PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Saturday, January 29, 2011

Touched by an Angel?

Several things have happened over the past few days to make me feel a lot better about my upcoming surgery. It reminds me of the story "Why I Wore Lipstick to my Mastectomy" by Geralyn Lucas. if you haven't read the book or seen the movie (it was on Lifetime I believe) then I highly reccommend it. She was in her 20s when she was diagnosed with breast cancer and chose to have a a single mastectomy. She talks about several angels being placed along the way to help solidify her decision to have the surgery as opposed to a lumpectomy. So I feel like as soon as I feel that this whole mess is unbearable, I get my very own angels sent to help me feel better about what's going on.

After work on Friday, I decided to get Lenny's for dinner. As I pulled in, I noticed a small shop next to it that sold t-shirts, jewelry and other accessory type things. I decided to take a look in there before I went to get my dinner. I saw a gorgeous Willow tree like figurine holding a big breast cancer ribbon and it said "A symbol of hope, strength, and survival for all to see" I picked it up and didn't see a price on it. Since I was the only customer in the store, and I saw the clerk watching me with avid interest, I casually asked "How much is this?" "$17" she answered, still looking at me with an inquistive expression on her face. She quickly brought me the box to  it and hesitated for a second. She finally shyly asks "Are you a breast cancer survivor?" Now at this point, I'm sure normal people would have said "No" and left it at that. I'm almost positive that after this post is read by people I'll be told plenty of times that I tell people too much information about myself. But I'm far from normal and I tend to share too much so I said "Actually, I'm having a mastectomy in a few months because of a genetic risk for breast cancer. So to answer your question, no I'm not a survivor but I'm very much affected by this disease" Her eyes grew to  the size of dinner plates and she said "You're having your breasts removed? Before you get cancer?" and I said "Yes, thats exactly right. I've had plenty of doctors tell me that this is what I should do. I may be hard headed and stubborn, but I'm not stupid so I listened." Her inquistive look changed completely to awe and she says "That's so brave. Good luck with everything. You have to come back in after your surgery to let us know you're ok" I thanked her and took my awesome new purchase and left, feeling very good about myself.

Another thing that happened, is that in response to one of my posts on the FORCE website someone mentioned that a victim is not someone who has the courage to do what I'm doing. So I'm not a victim, simple as that. Another person who had read my story used the word amazing to describe me. Now I'm not sure I live up to that adjective, but I've been called that before so there must be something to it, right ? =) Ok that was really a joke but I have been told that I'm amazing, strong, etc when it comes to dealing with medical situations. I've never thought I lived up to that...I just take what's been handed to me and deal with it in the best way possible. But I like that description. I like to think that I'm a strong warrior, not a helpless victim. A few years ago, I got a tattoo on my foot. It's the chinese symbol for strength. I got it after a long debate...I got it to remind myself that I am a strong person. I do have strength...it may be hidden behind anxiety and worry at times. But it's there. I just have to remember to use it.

I've mentioned before one of my favorite quotes "Courage is the art of knowing your the only one who's scared to death" another quote I've heard is "What doesn't kill you doesn't always make you stronger, but helps you to realize the strength you've always had"

I went and got my oil changed in my car recently and they gave me the sticker that says the next date to get an oil change. Mine was 04/29/2011. Then it hit me...that'll be 9 days after my surgery. It's fast approaching, and I can only hope that I can hold on to this new, better attitude as time gets closer.

I know that the anxiety attacks aren't 100% behind me. I know they'll be days where the creep up on me and I have to mentally take the fetal position and cry my eyes out. I'll try to take deep breaths and remember my angels that visited me this weekend. And look at my foot tattoo. And if that doesn't work...I'll have the Xanex close by! =)

Tuesday, January 25, 2011

Bad Day

I don't normally like to blog so close to my last entry BUT today has been such a bad day for me that I feel like I need to. I know I'll feel better once I blog and I also want my blog to be a very honest account of what going through this feels like. The good, the bad, and the ugly :)

Today started out like any other day. I got up at 6 AM and got ready for school. As I driving to school and about to get off of the interstate, I had like a full blown panic attack. I wasn't even THINKING about having surgery or anything else stressful. I didn't hear anything to make me think of having surgery. I just started shaking and crying and I couldnt breathe. I was so freaked by my sudden craziness that I decided to skip class (I was in no position to go) and I pulled off into the Dunkin Donuts parking lot. I sat in the car for about 5 minutes to calm myself down and then went in to get some coffee. (My second choice- I wouldve taken my Xanex but it was at home. I'm definetely keeping it in my purse from now on). After about an hour, I felt calm enough to go to work. At work, I tried hard to be my normal self, but it somehow felt forced. I told a half truth about not going to school- I said I got stuck in traffic on the interstate BUT I didn't mention the attack (I really did get stuck in traffic, which is why I said it was a half truth.) I went to the gym and I felt a little better( working out makes me feel good) but I still felt like it was just on the surface....that on the inside I was still a big ball of  tension. Now that I'm at home it doesn't feel much better.

I think the reality of what my recovery is going to be like finally hit me. And the reality of the fact that it's not that long until I have surgery and have to face being completely dependant on people for a little while. I like to think I'm a strong person and will be able to recover quickly, but the fact of the matter is that I'm going to have to rely on other people, at least for a little while. And that's scary to me.

I've mentioned before in previous posts that I like to think of myself as a strong person. It's really hard for me to admit that I'm vulnerable and I'm not as strong as people think I am. Very scary territory for me. I haven't actually talked to anyone about this...except on the FORCE message board today (LOVE those ladies!) I feel like if I talked to someone about it then I will have to admit that I'm not some strong warrior person. I'm just a normal 27 year old girl who's scared out of her mind!

I know these last few posts have been pretty depressing. I promise my next one will be a happy one!

Sunday, January 23, 2011

THREE MONTHS?!?!

Ok so this sudden thought has struck me....in three months my surgery will be over. I'll be laid up, with a flat chest, drains, and hopefully loads of fun pain meds. That seriously does not seem like that long. When I bravely told the doctor back in November that I wanted to have the surgery in April, it seemed lifetimes away, Now in less than three months I'll be having it. I seriously get light headed just thinking about it.

For those of you who have known me for awhile, you're probably asking yourself why I am so freaked out over this. Being that I have had 12 (I think, I've lost count) surgeries, 4 of which were brain surgeries, you'd think that I'd be a pro at this. Which I guess I am, in a way, because I have the whole routine down pat. But this is different. The one thing that I'm scared of, is having a feeling of profound regret after I wake up. I'm almost terrified of the moment when I realize that my breasts are gone and they're not coming back.

I know beyond a shadow of a doubt that I'm making the right decision about having the suirgery. I'm just nervous...I'm all over the place. I know in the rational part of my brain that I'm making the right decision and my boobs (foobs...love that word!) will look so much better after I'm done. And the worry and stress will be over. Some people who are in the high risk category are fine doing increased surveillance. Not me. I am a big ball of worry every time I had a mammogram or MRI. I honestly cannot handle that amount of stress!

For now, I'm just going to continue to take it one day at a time. I'll try to have as much fun as possible for the next three months, so I'll at least have something good to think about and remember when I am laid up on pain meds :)

Michelle

Tuesday, January 18, 2011

I hate you boobs

I've come to a conclusion today. I hate my boobs. Literally hate them. In fact, I daresay that I have never hated anything as much as I hate them. As I was about to get in the shower today, I happen to turn around and look in the mirror. They were just sitting there, mocking me, like two time bombs that could go off at any second. They're not pretty, at all, they've got scars all over from biopsies and some skin has sunk in where they've removed alot of lumps. I would seriously be thrilled if I never had to look at them again. I feel like a part of my body has betrayed me.Is it normal for my thoughts to be comsumed with breasts all the time? I feel like a 13 year old boy.

One thing that I haven't admitted to anyone is that I'm scared that I'll get cancer before the mastectomy. The doctor has assured me that it's fine to wait until April, but I still am scared deep down. It's one of the many things that worries me about this whole situation. I think I'm worried because I'm not stupid. I know the percentages, risks, etc.

On a brighter note, I think school is going to be ok this trimester. And I've been working really hard in the gym, I went 5 days last week and plan on doing it again this week. I've also given up sodas and eaten pretty good lately. The only bad thing is, I've been sore every day for the past two weeks. Oh well, I'm told it's worth it in the end. I think a big motivation is I want a smaller body so smaller breasts won't look out of proportion.

Now I've come to the part of the night where I ask myself the question ,"Do I go to bed/watch TV/or study?" The sad thing is...it's 9:30! What I told someone tonight is true, I really am 65 inside!


Michelle

Sunday, January 16, 2011

Life goes on?

It really is true...life really does go on. Time's just rolling by and getting closer to April 20. I feel like I'll blink and suddenly it'll be April 20 and time to go to the hospital. I feel so busy between work and school and everything else. Sometimes, someone will talk about something happening, whether it's Easter, a party, a wedding, a vacation etc. and all I can think is "I'll have had my surgery by then!" It's a very scary feeling almost and I wish it didn't feel like this. I get this sick feeling in the pit of my stomach and I kind of withdraw from everything going on around me for awhile. Almost like a turtle pulling into it's shell. Does that make sense? Probably not ha ha.

I almost feel like it's hard to relate to anyone. Like, they have things going on that I can't be apart of because I'll be laid up from surgery. I feel like I'm left out. And I know that's stupid, because I have friends and I know people aren't deliberatly going to cut me off from the outside world. I mean, I will miss some things but it's not like I'll be gone forever.

This has got to be the biggest decision I've ever made. I feel very confident about it, but I still have the weird, panicky anxiety attacks from time to time. I'm told that's normal to have them right up until the surgery date, so I guess I'll just have to deal with my new little friend anxiety until April 20.

All of my life, I've tried not to be selfish. I've always tried to put others before me. Seriously, though right now I'm trying to put myself first. My goal for the next year is to take care of myself first and foremost. Obviously, I'll try not to offend anyone, but I'm just going to be sure that this part of my life I concentrate on putting my needs first. But if I do manage to offend someone, I apologize in advance =)

Right now, I've got dinner on the stove and watching the Golden Globes red carpet. Fun Sunday Night!

Michelle

Thursday, January 13, 2011

No turning back now...

Today started out like any other day. I drug myself out of bed at 6 AM to be able to get to Dunkin Donuts to get coffee before my 8 AM class. I sat through school and then rushed down I-55 to work. Then I get a phone call from my plastic surgeon's office. It was the nurse and she said they just wanted "to touch base" and to remind me that I need to come see Dr. Cooper a few weeks before my surgery...in case I forgot. WHAT?!? How could I possibly forget??? She then giggled and said "Oh I'm sorry that was probably a dumb thing to say. How could you forget?" DUH. We went on to talk about when and what I'd be allowed to do after my surgery. She said I could possibly be ready for my exchange surgery in June. I'm thinking I may want to "fast track" my recon, so I'll be complete with new boobies in time to start the Fall semester at school. I obviously have a lot to discuss with the doctor in March.

Then I got to work and the day was just like any other day until I got another phone call, this time from Dr. King's office (Dr. King is the other surgeon doing my mastectomy). The nurse said that they were beginning to get it pre-certified with the insurance company. They have a letter from my genetic counselor, talking about my genetic condition and citing a prophlaytic bilateral mastectomy is a good option to consider. She also told me that Dr. King himself wrote a letter and she hopes that the insurance company will approve it without anything further needed. She told me that she will keep me informed, but my surgery is definetely on for Wednesday April 20 at 11:30 AM at Methodist Germantown.

At that point I had a mini-panic attack. Now, the surgery isn't something I'm just talking about having "sometime in the spring, in mid-late April" it's ACTUALLY SCHEDULED. I have a time and place. I have two doctors who have me on their schedule for that day. I have an OR booked in the hospital. It's REAL. Their really is no turning back now. I have my to-do list before surgery, my list of supplies I'll need. Hopefully, that will help keep me busy until it's time.

On a brighter note, going to the gym has helped me keep my focus off of the upcoming surgery. I've been 4 times this week...maybe I'll get toned up before I have to lay around the house recovering from surgery.

And I MUST get some studying done tonight :)

Michelle

Monday, January 10, 2011

Setting the Record Straight

So it has come to my attentiom that there is some confusion about my upcoming surgery and why I am having it. Let me start by saying that I am completely open to answer anyone's questions about why I am doing this and what is going to happen. But I will not tolerate being judged for it. I have entirely too much on my mind to worry about people's remarks and criticisms. That being said, let me list some FAQ's (if you will) of this surgery and the reasoning behind it:

Q- Do you have cancer?
A- No, I have not been diagnosed with breast cancer. What I have been diagnosed with, is a genetic mutation that elevates your RISK for breast cancer. I also have several other factors that also elevate your risk for breast cancer. My biological mother has breast cancer, and possibly the BRCA gene mutation as well. I may or may not have other biological family members with breast cancer...I am adopted so my family medical history is a little shaky at best. I also have had two core biopsies come back with "atypia" This is basically "pre-cancer." Having a biopsy result like this, only elevates your risk for developing it later.

Q- Why not get tested for BRCA before you have the surgery?
A- The BRCA gene is a gene that elevates your risk for breast cancer to 87% (It also elevates the ovarian cancer risk, but the percentage escapes me). Not only does the risk get elevated, there is also a 40% risk of reoccurance. I am aware that my biological mother has a genetic condition....whether it is Cowden's syndrome (which I've been diagnosted with) or BRCA I do not know. Since Cowden's syndrome is a major risk factor, the doctor has told me not to worry about getting tested for BRCA right now. He said I have enough on my plate without worrying about this. I always have the option for getting tested later.

Q-You're so young, there's no need to rush into anything. Why not wait a while?
A- Trust me, I am not rushing into ANYTHING. This is a decision that I've taken a year to make. I've had not one,not two, not three but FOUR doctors tell me that this is the right thing to do. As far as waiting awhile, let me answer that with a question. Someone gives you a gun and tells you to start playing Russian Roulette. You've managed to get through so far without the gun going off, but you know that the bullet is in there somewhere and sooner or later you'll be shot. Will you die? Who knows. That's part of the game. Now someone has offered to take the gun away before you get shot. Do you give the gun to them, or do you wait awhile and keep playing?

Q- What's the difference between a mastectomy and a breast augmentation or "boob job?"
A- A breast augmentation is either enhancing or reducing what's already there. You keep your nipples, your skin, your milk ducts, your cells, etc etc. A mastectomy removes EVERYTHING. This is not plastic surgery so I'll have a better self image. This is a life or death situation. This is me, trying to save my life.

Q-You seem so nonchalant about it. I've heard you make jokes. Obviously you don't take this seriously, do you?
A- Yes, I've been known from time to time to crack jokes about what's happening. I'll say things like "I'm going boob shopping" when I go to a PS appointment, or "I'm chopping my girls off" when telling someone about my surgery. Humor is my coping mechanism. Always has been, always will be. Truth of the matter is, I take this VERY seriously.  There isn't a night that goes by that I don't think about this before I drift off to sleep. There isn't a day that goes by when the realization of what I'm doing hits me unexpectandly. But guess what? I've been dealt a very crappy hand. But I'm dealing with it. You go through this and let's see how you react.

That seems to be all I can think of for now. Like I said, if anyone has any questions, feel free to ask. I'm an open book. I do tend to put myself out there and some people don't understand that. But that's who I am, and at this point in my life I'm not going to change. For better or for worse, this is me. Take ir or leave it =)

Michelle

PS Fingers crossed that class is cancelled tomorrow because of the SNOW! =)

Saturday, January 8, 2011

14 Weeks and 3 days

I now officially have 14 weeks and 3 days left until my surgery. I talked to my doctors office yesterday and they told me that the surgery is scheduled for April 20. So that means the countdown has officially begun. 14 weeks and 3 days....that both terrifies and relieves me. Does that make sense? It terrifies me in the sense that ITS ACTUALLY REAL! It's not some made up "What if" situation in my head. This is actually happening. The ball has started rolling and I can't stop it. This is my reality, I am losing my breasts in 14 weeks and 3 days.

On the other hand, it relieves me because there is now an end in sight. Even though the ball has started rolling, I can see the bottom of the hill (I'm so metaphorical for someone who just spent the day at school, but more on that later). So that makes me feel good. It's so weird I have so many conflicting emotions, I really feel like two different people. I looked back at some previous posts and I was thinking "Good Lord I sound like a nut" I literally have to hit submit as soon as I finish typing, or else I'll go back and edit something out. I want this blog to be as truthful about my feelings as possible. One, because it helps me to be able to get my feelings and thoughts out and forces me to put words to them. Two, because maybe someone reading this is considering the same procedure. I want to give as honest as an account as possible.

On a different note, I started back to school Thursday. And I spent all day (well from 10:30-4:15) there today. And yes, today is Saturday. I get to take A&P 2 lecture and lab (anatomy and physiology). back to back. As much as I was dreading it, it didn't suck near as bad as I thought. I actually enjoy the class and the people in it were great and made the whole day fun. So maybe it won't be as traumatic as an experience as I first thought. Although, don't get me wrong I'd much rather not have school on Saturday, but I'm ok with this. =)

Well they are predicting snow tomorrow night. I've heard 3-6 inches and  then I've heard 6-8 inches. But I've lived here my whole life and know that when people get all excited like that, nothing usually happens.

We will see!

Michelle

Thursday, January 6, 2011

Once again, it's time for SCHOOL

So my first day back at school was today. I forgot how hard it was to get up before 6 AM. I've enjoyed sleeping until 6:30 AM every week day! My class that I went to today should be interesting...Spritual Aspects of Care. It will be cool to learn all of the different religions and their beliefs and customs regarding health care. Then, Saturday is  my "fun day." Instead of hanging out and doing what I want to do (Zumba, Shop,  Sleep, etc) I get to be in AP 2 (Anatomy and Physiolgy 2) from 10:15-4 pm. AHHHH!!!! But I will survive :)

One thing that is CONSTANTLY on my mind now is the fact that April is not that far away. As I was sitting in class today, I was thinking that before I know it this class will be over and I'll be ready to do the hardest thing I've ever had to do. Sometimes I find myself thinking ,"What in the world are you thinking????? They are your BREASTS. Are you stupid???" But then I quickly remember that if I didn't go through with the surgery that in a few months time I'd be starting the vicious cycle all over again...mammogram, ultrasound, core biopsy, excissional biopsy. And I wouldn't be so lucky and I would hear I had cancer. Then I'd have to live with myself, knowing I could have prevented it. So I know I'm doing the right thing by having the surgery.

Starting this blog, I didn't know how people would react to me announcing that I'm having a PBM. Prophlaytic surgery of any kind is perceived by some as being such a drastic, unneccessary procedure. I was all ready to yell at people to take a walk in my shoes. But luckily, everyone has been sooo supportive and understanding. I've gotten nothing but positive feedback and for that I'm eternally grateful. More than anyone could ever know. I've seen so many posts on the FORCE message boards from women who have gotten the completely opposite reaction from people. So, I know I'm one of the lucky ones.

I should have a date for my surgery soon. Until then, I suppose I'll concentrate on my school work, gym time, work and everything else.  :)

Michelle

Saturday, January 1, 2011

Happy New Year!

I cannot believe that it's 2011! It seems like we were celebrating the new millenium just yesterday, not 11 years ago. Time is going by so fast. When I think about it, that's both a scary and a good thing. It's scary becaue that means that April will be here before I know it. And it's also good because it'll be over before I know it. Does that make sense? I'm both scared of having the surgery get here to being ready to have it over.

One the girls who writes a blog on my blog list (Rachel at http://www.losingtheboobs.blogspot.com/) had her PBM in April 2010 and was done with the whole process in December 2010. That really helpd me a lot because I feel like that gives me a good time frame with how everything will progress and how long it will take. So thanks Rachel =)

Now that I really think about it I do have a few New Years Resolutions. I figure I'd share them with here. Think of this as my top 5 resolutions.

1- I think I mentioned it in a previous blog but I want to handle my PBM with as much grace and courage as possible. I also want to add some humor into it! I want it to be as easy and painless (figuratively and literally speaking) as possible!

2-I want to be a better person in 2011. I can't really pinpoint a specific fault I want to change (do I have one? Just kidding =) ) I just want to be the type of person that people look at it and think "I want to be like her!"

3- I want to make an A in one of my classes this semester. I'm not picky, I just want one! An A has managed to elude me so far in nursing school.

4- I've mentioned this before but I want to get in better shape and lose more weight. I mean c'mon that's got to be a resolution right? It's like a MUST to have a weight-related resolution.

5-I want to help others! I really think that God had me survive all of this medical craziness for a reason, and I want to use my experiences to help other people.

So there you have it, my list of resolutions. I may not keep them all but when I look back at 2011 this time next year, new boobs and all,  I want to be able to say at least I gave it my best shot.

Michelle