is too long!!  But that means summer is over.  She starts school in 2 days. 

I'm going to Denver in a week and a half and I'm so excited, but I'm guessing the way time flies it will be like stepping off the plane and getting right back on it, 2 weeks from now when I'm back at work after the visit.  Oy. 

Then work - I feel like I was really going to be prepared, give enough notice, work enough to get things totally in line so it would be smooth flowing while I'm gone.  I'm feeling like things aren't working in my favor in that area.  I really don't want to worry about work while I'm recovering!!  I'm not going to lie.. I *would* like to know what is going on.. but I really want what is going on to be good and not stressful. 

Thoughts - 44 days away.

The other day my husband and I were discussing fear of dying.  He was saying he's not afraid to die.   I found myself thinking that day, that I am afraid to die.  Not just because I worry about others, but because I want to LIVE.  I'm just not ready to stop.    This line of thinking made me feel like perhaps I was selfish in my desire to live.   But as I read another blog today describing a woman remembering losing her mother to breast cancer -  I realize that it's not entirely selfish.  I don't want my daughters to experience that,  It makes me cry to think of a daughter losing her mother.  I am so thankful to have had mine all my life.  I can't imagine the pain of losing her to something like that.  I feel like a mothers love can be so powerful, so fierce.  Just as i can't imagine losing my daughter, I don't want my mom to lose hers either.  My mom told me she wished she could do this for me, so I wouldn't have to.  I know exactly what that feels like.  I feel the same way about my daughters, I wish I could do this three times over if it could prevent them from having to face this.  But for now it's enough that It will keep me alive, so I can be here for them, and for my mom, and just live.

Telling People

As this situation has progressed I've needed to inform various people of certain aspects of everything.  Its been easiest to talk to the people closest to me - I've kept them informed the entire time.  From the time I said, I'm going to get the genetic test done, I've been updating these people - my parents, my husband, my sister, my cousin, and a couple friends.  So as something new develops it's just a little update I need to provide - no big deal.

But recently I've had to tell people who have not been part of this journey to date, such as my daughters grandmother, I've mentioned this situation a few times in previous blogs, but I finally got together with her and explained it all.  Luckily (?) when you say "let's go to lunch sometime, theres something I need to talk to you about" that something comes out a little more naturally than it would just randomly out of the blue dropping it on someone.  It was still difficult, and I realized I had to provide alot of the filler information to get from point A to point B.  I can't just say I'm BRCA2 positive so I'm having a mastectomy. 

I also experimented (not intentionally) with just dropping it on someone when I told a not so close coworker at our weekly meeting.  I'm not sure why I told him, he's the head of another department, and our departments rely heavily on one another.  If he was my supervisor I definitely would have told him, and honestly I needed to tell him I was going to be gone for an extended period of time, he's shared alot of his own medical things with me, anyway, I started out saying I will be gone from the beginning of October through the middle of November, and of course he looks confused, so I tell him it's a medical thing. Then he looks concerned, and I've already learned that I don't want people to think I have cancer when I don't, plus I know what curiousity is like, and I kind of feel like telling everyone so that while I'm gone they're not gossiping and when I get back they're not staring at me trying to figure it out.  so I just told him, "I have a genetic thing that has increased my risk of breast cancer to 84% so I'm having preventative surgery."  We exchanged some fairly awkward dialog on the subject, and then went back to what we were meeting about to begin with. 

It becomes easier and easier to discuss.  I think sometimes people expect me to be emotional and display my fear, and maybe cry a little bit.  I wonder if when I don't, they think I have blinders on to what will happen, or that I don't understand the magnitude of what I'm going to do to my body, or what it means for my future.  But it's like anything else I've dealt with really... You can't live in that state constantly.  I am (sometimes) scared.  I do (sometimes) cry.  It's honestly enough that it occupies my mind the way it does, I can't allow it to also have me in a constant emotional state.  I just don't think one can function properly like that, and while all this is going on, I still have a job to do and family that depend on me to be sane.

Reading



http://www.jessicaqueller.com/



I read a book called "Pretty is What Changes" by Jessica Queller.  It was eye opening, and really helped to confirm I was making the right decision. 

I know it probably sounds like I'm constantly seeking this confirmation... but I am.  I really do sometimes step back and think "what am I doing?  This is crazy"  But then reading this story of this woman watching her mother deal with ovarian cancer after a battle with breast cancer and dealing with her BRCA mutation, really helped to solidify it.  I don't want to go through that.  I don't want my children to watch me go through that.  

I've been blog crazy about this.  There are a number of women going through this same thing that are sharing their stories and experience in this format and I've been reading all I can find.  Then I also found this book (which I bought for the Nook app on my phone).

58 Days to go!

As my countdown clock reminds me, I only have 58 days to go!  I've been reading a blog the last few days of a woman who found out she had cancer and underwent a bilateral mastectomy with expander reconstruction.  Her timeframe was so much smaller than mine.  I have to say I am thankful for the time I have.  On the medical side, the people planning appointments and imaging and procedures all seem to be treating it as though it is still soooo far out there, while I'm here feeling like I'm running out of time to get everything done I need/want to do before doing this!  But I'm so thankful that this is a choice I've made - I was able to choose a time frame that is "ideal" and plan for it!  I'll be as prepared as I ever could be I suppose.  Some people don't have that luxury.  I am blessed.

I also have been arranging with my sister to go to Colorado for labor day weekend and get some relaxing sister time and some much appreciated accupuncture/color puncture treatment.  That will be very nice.  She now lives in the town I lived as a small child, so it will be interesting to see a place from childhood memories from adult eyes.

Things are coming together nicely at work.  HR, my supervisor, and "the boss" are on board with the plan to bring someone in to help out temporarily while I'm gone (and for a few weeks before and after to get up to speed) That will be such a huge relief to not have to worry about what is going on work. 

On Tuesday, I'm going to go to lunch with my older daughter's grandmother (her fathers mother) to tell her about all this.  It's alot to take in I'm sure, and she hasn't been privy to any of it over the last year and half all of this has been developing.  I know she cares about me and I really don't want her feeling that I've kept this away from her, but I really haven't known what to say, afterall, I don't have breast cancer, this has just been a series of decisions I needed to make to get me to where I am now, and I now that I have a plan I feel this is a necessary thing before explaining to my 13 year old daughter what I'm about to do.  I want us adults to have a united/brave front in speaking with her about this or answering questions she's likely to have.