Monday, June 13, 2011

Surreal

So, I haven't written in weeks. Typical me. So overwhelmed with thoughts and emotions that I avoid any form of written expression. Excuses, excuses. During the first week after my last appointment with my plastic surgeon I would open this up, stare at the screen for about 5 minutes, panic, then promptly close my computer thinking that no one wants to read my thoughts, anyway. Plus, I have too much homework to do and work was rough today. This blog can wait. The last couple weeks after that, I avoided this site at all costs. Like I was afraid of it or something.

And I was. 

I avoided my own blog, other people's PBM/BRCA blogs and any form of preventive surgery/breast cancer/implants/surgery education, research, information like the freakin' plague. Picture the little girl in pigtails with her fingers in her ears singing "La la la I can't hear you, la la la I can't hear you!!!" That was my mindset to....all of this. Focus on work, focus on college courses, focus on anything but the fact I am about to cut my breasts off.

But every night when I would change into my pajamas and every morning before every shower....I would stare in the mirror, hold my breasts and do my best to fight off the tears wanting so badly to form in my eyes. I had been so excited about preventive surgery, so empowered! Completely full speed ahead on research and preparation, kicking cancer's butt before it kicks me! And I'm getting bigger, fuller boobies along the way! Now, it felt like I was crumbling. It is such a weird feeling to have peace about a decision, but still have this mournful sense of sadness & fear at the same time. I know this is what I want to do. I just am not sure what to expect, afterwards. That old familiar cliche, fear of the unknown.

Everything is finalized for August 11th.  Two more months to indulge in my pre-previvor, self. It's such a surreal, overwhelmingly terrifying feeling to know that on that day my life changes. What will this change bring? Lower risk of cancer? Of course. But what else?

Technically, it's only my breasts that are being cut out with the 'beginnings' of new boobs put in it's place. But I feel like all of this will be more of a reconstruction of my inner self, who I am in the spirit.. my mind, my soul... *me*. I'm letting go of all my security safety nets that I've learned and grabbing a hold of the biggest challenge I have ever taken on. To me, it feels like I am becoming a true woman through all of this. I still don't know exactly know what makes a woman, a woman. I have always just felt like a Shannon. I feel like this path I am walking down will bring me to a place where I may finally understand.

Tuesday, May 24, 2011

Decisions.. incisions.

It is only Tuesday and this week has already kicked my butt.

The past few days have left me feeling extremely low. Maybe it's my mind processing/dealing with all the changes soon to come. Maybe it's because I'm pms-ing (sure isn't helping!). But maybe, it's because it seems like all I do anymore is put all of my energy into putting out fires at work to keep the office running, to then come home to finish homework assignments for my college on-line courses till 11 o'clock at night. Barely having time to do anything else...and when I do have time I am so mentally exhausted, all I want to do is not think about or do *anything*. Oh, that and sleep. I love my bed so much. My brain just wants to shut down by Friday night. Even getting started on writing a post for this blog feels difficult. Ridiculous, I know.

"Wah. Wah. Wah. Quit yer bitchin." That's what I want to and should be saying to myself right now. Negativity gets you no where. Though sometimes that "boo-boo face" of self pity is inevitable. As long as it is short lived. That being said, I want to say sorry to my boyfriend for being a ':( ' last few days. You always stick by me and try to help even when I'm being butthead. I love you <3X

The main point of this blog was to talk about my p.s. dr appointment this Thursday. Though they said I didn't need to come back until my pre-op appointment, I decided I wanted to go back to discuss a little more in depth about implant type, size, shape, choice of incision location, etc. Doing a nipple sparing pbm can have great results from what I have seen, but I have read conflicting information on which location of the incision gives the best chance for tissue survival. As long as the shape/size of the implant has a good cosmetic result and my natural nipple/areola tissue survives the surgery, I don't really care about the size or placement of the scar. A scar is a symbol I will wear proudly. I know the risk of losing my nips is there no matter what. But if a choice of incision location can improve my chances of keeping them, I want to have that knowledge ahead of time.

Another reason I want to meet with him is to discuss how many cc's he will feel comfortable with in concern to my weekly or bi-weekly fills. I seem to read that most women doing 50- 80 cc's at a time, but I would rather push through the pain and do 100-120 cc's at a time to get done quicker. I also wonder if filling at a higher rate like that would be dangerous? I am trying to get all my surgeries done by December 31st so I don't have to pay another deductible for the second surgery. *Crosses fingers*

So, my appointment will hopefully answer questions and give me a little more peace about the surgery.

To end this on a positive-

1. Wicked is coming to Atlanta! Finally! :D It isn't until September and I will probably still be somewhat medicated and healing... but I am totally having someone take me!!

2. I found some really tasty gummi bear multi-vitamins yesterday. haha. I am a horrible pill taker.






 

Thursday, May 19, 2011

Lists, Sushi & Theme Music.

Today I was thinking about how everyone should have their own theme music. My family calls me the human juke box because every day moments seem to always remind me of a song. Anyone having a bad day should totally sing and dance while they walk down their hall to the bedroom, cook their dinner, shower, anything! Just do it. You will instantly feel better. ;) I recommend taking songs and singing them 'blues style' instead.

Speaking of theme music. Doogie Howser had his own theme music for his 'end of show' blog he that he wrote each episode. Does anyone even remember that show?  He was pretty much the first well known "blogger". Of course, he was also fictional. Ha. :) While I type this, I will be humming that song in my head.

I have been trying to think of things I want to do to before for surgery. The fact that it is only a little over 2 months away makes me feel very unprepared. I have a horrible feeling that the big day is going to sneak up on me before I know it and I won't have anything ready. Working 40+ hours at my crazy job and taking 3 on-line college courses doesn't help that anxiety. Sigh. I cannot wait until June 8th when I will have a break from college classes for a few weeks and can just come home and begin cleaning up and preparing. Oh.... and just coming home to do absolutely *nothing*. :)X 

Anyway, here are some random thoughts of stuff I want to do,  want to have etc. in preparation of my surgery. In no random order....

1. Waxing of all the lady areas. Probably won't be able to shave for awhile and I don't know about you all, but hairy is kinda scary. Not to mention uncomfortable.

2. Facial. Who knew that pumpkin was not only great in the form of pie, but also amazing on your face as well! lol.

3. Make a list of about 25 movies/classic TV shows for Netflix to send me. Howl's Moving Castle will be on the top of that list. :)x That is one of  my and my boyfriend's favorites.

4. Go bowling. I love bowling. I don't go enough and after surgery I will not be able to go for awhile. Plus, on Monday nights it is dollar a game!

5. Buy a new pair of comfy slippers, extra body pillows for my bed for back support and a bunch of button up pajama sets. My mom is so good to me, she already bought me two cute sets.

6. Stop all caffeine intake and increase my fruit & veggie intake. I love my morning coffee, but I want to be as caffeine free as possible, not to mention hydrated and healthy. I also want to go get sushi as much as possible. Of course that has nothing to do with prepping for surgery, it's just because I love sushi and nigiri so freakin much.

7. Get my hair braided the night before surgery. I scheduled this with my wonderful hair stylest today. I am very 'hair'dy-capped" and never learned to braid. :/ I realized I am not going to be able to wash may hair for awhile and I know I won't be able to keep tying my hair back up. There is already nothing worse then trying to sleep and having to continuously retie your hair back up and out of your face. I figured a good tight braid would be beneficial to reduce the feeling of "oily" and also stay up a lot better than a regular ponytail.

8. Go see the final Harry Potter movie. :)

9. Get my game plan together for my job while I am gone. I will be taking 8 weeks off of work and as acting Office Manager in an already short-handed office in the midst of a hiring freeze, there is really no one to cover my position as this time. I want to put together a step by step plan of what needs to be done and when so that my Director can find appropriate coverage. I am very, very worried about leaving for this long of time and do not want to burden anyone else while I am out, nor do I want to come back to a disaster! This will be the hardest part for me I think. Letting go and only focusing on healing....not on work. The work will always be there.

10. Practice breathing exercises to strengthen my lungs and make more time to go walking/jogging. The more I think about being under anesthesia, the more nervous I get. I have been under before, but only for about 30 minutes. I keep reading that sometimes people have trouble breathing when they wake up after being under for more than an hour or two.

It's kind of a silly list...but it's all things I have thought about the last week. I am kind of crazy about having a list for things, even if I don't end up utilizing it. Something about just making the list calms my anxiety. I am going to look around at other blogs and see what other women did to prepare. The FORCE Breast Reconstruction Guide has a month, week, and night before check list. For anyone reading this planning on surgery, you can buy it at this link: http://www.breastrecon.com/id18.html I have a feeling that that section on planning/prep will be very beneficial as I get closer..

Now I can relax and finish off the night with a big glass of water and a good night's sleep......and maybe some popcorn. Yum. I have been coming home every night this week and working on homework until 11 o'clock and night. I'm pooped!

Monday, May 16, 2011

Here we go....Probably the longest post I do.

I am probably one of the world's worst bloggers.

I apologize to anyone reading this for all the long rambles, the bad spelling and the really scattered thought process I have. After reading other BRCA1 and 2 survivor's/ previvor's personal blogs though, I decided to begin "writing down" my own journey. I hope to be able to update how I am feeling from week to week... and if I'm lucky maybe even from day to day. This first blog is a really long ramble about why I am choosing to have a nipple sparing mastectomy and breast reconstruction. I am assuming that anyone reading this already knows about BRCA1 and 2. This isn't so much of an informative blog, as it is a way to vent and possibly connect with other people in my boat.

My name is Shannon, I am 28 years old, pretty goofy and BRCA 2 Positive. Growing up I always knew that cancer ran in our family, but I never really thought twice about it. My maternal great grandmother died of ovarian cancer, but I never met her so it didn't affect me. My maternal grandfather died from prostate cancer, I was maybe 3 when he passed away. My aunt whom I had only met once or twice when I very young had breast cancer in both breasts at different times in her 50's and 60s, eventually passing away from the second battle. My maternal grandmother battled fallopian tube cancer in the 1980's, they gave her months to live but she survived to later die of a stroke when I was 15. Sadly, I never got a chance to truly bond with her, with us living so far away and only visiting once a year.

Though I understood cancer, it had yet to hit close enough to home to truly shake me. Let alone think I would ever be at risk.

Then in 2005, my mom was diagnosed with breast cancer. They initially told her the mammogram showed a complex cyst in the upper left region near the muscle wall of her breast.  They said it was nothing and  " to just come back in 6 months" Thank God my mom listened to her primary care physician and got a second opinion. Due to her family history, they opted to do a biopsy. They said: "It's just a precaution, complex cysts are rarely cancerous...it's only about a 1% chance that you would come back with a malignancy".

The results came back malignant. Triple Negative. My mom was 55. The thought of her never getting a second opinion, going home, trusting the initial diagnosis to come back in 6 months. It makes me sick to think about it. After the diagnosis, my mom was tested for genetic mutations and tested BRCA2 positive.The lumpectomy she initially thought she would have, became a double mastectomy and hysterectomy. Luckily, surgery and 6 weeks of chemo saved her life. She has been in remission every since <3.

Anyway, this caused a ripple effect in our family. My uncle was diagnosed with prostate cancer before 2005 and decided to get tested as well after my mom's results and he tested positive. Sadly, he will probably be passing away soon after fighting for over 7 years. He was the only member of my mother's family that I ever truly got to know well.  My big sister decided to get tested in 2006 and came back positive as well. After 2 years of "false positive" testing she had a simple PBM in 2008 with breast and nipple reconstruction. Part of me, even after everything I knew, still thought she was crazy to do this. She was only 30! :/ Cancer effects old people. That was that.

I decided to get tested in 2008. I literally went into it thinking "Ohhh I look and act like my dad, I'll be negative." Why I chose to go down this road of ridiculous logic, I have no idea. Apparently I can be somewhat of an idiot at times. When I got my results, I couldn't breathe. The genetic counselor kept saying how sorry she was. Like I was doomed... like I already had something wrong with me. She explained that with this mutation and my family history it put me at extreme risk and referred me to a breast specialist. Though the news shook me, I still kept my denial going... "Whatever....I'm 26! Psssh."

But my breast specialist said the same things. She explained that age wasn't a factor. That cancer in high risk patients, especially BRCA1 and 2 could hit any age. And it is normally an aggressive form. That I was guilty until proven innocent in her eyes. Being high-risk was serious business.
She said with my breasts I had 2 options: extreme surveillance every 6 months pretty much forever until I probably get cancer. Or preventive surgery.  With my ovaries: preventive testing until I'm 40 and then they have to come out. She looked at me point blank and said that most of the time we can catch breast cancer with heavy survellience to give you a good chance of survival. But with your ovaries... it's just so hard to catch it in it's early stages in time to have a high survival rate...and your risk is just too high after 40 to keep them. They are like ticking time bombs.

I cried a lot over the next couple weeks. It was all so confusing. I was a healthy young girl, finally beginning to love my body, in a new relationship... only to be told my breasts and ovaries would probably betray me, at any age...maybe next year, in 5 years, when I'm 50. Who knows? So c'mon Shannon, let's make some life changing decisions!  Do you ever want to breast feed? Do you want kids? Will you ever get married? Would you still want kids even if you don't get married? Can you handle losing your breasts? Fake boobs!?  Early menopause?! Really?? Ugh....No pressure though!!

I planned on doing preventive surveillance forever. I'm young. "You can't have my boobs and baby makers!!" was my motto! "Screw THAT" I said!

This was how 2008 to 2011 went:
I would avoid thinking about any of it at all costs, until it was time to do preventive testing. Then I would sit around in an emotional panic, rambling on and on to my boyfriend, my family etc. about what I'd do if I got cancer. Crying thinking about it. I'd get called back in for every little thing. "We need to do another ultrasound." Very. Emotionally. Draining. The medical bills, having to pay hundreds to thousands of dollars each year with insurance premiums and deductibles constantly going up didn't help the situation either.

Then I had to get a biopsy last fall. That was a horrible month. Even though the biopsy came back benign as a fibroadenoma, it changed my thinking. "Could I put myself through this potentially ever 6 months, forever, until the big C gets me?" "Could I afford spending this kind of money forever?"  The answers all started to lean towards a big fat  hell no.

So, in January I started doing serious research and talking with my family. My boyfriend has been supportive from the very beginning. He has said from the get go of our relationship that he loves me and just wants me to be okay. He's with me through it all. My family all feel the same way. So after meeting with several plastic surgeons and  researching the different types of mastectomy surgeries over the last 4-5 months, I scheduled a nipple sparing PBM with tissue expansion for August 2011. I plan continuing surveillance with my ovaries until at least 35, and seeing where I am at then.

Every day since I have finalized it all I have had different emotions. I am just so ready to move forward so I can find closure and learn to love my new body and rejoice in the fact that my life won't revolve around this stupid mutation. I will beat cancer before it has a chance to beat me. An who knows, maybe I'll get the cleavage I always wished I could have, ha ha. :)


Again I apologize for my poor writing skills. I hope that if anything, I can help others by posting my emotions on BRCA2  and later on posting pictures along with a day to day healing log from my surgery.

:)X