And...we're done

Yesterday I FINALLY had the final stages of my breast reconstruction. I had my nipple tattoos and my last dog ear cut off. When everything settles and heals I will FINALLY be complete! I feel like this entire process has always been in the back of my mind. Even though I haven't been near as immersed in the whole recon process as of late, it's always been in the back of my mind. Everytime I'd get undressed I'd look at my blank chest and feel a little odd. Like they're mine, but not. Now they'll look almost natural! I'm glad I can finally put this entire process behind me. But..not. I still want to be involved, in whatever way I can, with helping women who are going through this. I will never forget how scared I was when I was planning my PBM and recon and I don't want any women to feel that way. I feel like that God has allowed me to go through everything I did, so I may help others go through it. A lot of girls who have finished completely close their blogs. I still keep this one up and running, simply to update from time to time with things I think are interesting or pertinent to the HBOC community. For now, I'll leave you with somethings I've learned throughout this whole journey  
1- Be flexible. I started out with a clear cut plan of how things would go and boy did it ever go the complete opposite. Don't be afraid to change what you want or the timetable you want it in. Heck, I didn't want nipples and now? I'm SO glad I have them.

 2- Everyone is different. Every story, every journey. Just because someone is saying something was wrong for them, does not mean it's wrong for you. Sometimes, when women try to support each other, they end up trying to tell people what to do. Don't listen to it and go with your gut. YOU are the one who has to live with it!

 3- Please please please seek out support. Online, locally, whatever. This is a hard process to go through and no one can do it alone! It's there..trust me.

 4- Don't be afraid to tell your family and friends. You might be scared of what they'll say, but their reactions might surprise you (in a good way).  

5- That being said, there are some hateful people out there who think they can tell you what to do with your body. That's no bueno. Also, there's well meaning people who say things that you might think are offensive but they're really just trying to be supportive. Feel your emotions, definitely. But know that some things, come from a good place.

And like the Duke (John Wayne says):

Courage is being scared to death, but saddling up anyway

I found this picture on the internet and I think this about sums up my situation. See you next time!

At a standstill

So I realized I haven't posted in quite some time! A lot of that has to do with blogspot being crazy (I'm moving my other blog to wordpress soon).

I had wanted to post a quick update to how my progress is going...

Nope..I still haven't gotten my tattoos yet. I tried to schedule them a few months ago, but they wanted me to pay $400 What the what? That's apparently my deductible. I cancelled them because I could go to a tattoo parlor for less. (Although I'm still having trouble with the idea of getting a fat bearded man to tattoo nipples for me.)

I happened to see Dr C when I was in clinical a few weeks ago. She said she'd try to work it out to where I didn't have to pay my deductible. We will see!!! More later (and the new blog address to come!)

Lights, Camera, MASTECTOMY

Wait, what?

Back in 2009 when I first heard of preventative mastectomy as an option to manage my breast cancer risk, I hadn't really heard of anyone else who had the surgery. It seemed like such a radical option at the time and I was sure that if I did have it that I would be one of the few (like with Cowden's)

Fast forward to 2010 when I made the decision to have the mastectomy. I found great resources! Namely the FORCE message boards. But there was really still no one making headlines for having this surgery.

In 2011, I discovered and became  part of a group called Young Previvors   on Facebook. We've grown, have a public page and loads of daughter group now. But WOW. People my age and YOUNGER were having this surgery. But still, no celebrity behind it.

But that would soon change.

Let's see if I can remember all of the people: Christina Applegate, Sharon Osbourne, Giulana Rancic, Trisha Frick, Allyn Rose, Kara Dioguardi, E.D. Hill, Robin Roberts (the list goes on..)

But I was most surprised to see this:


My Medical Choice

Wait...is that by Angelina Jolie? As in the woman who was so sexy that with one smoldering look she broke up Jennifer Aniston's marriage to Brad Pitt (The gorgeous man he is?) The woman who is arguably still one of the sexiest women alive? SHE cut her breasts off?

Yep. And didn't even have cancer.

Now, this is an awesome move by her to raise awareness for our community. If someone like her cuts off her breasts to save her life....I mean I doubt she's really losing any of her looks. To me, now she's not only a gorgeous woman and a sub-par....ehhh she's ok...actress. She's a fellow previvor. And that makes her a tad bit more human.

However I would like to point out that there have been women for years struggling with the same choices and decisions Ms. Jolie-Pitt herself struggled with. WE set the trend on this one :)

My hope is that having a preventative mastectomy isn't glamorized now. I've already heard the word trend thrown around (yes I used it jokinhgly above). Like last season it was a Coach purse, this season it's foobs. And that makes me cringe. Having a mastectomy is a gut wrenching, soul crushing decision. But those of us who choose that route, make the decision with our heads held high, taking a deep breath, and plunging in. Regardless of what could happen. There are those of us who make it seem like a breeze and those of us (like me) who have every complication known to man.But, in the words of a fellow previvor friend, take heart. We now have the same scars as the sexiest woman alive.

**Please take a few minutes to check out: Young Previvors and read a collection of stories of women who have decided to take control of their destiny. You may even see a familiar face... me not Angelina ;) ***

Of course...

Back in December with the whole switched implant debacle, my PS advised me to wait at least 3 months to schedule my tattoos. She said it'd be easier to tattoo nipples when the girls settle and are as even as possible. They were WAY off after the one got replaced in December!

The original plan had been to schedule my tattoos on my break from school. However, with my switching jobs I knew I needed to get it done by the end of March. I even got a letter from my job saying my benefits would run through March. So I decided to go ahead and schedule the procedure for last week and I was elated. After almost two long years I was FINALLY COMPLETELY DONE!!

But then....

I get a call from my doctor's office saying that my benefits had in fact been turned off on the 15th even though I got a letter stating it'd go until the 31st. So pretty much my job screwed me...

I hurriedly ran my new insurance card for my school's plan up to my doctor's office and am waiting on them to check benefits on THIS insurance plan.

Now, perhaps I should explain. I am well aware of the act that states that any mastectomy that's covered by insurance must have the reconstruction covered as well. And I know that since I've had no lapse in coverage that I would a very good chance of winning if I had to fight it.

But, I'm. So. Tired.

I got to thinking..who needs nipples anyway? Then I realized I do. I need them to feel whole and complete. I thought about ordering more rub-on nipples (fantastic things to have by the way) and I even contemplated taking a peach colored sharpie to the girls... but that'd probably get my clothes all dirty.

There's a local tattoo artist who I know can do nipple tattoos if I'd like. I'll keep that in the back of my mind, but my gut..the same gut who told me to have the surgery in the first place, is telling me not to risk it in a tattoo parlor. The last thing I need is a punctured implant, or worse an infection from a less than aseptic needle or surroundings that lands me a week's stay in the hospital or surgery. Because...

Introducing...

My brand new, without a single post (but soon to come) blog: The World According to Michelle: Life Goes On. The original reason I began this blog was to document my journey through my PBM. Now, that journey is almost complete. I need to get my tattoos done, but Dr. C made me promise not to try to do it until my break from school! I know that there are always people just beginning THEIR journey and I don't want this blog to be so bogged down with other posts, that they can't find my story. I had always wanted this blog to help people so in order to do that, I decided to create my second blog so I can post whatever comes to mind :) I will still update this blog, with my completion of the PBM journey, FORCE news and updates or any other story that's relevant to HBOC. I figured that blogging helped me so much through my PBM that I may be able to apply that same concept to nursing school! Check back for my first post!

Nursing School

I know I've mentioned before that  I was in nursing school, but I made that statement when I was in Gen Ed. This semester started my clinical courses. So let me rephrase me statement.

"I'm in nursing school hell"

Seriously.

Yes I know this is what I want to do with my life. This is my passion. But....oh boy. This will be the hardest thing I've ever had to do. I figured I'd touch on it from time to time because a) blogging helped me to keep my sanity while going through the PBM so maybe it'll work now. and  b) the reasoning behind me being in nursing hell in the first place is due to my colorful medical history.

Most people would run away if they had my genetic problem anytime someone suggested being a nurse. Or anything in the medical profession.  I even had a doctor ask me, "Are you sure? Don't you spend enough time in hospitals and doctor's offices?"

Well, in the words of Ricky Ricardo, I'll 'splain.

When I was in ICU for my brain tumor, I saw just what a difference a good nurse can make. And what a difference a BAD nurse can make. I even had nurses and doctors tell me what a great nurse I would make because of my experience as a patient. I, (along with some prodding from God- I wanted to be a lawyer) decided to bite the bullet in 2010 *after struggling for 7 years with the decision* and go to nursing school.

Here I sit, 3 years later, at my lowest point self esteem wise and my highest point weight wise (that I've been in awhile- I eat when I'm stressed!). This class has been my hardest I've ever taken. It messes with your very SOUL. (And anyone who thinks I'm melodramatic, I can put you in touch with some of my classmates and they'll confirm it). I'm tired, my back is knotted up from stress, I've literally been studying ALL DAY LONG and I'm not confident in my ability to pass this test tomorrow.

I've been working full time since I started school, much to everyone's surprise. Half a semester into clinicals and I see why everyone is shocked. I cannot work 37.5 hours a week and go to school. And study. And go to the lab to practice skills. I've been frantically applying for part time jobs, and am waiting to hear back about an interview I had at a local hospital for a part time position! (Fingers, toes, eyes crossed and prayers please!!)

In a few weeks, I'll enter the hospital for the first time and have a patient to take care of. God help us both.

I could go on and on about the horrors of nursing school, but I have to go study (surprise, surprise). I'll try to update from time to time. if anything to keep a record of how crazy I feel right now!

Letting go....

The final stage. Finally letting go of everything I've been through and moving forward with life. No regrets.

I always had just assumed that this would happen naturally and never really paid much attention to it. Well...it's a little more complicated than that :)

I'm finally to the point where I could completely stop if I wanted to, but I am going to get tattoos in April. Just to complete my new foobs. But (Lord willing) I won't be going through surgery on them again. They're not perfect, but neither were my natural ones. But they are something..they're mine. I no longer get a little jolt of surprise when I look in the mirror when I'm undressing. I just see my breasts. (Yes I said breasts not foobs.) They're a part of me, they're a reminder of how amazingly awesome and brave I am. I may not be a lot of things, but  I am a fighter!

Last Wednesday was Ash Wednesday which marked the beginning of Lent. I decided (rather boldly) to give up Facebook, which had quite honestly started taking over my life. I didn't even realize it until Wednesday, when I found myself idly opening the app on my phone without thinking about it. So, needless to say the first few days were hard..but I got through them! I'm using Facebook on Sundays, but until Easter that's it for me!

In teaching my 5th graders, I always use the comparison between Lent and spring time. They are both time that new life is formed, from what used to be. For example, my kids put butterflies in a cocoon as a project with their Lenten resolutions on the back. They'll color a part of the butterfly each week until it's completely colored come Easter.

I always think of what the priest told one day during his homily. He said sometimes you have to go through trouble in order to become the beautiful creature God wants you to be. I think that's what is happening to me. I went through a period with my PBM and complications, changing churches and misunderstanding/strife in the extended family. I was hurt and disappointed and I'm sure I did some things to hurt and disappoint as well. So right now..I'm saying I'm letting go.

One thing that's really bothered me is people who want to bash the Catholic church without even knowing what goes on in there. People that I've known almost my whole life, say things that belittle the Catholic church..and they're not even correct. And that hurts. It hurts because there's obviously no respect for what I choose to believe and how I practice my faith. We're all Christians. I'm just on a different place in my spiritual journey now.

I was talking with friends after Mass about it today. About how absolutely furious it made me. And how much it hurt. I'm not a dumb person by any means..I'm capable of making my own decision. But that's quite obviously not respected. It was pointed out to me that there are always ignorant people out there, who'd rather stay ignorant than to actually educate themselves. Sadly, it's true. I can offer all of the insight into my church, offer articles, books, etc. But these people would rather just hold on to their ignorant, incorrect perception.

For once and for all I've had to decide that, that is not my problem. I'm letting it go. Not everyone will agree with where I choose to attend church now, and that's ok. I need to remember that not everyone stays in your life forever, and some people you just need to be thankful for what role that they did play and cherish the time you had together.

I'm letting go.

Also, something happened on Facebook that I honestly can't even remember how/when it started. And every family member involved will tell you something different. I'm tired of being angry. I'm tired of trying to convince people my side of the story. I tried reaching out to some of them over Christmas, by sending a card..and received nothing in return. I also saw some of them out and about one day..and they turned and walked away. Does it hurt? yes...but there's nothing I can do about it now. I've done my part.

I'm letting go.

I'm not going to make everyone happy. Not everyone is going to like me. I would never personally be mean or hateful to someone, but it's ok if not everyone likes me. I'm me...and I don't know what else to be!

I'm letting go.

Never ending circle

Two years ago when I decided to have my PBM, I remember feeling so alone and scared. I've always felt isolated due to my insanely rare genetic mutation (Cowden's affects like what...2% of the population?) and this was no help. I remember my Dad saying to me, "You need to talk to someone about this. I know you want to be strong, but you can't keep this inside." I remember just kind of chuckling like "Who am I going to find???"

While there was no support group locally for me to turn to, I found a wonderful support system through the FORCE message boards. Even though the women there were at least 10 years my senior, they helped me through a lot and for that I will always be grateful. However, it was hard talking to older women, because they didn't relate to everything I was going through. They tried, and they listened to me rant on and on but I still sensed that they really didn't get it. FORCE has a message board forum entitled Young Previvors, but things are pretty slow on there so I didn't make any connections.

One thing that struck me, is that how in awe of these women I was. Some of them were years out from their surgeries, yet they still hung around. They made it their duty to ensure that other women didn't feel alone. I knew then what I had to do. I had to stick around after I was healed and whole again, in order to pass the knowledge and wisdom I gained onto other women who were going through the same thing I was. Being a Previvor is not something that you walk away from. You are ALWAYS a previvor. It's a never ending circle, and we have to support each other through this.

I promised myself two things right at that moment:

1- I'd start a support group in Memphis. I knew there had to be other women faced with these decisions that come with being high risk and I wanted to be sure to be there for them. Everyone deserves face to face support and I wanted to make sure it was offered.

Glad to say, we accomplished that with our FORCE group www.facingourrisk.org/memphis

2- I also wanted to help other young women who were facing these decisions. I knew from experience that there were completely different issues that go along with being young AND a previvor and I wanted to make sure to do my part to help those women as well.

One day, I saw a post from a girl named Liz, talking about a group she'd started on Facebook called Young Previvors. "Hmm...." I thought, "I'll check it out." I sent in a request to join, and sort of "lurked" there for awhile. You see, I'd completed all of my major surgeries already and was nearing the end of my journey. I wasn't sure if I could really even offer anything useful.

After awhile I decided to start posting. I'd respond to a few posts and made a few of my own. I started to realize that these girls were awesome! They were just like me! Trying to find their way in life, dealing with everything that goes with being in your 20's as well as dealing with being high risk.

Then, came the great complications of 2012. *SIGH* My infection earlier in the year and the hurried exchange of my implant in December. And they were there for me! I posted a message explaining what was happening and within minutes had several replies. It was quite a great feeling! (I admit I did feel slightly jealous it wasn't around when I had MY mastectomy)

By the end of 2012, I was posting on a daily basis. These girls had become my friends, my sisters. The ones I could talk to about anything, and strangely enough I had never even met some of them. (I did have the pleasure of meeting a few YP's at the FORCE conference in October). I have told them things I haven't told anyone else and I've never met with anything but love and support.

At last count there were 200 people who would say the same thing.

A few days ago, we learned that our group was disabled by Facebook. The reasoning was pretty vague, but the general assumption was that it was due to violation of Terms of Service. You see, there were pictures of all stages of breast reconstruction in our group. Members (including myself) would post pictures to show other girls what our reconstructed breasts look like. I cannot tell you how helpful it is to look at pictures, especially of people your age before such a big surgery. Anyone who thinks that deciding to remove your breasts is an easy task is seriously misguided. Seeing a picture, to just get an idea of what to expect is PRICELESS!

The group privacy settings were very strict and members were screened by Liz. Members were also aware of the chance that pictures would be posted. Anything posted in the group could only be seen by members of the group.

We are fighting SO hard to get it back. The group is truly a blessing for girls around  the world. In order for YP to continue to be so important, we need our group back! Apparently Facebook doesn't want to allow these types of photographs (since they are partial nudity really) but will in cases of breastfeeding or of other importance. We want to show them that they are SO important! And not sexual in nature at all.

We are waging a viral campaign to show Facebook how important our group is! Here is what you can do to help:

1- Pin under the hashtag #saveyp on Pinterest
2- Tweet using hashtag #saveyp
3- Like our public page on Facebook Young Previvors
4-  Share, share, share!
5- Send an email to: disabled@facebook.com and/or appeals@facebook.com


Thank you so much!

Top 10 Things I've learned in 2012

As we said goodbye to 2012 and hello to 2013 I began to reflect on how I've grown over the past year. It's been an eventful year, and I learned a lot. Here are the top 10 things (not in any particular order):

1, Years ago, when I was making the decision to start attending a Catholic church, I felt as though I were doing Christianity wrong. I wasn't getting what other people were getting out of the Baptist church and for awhile I was gripped with fear that maybe I was a fake Christian. Luckily, I found the Catholic church and found a place to call home. Now, I had the same thing happen but with more political beliefs and world view in general. I heard what my conservative friends were saying, and it was something I just couldn't get behind. Starting in early 2012, I saw some down right hateful things being said, all in the name of politics. I knew that wasn't what I wanted to be like. I began to wonder if I should just not pay attention to politics at all, because surely a good Catholic girl couldn't be a Democrat? Well, luckily I was wrong. Now, there are people who say that "You're not a liberal, you just think you are" And maybe I fall more into a Moderate Liberal. But, I will say this. I identify more with liberals/Democratic party then I ever will with the other side. And I learned that that is ok. There are other good, Christian people out there who believe the same things I believe. And that makes me happy.

2. Some relationships aren't meant to last forever and you shouldn't force them. I began to realize that while I cherish some relationships I had with people, that we are just in different places in our lives now. Our paths have gone in different directions. And that's not a bad thing. I'll always cherish the parts we played in each others lives and I'll always be here if needed. For now, it's just time to move on.

3. In contrast, I learned that some relationships, TRUE friendships can be picked up after years apart, like nothing happened. 

4. I learned that some people put on a pretty good front. So much so,  that I desperately wanted to be like these people at one point in my life. Looked up to them in fact. But then I saw this side of them and realized everyone has their problems. And I'm pretty good the way I am now :)

5. Some people can't have a mature discussion. It took me awhile to learn that only a handful of people can engage in an adult debate with different opinions and not resort to getting upset, talking down to the other person, or calling them names. 

6. Some people really don't like it when you think differently than them, I prefer to have a diverse group of friends. It'd be boring if everyone thought like me :)

7. What a priest said to me a few years ago is true. Sometimes, you need to forgive not for the other person's sake but for your own. Some of the time, the other person with whom you've had a disagreement with may not even care that you're sorry or that you forgive them, But letting go of that grudge and anger can do wonders for YOU.

8. It still infuriates me when people have misconstrued views on Catholicism. And refuse to actually listen to the truth.

9. Not everyone will like me. Not everyone will be nice to me. And that's ok. They're the ones missing out.

10. I don't like being the victim. At all. Never have, never will.