HBOC Week 2016

Wow.....been almost a year since I've last posted. Oops. But if you think about it, isn't that almost a good thing? That means that I've moved on....most days I don't even think about what I went through in 2011. (Wow....5 years ago??) I think about how scared I was, how I wanted to change my mind in the eleventh hour. After I started having complications I was convinced that I'd have to live completely breastless (foobieless?) my entire life. I knew in my head I'd made the right decision, but I still remember sleeping in the recliner the first couple of weeks and not being able to get comfortable. I remember breaking down into tears for no apparent reason. I remember calling Mike in a panic when I realized I was draining profusely from my expander were my surgical scar had busted open.

Morning after my mastectomy. Trying to get warmth
to my necrotic areas to get blood flowing

All of that eventually ended. I got my foobs, got my implants, got one replaced because in a simple in-office local anesthetic procedure a hook from the stitch got dislodged in it. No lie. My PS's office is across the hall from an outpatient surgery center. I waddled over, with my hand and some tape and an ABD pad holding my implant in. I remember the entire staff doubled over in laughter about it. How I got dropped off at my PS's office and then had to hurriedly call around and get a ride back home after my surgery. I remember having to still be awake (since I hadn't fasted before) and my PS telling me the implant needed to be replaced. I just laughed uncontrollably and said "Merry Christmas to me" I mean seriously what is my life? Who does that happen to?

Despite ALL of this, I finally got through it and here I am several years removed from all the craziness.  You know what? I look at the girl in the photo. The one who's tired from surgery, worried about her necrosis, and unsure of the future. I also see quiet strength in her. It's a whisper but it's there. She won't let this defeat her.

So my nugget of wisdom for this HBOC week? If you're in this position I'm truly sorry. It sucks. Like, for real. Most women struggle with where to eat, what to wear, etc. And you're having to make real decisions. Decisions that will impact the rest of your life. But I can promise you that every single one of you has the power to get through this. No matter how you decide to do that...surgery, surveillance, etc. You've taken the first step. You have all the power. You just have to decide how to use it.

Pinktober

Well it's that time of year again. My Facebook timeline is flooded with either pink ribbons and sparkly pink memes touting breast cancer awareness and "Save second base!" or articles and memes that almost border on angry that people are making light of a horrible disease and how we should fund research not awareness. I would say I fall somewhere in the middle of these two categories.

I would say that I am keenly aware of breast cancer. I don't need more awareness in my life. I watched my grandmother fight a long hard battle with it that she eventually lost. I met my biological mother for the first time who later passed away after battling the disease. She died the day before my grandmother died..which if that's not irony I really don't know what is. I had my struggles too, with the testing and the waiting and the wondering. Then, if you read previous entries you'll know, my mastectomy was hardly a walk in the park. To this day I still get sharp pains or dull sensations in what now serve as my breasts. I'm not entirely happy with them but what woman is ever entirely happy with her body? But I'll take that over a cancer diagnosis any day.

But I digress.

The point is, WE GET IT. We all know breast cancer exists. Calling this "breast cancer awareness month" is almost pointless at times.

And the pink....lord jesus the pink. And don't get me wrong, I love pink. "Pink is my signature color" (If you don't know what that's from then you don't know me at all). It just is so disgusting that companies will throw a pink ribbon on their product, make some vague promise that you're helping breast cancer research and it FLIES off the shelf. The people buying it have the best intentions but the company gives little, if any, proceeds to actual breast cancer research. Do your homework! If you want to contribute, great! But make sure you know where your money goes. I only buy products that name a very specific reputable charity. Then you'll be really making a difference.

On the flipside, I celebrate October because of the people who've fought, and those who are no longer with us. THEY'RE the real heroes and they deserve to be celebrated. And we deserve a cure, so no one else has to earn the term "survivor" or "previvor" If I think I had it rough? I can't even imagine what these women go through.

Every October I remember how pleased Granny was with the month. She loved the pink ribbon and all of the awareness and celebration. She was so pleased the year that most of her grandchildren did Race for the Cure in her honor.

So wear your pink. Buy your pink products. Hug a survivor or someone who lost a loved one to breast cancer. Just remember to donate your money to actually finding a cure so that one day October won't be breast cancer anything any longer. And remember early detection is key....so feel up those girls and go get them smushed in a mammogram machine if it's time.

And amidst all of the pink and the pretty, just remember that breast cancer is not a pretty disease by any stretch of the imagination. And for the love of all things holy...don't start with those stupid Facebook games. Because I will find you. And I will kill you. (Again, if you don't know what it's from...)

Time flies

Wow. Its been awhile since I've posted anything to this blog. Most days, I don't even think about the fact that I had a mastectomy 4 years ago. When I look in the mirror I just see myself...not two foreign objects siting on my chest that pass for breasts. Which is cool. I'm finally accepting myself. Which has honestly been the hardest part of this journey.

Right before my surgery 4 years ago I was in the best shape of my life. I pretty much lived at the gym, was at the lowest weight I've ever been and was really happy. I knew my surgery was coming up and I just figured it'd set me back a few weeks. Well......if you know me or have read other posts on this blog you know that I was sadly mistaken. I had complication after complication and I became really depressed. And being that I'm an emotional eater, I ate. A LOT. I remember Mike looking at me and saying "You're going to hate yourself when you realize you gained weight," And of course,,,he was right (I'm not telling him that though because he'll get a big head). After a few months I finally drug myself back to the gym just to have it close a month or so later. I made a couple of failed attempts to get back in shape but nothing really took.

I ended up back at my starting weight. Great. There goes all my hard work I put in. And my chest was considerably smaller now so it was really noticeable. I felt gross. I also felt like I couldn't do anything with my upper body since my surgery.

After a few years (yes years) I started going to a gym a lot of my old gym friends went to. And I loved it! I even worked out with a trainer some. I kept insisting I couldn't do anything that required chest muscles. Then it hit me...I had become one of those people who uses their health problems as a crutch. So I ignored that voice in the back of my head and I tried. I did it! I still suck at pushups but hey I did a whole 25 the other day (stop laughing). And I really like being strong.

Right after my last brain surgery I got a tattoo on my foot. The Chinese symbol for "strength" I felt really strong for going through 4 brain surgeries, But yet, after my mastectomy and all the 84,000 things that happened after (ok that number is a slight exaggeration). I felt defeated. Like I had nothing left. But I realized today that while I may not have my real breasts or be able to breast feed, I do have breasts that'll stay perky and breast feeding isn't that important to me anyway. And I don't have to wear a bra which is a MAJOR plus.

My advice to anyone who is just starting this crazy, nutty journey....be patient with yourself. Its taken me 4 years and I'm still feeling some crazy emotions sometimes. You may be giving up some things, if you choose the surgical route. I know I did..  But I gained so much more Power over my health. And strength,,,it's still there.

On a more personal note, I've been so busy lately. I may not be updating on this blog again. I won't say never, because I may chime in from time to time. But I think I've reached the point where this is no longer the biggest thing in my life. Or any of my health problems. I refuse to let my Cowden's or anything it's caused control me. And I go back to nursing school in August so I really won't have time to. Feel free to check my other blog if you're just overly interested in the other parts of my life.

Life Goes On

A Look Back

When I first was diagnosed with Cowden's Syndrome, I was almost ashamed of it. My entire life, while I was going through medical problems I felt like an outsider...this was basically going to seal the deal.

As I started going to doctor's appointments, I'd have to spend a good 15 minutes explaining what Cowden's even was. I guess I'd talked myself into believing it simply wasn't real....if doctors hadn't heard of it it must be fake right?

Then I started getting lump after lump in my breasts...and two very real breast cancer scares at the old age of 27. The doctor kept guiding me towards a mastectomy (he was strongly recommending it but emphasized it was my decision.) Part of me wanted to simply run away and never see that doctor again. If I ignore it, it'll go away right?

But I didn't. For the first time in my life I actually made a decision for myself. (And trust me, I tried to get other people to make it for me). However, this was something I had to do on my own. And the rest...as they say....is history.

I'm 30 years old now and my mastectomy is merely a memory. A distant one at that. However, I feel like the very essence of being a previvor is engrained in my personality now. Making the decision to have a mastectomy was a hard, gut wrenching, soul searching one. But I did it. I took control and I did it. I wouldn't be the person I am today without having had made that decision.

There are days when I don't even think about my mastectomy. Week even. But there are women out there who are just now beginning this scary journey. Women who are a lot younger than I was. Preventative surgeries aren't for everyone. I always say getting your genetic test results is just the beginning. Now, you have the information and you decide how to use it. These women still need support. A place to go and ask questions, cry, laugh, vent without people thinking their crazy. (I'm having a flashback to a few weeks after my surgery and I'm sobbing uncontrollably. Mike is looking at me with a horrified look on his face and I'm insisting I don't know why I'm crying.)

During my surgery the FORCE message board was my rock. Those women were all significantly older than me, but I couldn't have done it without them. As I started to recover I saw a posting about a new Facebook group starting called Young Previvors. I was almost done with recovery, but I figured I'd check it out.

Needless to say, that group has become like family. I help admin a smaller sister group and offer help and insight where I can.

Starting this journey is hard. Staying the course is hard. This place will be a lifesaver because you can't go it alone.

For the rest of my life, I'll feel as if I'm connected to these women, this cause. I am and always will be a Previvor.  I'm a strong woman, capable of making the hard decisions. I am proud of myself for how far I've come, and can't wait to see where me and my 3 year old foobs go next!

Guest Post

Every now and then I'm contacted by someone who has seen my blog and wants to contribute content they think would be beneficial to my readers. Below is a contribution from Dr. Sheryl Pilcher, a plastic surgeon in San Antonio. Even if you're not near the San Antonio area, its a good comprehensive overview of the tissue expansion process. Enjoy!!

What Breast Reconstruction Patients Can Expect During Tissue Expansion

If you have undergone, or plan to undergo, a mastectomy, your plastic surgeon, Dr. Sheryl Pilcher, will begin your breast reconstruction with tissue expansion. She will start the process during your mastectomy or can begin after a wait period of several weeks, if your oncologist recommends additional treatment. Before she can rebuild your breast, she must first insert a tissue expander under your breast muscle to make room for your final reconstruction.

What Is Tissue Expansion?

Tissue expansion is a technique used by a wide variety of plastic surgeons. For breast reconstruction, it begins with the surgical placement of a tissue expander, which your plastic surgeon will manually fill over time. The slow expansion of the device stretches your skin, but it is not simply a stretching mechanism. This also signals your body to develop additional skin tissue to accommodate the growth within your body. Expansion provides the extra skin needed to reconstruct breasts, either with implants or tissue from your own body, after a mastectomy.  

The Procedure

Either during or after your mastectomy, Dr. Pilcher will surgically insert a silicone balloon beneath your skin and breast muscle. The expander is built with a port through which Dr. Pilcher can place saline solution to fill the expander. The expander also includes a catheter and drainage tubes. Your plastic surgeon will use the catheter to administer local anesthetic, while the drainage tubes remove excess fluids. You may feel some pressure during the saline injection, but your surgeon will closely monitor your sensations to ensure minimal discomfort. You will need recovery time after the procedure, such as avoiding heavy lifting for approximately six weeks. However, you will not require recovery time after your weekly fill appointments. While you may return to your daily activities, if discomfort occurs, you may treat it with ibuprofen. Your expansion process will last up to six months, or until your surgeon determines you are ready for the next step in reconstruction.

What Types of Sensations Can I Expect?

Every patient responds differently to tissue expansion, so there is no one set of potential sensations or treatment period. Following stretching exercises provided to you by Dr. Pilcher will help improve your comfort. However, consider the following common effects of tissue expansion, so you feel informed and know that your sensation is normal:

·         You may experience discomfort within the first few days after your saline expansion

·         Your chest may feel tight – this sensation typically goes away with time

·         Shoulders may feel stiff

·         You may experience mild pain in your back

·         Skin may become dry – apply a gentle moisturizer, avoiding your incision

However, if you experience any addition swelling, bruising, redness, fever, or unyielding pain, contact your plastic surgeon immediately.

About Sheryl Pilcher, M.D.

Dr. Sheryl Pilcher, your board-certified, female plastic surgeon, has practiced plastic surgery in San Antonio for over 15 years. An honors graduate of Temple University, Dr. Pilcher trained in Plastic and Reconstructive Surgery under internationally renowned teachers at the University of Virginia, and focuses her services on breast surgery, body contouring, and facial rejuvenation techniques.

Website: http://www.accentplasticsurgery.com/

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.

Just when you thought it was safe..

Back in September I had my "lift" on the left implant and the dog ear from my right side cut off. The technical term I had was capsularorotomyishthingy (that sound is the collective gasps of horror of my nursing teachers). Basically they put heavy duty subcutaneous stitches under my implant to lift it up. Easy peasy right?

Well for normal people..

Back in Sept I had an infection. We opted not to lift righty until later and my PS swore up and down I could get my tattoos done as well. So I called to schedule righty and my tattoos and I find out the doctor only wanted to do one tattoo. She wanted to give righty time to heal after the procedure.

Oookkkk I can deal.

So after I decided to put of brain surgery since the headaches seem to subside (for the moment anyway) I scheduled this procedure for 12/12. I mean 12/12/12 is a special day right? Surely luck would be on my side. I mean I've been through some form of complication after every single time my PS so much as waved a scalpel in my general direction. Enough is enough right? Or so I assumed.

And we all know what that means.

I have to scramble for a ride to the PS office because it's less than 2 weeks before Christmas and everyone is busy. I finally convinced my Dad to take me and drop me off and I was going to get Mike (who was working) to come back and pick me up. I was only going under local anesthetic but would still be loopy and probably not in the best condition to make the 25 minute interstate drive home.

I get back to the procedure room and my PS tells me she wants to put my tattoos off until right before New Years. She says that she wanted to give everything time to settle in, so they could be certain to get my tats symmetrical. Ok that's cool with me.... I didn't want to end up with a nipple on the side of my boob. My PS then neglects to give me the normal Valium/Lortab cocktail before an in office procedure (because I'm so calm and level headed she doesn't have to worry about me passing out on her). In hindsight, it probably would've been better to get it.

She numbs me up and starts to work. She's making small talk and her nurse is seriously talking to me like I'm a deranged patient on the edge of snapping. Seriously. She was sweet but I was ok... I wasn't having a meltdown and didn't need to be talked to in that calm, even tone reserved for crazies. My PS looked at her and said "Michelle's ok, she's been through a lot.. this is nothing" Well, the nurse was doing her job.

About halfway through the procedure (I kid you not). my PS says, "Oh shit" Well, right away warning bells should've been going off. Of course me in my semi-drugged state (no Valium though, just numbing stuff) just let it slide. I'd gotten fairly used to the motions that she was going to make during the procedure and she wasn't doing that. Instead, she was gazing at my chest intently and moving her hands around my chest. She looked at me, then without saying anything looked at the nurse and asked for some doohickey (again, gasps of horror) that closely resembled forceps. Umm..that's new.

I look up at her and raise my eyebrows. She tries to avoid my gaze, but then she says. "I lost the stitch"

It took me a minute to digest her words but when it finally clicked I said "You did what?"

She goes on to explain that the hook that's supposed to pop off the stitch when she pulls it back out, popped off while it was still inside me. She continues to look for about 10 minutes and finally I ask the question.
"What happens if you can't get it out?" Her reply? "We'll have to go across the hall to the OR and get it out there."  I think my response of "WHAT?" shocked her a little bit. She confirmed the answer and I (swear) said, "Can't I just wait to poop it out?"

Luckily, there's a surgery center across the hall from her office. She finally conceded the fact that I was having surgery and called to get me booked into an OR. While I was trying to process all of this I came back to one fact:

I had no ride.

Oh dear Lord, I was one of those people who get dropped off for surgery. I made some quick phone calls and explained to Mike and my Mom what was going on. (They probably thought I was just doped up on Valium). I was assured I'd make it home some how. Dr. C was so repentant about the whole thing SHE offered to take me home.

The nurse hurriedly taped my gaping hole that was my breast up and I threw on my shirt and scurried across the hall. In their defense, they got me back pretty quickly. I stripped, changed into a gown, peed in a cup (all the pre-surgery glory) and anesthesia came to talk to me. The anesthesiologist said, "Hey you're the Cowden's syndrome girl. I've been in one of your surgeries before." I smiled at him and said "Fantastic. I'm famous." He asked me the standard questions (after I went through my explanation of just what the heck Cowden's Syndrome is to the nurses) and when I said I'd eaten already that day (because you can do that with local anesthetic) he said the dreaded words:

"We won't put you all the way under. You'll be awake, just very sedated."

Oh. My. God. That's been my worse nightmare. Surgery while I'm awake??? I swear my heart stopped right there. He assured me I'd be fine and he'd be there the whole time. They wheeled me back to the OR and thankfully had the good sense to cover up my chest with a drape so  I was just looking at the blue sheet. The anesthesiologist gave me the good drugs and I started feeling very drifty. I did actually fall asleep a few times (who woulda thunk it?) but they tried to talk me through the whole thing. They told me when they found the hook, and that they were removing it. I heard an unfamiliar male voice say "Wait what size is she?"

**at this point my anthesiologist leaned over and explained he was a partner to my PS**

My PS then said "Michelle, we're going to give you a new implant since this one may have been ruptured" At which point I said "Do I go to sleep for that?" and she said "No but we're about to do it."

I looked over at my now best friend and was given another shot of the good stuff. To which I said "Best Christmas present ever" and began to feel all the tugging and pulling. (Like Mike said, it really should be harder to pull an implant out).

Surgery was FINALLY over (I prefer to be knocked out cold during the whole thing). and Mike finally came to pick me up. I've been on preventative antibiotics, and while my intestines hate me, it's managed to keep any infection at bay. My new righty is settling nicely, so I'm better than I was right after surgery (It looked SO bad).

And yes I went for a follow up with Dr. Cooper. And got the news I was now going to wait 3-4 months for my tattoos. Just because of all that I'd been through to let everything settle.

**BIG SIGH**

It'll happen...

.........one day

.........eventually

TV Interview and Head Stuff

Well folks it has been a very busy few weeks for me! On October 29, I was on WREG Live at 9 to promote FORCE. Check out the interview here. It was very exciting and although I am extremely over critical of my appearance, I'm happy with the message that was promoted!

Now...onto the head stuff. I saw my neurosurgeon 11/1. He basically gave me a version of the following spiel:

"While there's no cause for immediate alarm, since there is no rapid growth or swelling it would appear that the tumor is putting pressure on your brain. Now, that being said, the symptoms could resolve on their own, or they could get worse. So if you want to have another surgery to fix it, because I know that has in the past, we can do that. Or we can watch and see"

*BIG SIGH*

Why oh why does it always come down to me making surgical decisions? I almost long for those days when I was told what to do! As much as I don't want to have the surgery, every practical bone in my body is telling me to do it now (I'm out of school until January, I've met my insurance deductibles and out of pocket max) but I don't wanna...

You see, every time I have surgery, there is a slight risk of inhibiting some cerebellar function (BAM I went all nursing student for a second). The first surgery I had major changes..handwriting, walking etc. The second and third not so much. So, there's a good chance that I could make it through fine. But there's that small(ish) chance that I will be set back some and I'm terrified that would mean that I'm not cut out for nursing school. You see, no one wants a nurse with bad hand eye coordination. So, there's a partt of me that wants to definitely NOT have it because I'm scared of what the outcome would  be. But, there's also another part of me that thinks if I put off the surgery then I'll just get worse in a few months and have to miss school and that's a debacle I'm not ready to face.

I. Don't. Know. What . To. Do.

With me feeling this conflicted, I'm certainly not ready to jump into any big decision. My headaches have let up slightly, so maybe they're on the way out. So we'll see what the next few weeks bring.

Another thing that happened in the past few weeks is that we elected our next President. Or, should I say re-elected Barack Obama. I'd have to say that it was quite a rush..finally listening to the issues, making my own decision, casting my vote and watching my candidate win. I can't wait to see what the next 4 years will bring.

I won't go into where I stand on the issues, because honestly I'm tired of rehashing my opinions constantly. I will say, that I found myself immensely disappointed in several people I know. So, so hateful. So hateful.  I won't even pretend to understand it. But it's due to that overwhelming "I'm looking out for me first." or "us vs. them" or "If you're not with us you're against us" mentality that I could not vote Republican. Not until that party steps away from the extremism and gets back to reality.

That being said...honestly...seeing grown people downright attacking those that choose to express a different opinion on the matters. Really people? What happened to respecting everyone? Anyway, I'm hoping that this type of thing dies down over the next few weeks. That being said, I will continue to post things on Facebook, Twitter, HERE, etc that interest me simply because I can. And if people feel like they need to remove themselves from my life because of it..so be it.

Not to come off as bitter or anything but I'm very tired. My eyes were definitely opened to some truths about people and the world in general lately.

Since that's off my chest it's off to ZUMBA!!!!!!!!!!!!

Yin and Yang

When I was younger, and the Yin Yang sign was becoming very popular, I was intrigued by the meaning. With good there's bad, with bad there's good. I was very philosophical in my early years apparently.

And that's certainly true here lately. I've had really good things happen. I went to the FORCE Conference...which was an amazing experience! I learned so much and met so many wonderful people. Also, Irene and I stayed in an AMAZING hotel (where the conference was) that was extremely out of my price range. And we also went to Downtown Disney which was amazing. I definitely want to go back and get the whole Orlando experience.

I really did enjoy the entire conference but my favorite thing was the Show and Tell Room. And no, it wasn't my favorite because I walked around shirtless for 2 hours. I really felt like I was helping people! I really wish I'd been able to see someone's reconstruction and have an open, candid discussion with them before my surgery. I really felt good thinking that I was helping people with my story.

We came back with lots of great ideas for our local group! We have a meeting coming up and several fundraisers in the works. We have a Scentsy Fundraiser right now and are working on getting a Thirty One fundraiser (URL to come). There's always the FORCE Cafe Press Store or if you're not in need of any nifty little item you can always just donate! Lots of ways to help a wonderful cause!

Tomorrow, I, along with my genetic counselor, will be on Channel 3's Live at 9 to speak about the FORCE group. Irene will be there too (off camera) and I'm really excited about getting the word out to this many people! And I'm also hoping I don't make a fool of myself on camera :)


There is also a fundraiser in the works that I'm SUPER excited about! Once we get the details we'll make an announcement but it will be AWESOME!

Ok, so by now you're probably wondering where exactly the bad is in all this good, right? Well.....

When I got off of the plane last week, I felt a little...funny. I just figured it was still pressure left over from flying. So I ignored it, and went on about my day.

The next day when I woke up it was still there. What in the world? So I figured it was just sinuses. I mean I was coming from Orlando where it's not amazingly humid and coming back to the swimming pool of humidity that is the Mid South. So I just popped a couple of Benadryl and tried to ignore it.

And then a few days ago my headaches started to change. and I started to feel strange all over. Not bad...just strange. And then it hit me... this is how I feel if my brain decides it wants to start being cranky.

I did some research on the Internet (I know, I know I'm a big advocate against that. I just really wanted to read that I was being stupid). I read very conflicting things about whether a VP Shunt could be affected by flying, but did read that it pretty much definitely can mess with a programmable shunt when you walk through the airport metal detectors. I had a brief flashback of me merrily skipping through the metal detectors barefoot in Orlando, not bothering to explain to them I have implants and a shunt and need special screening.

CRAP.

I called the doctor and asked the nurse in a small, quiet voice if my shunt could be messed up by flying. I started giggling and said "I don't want to sound like the girl who cried wolf, but I wanted to check" and she says. "That's definitely possible"

DOUBLE CRAP.

So now I have an MRI and doctor's appointment scheduled for next week. Hip-hip-hooray. Oh and I have instructions to go directly to the ER should I get worse.

I hate this..

In my mind- best case scenario they just reprogram my shunt. They stick a little magnet to my head, hit a button and BAM my shunt is ok. But, since I'm so disheartened with the whole patient experience, I'm already picturing myself strapped to a million machines in the ICU after a 4th craniotomy. I know, I'm super optimistic right?

I prefer to think of myself as a realist when it comes to medical problems. That way..I'm never disappointed. When you start at the bottom, there's no where to go but up!

For all my complaining and moaning and groaning I know I'll be ok. No matter what. Because a philosophy I discovered when I was that healthy 19 year old stuck in the ICU the first time is that no matter what happens, I still have a choice whether to be miserable or not. I can either be miserable and moody the whole time or relatively cheerful and happy. Either way, it is what it is and I have to be there no matter what.

All I know is, I'm steadily racking up stories to brag about in my old age ;)

My Two Cents

Growing up, I always considered myself pro-life. I always thought that abortions under any circumstances are wrong- because that's killing another human being and all human life is sacred and it's not our place to take it away. But lately, my stance has changed.

Now, do I think it's ok to kill babies? No, no I don't. I still think abortion is wrong and I'd like to think that I would never have one. But I've never been victim to a rape, never been in a life threatening situation. Here lately, there's been something that's been weighing on my mind lately. All of the women's rights that have come to the fore front of this election season  have gotten me to rethink my position.

I've always stated that my PBM was the best choice I could make because it was MY CHOICE. No one told me I couldn't have it. No one tried to dictate when I could have, how I had it, or where. No one said, "Well why don't we wait until you have cancer?" then subsequently left me to fend for myself when it came to paying medical bills, dealing with treatments, etc. I made the decision I needed to make for my healthcare. Like it, love it or hate it..it's my choice. No one has to deal with the repercussions but me.

So I started thinking...what if some over zealous politician took away my choice? How would that make me feel? 

If Roe V. Wade is overturned, then that is just the beginning. There's no telling what other choices and freedoms will be taken away. And if you don't think that's true, think about the concept of legal precedent. Legal precedent is defined as:

a. An act or instance that may be used as an example in dealing with subsequent similar instances

Judges 10, 20, 30 years from now can look at the taking away of a woman's right to chose where abortion is concerned and take away rights in other instances. And I am not willing to make that sacrifice. I know what's best for my healthcare...not some middle aged politician who has never met me and probably never will.

Another thing you may be thinking: why would I, a Catholic, be ok with being pro-choice? Isn't part of my faith the sanctity of human life from conception to natural death? 

Yes, yes it is. 

But the key words of that sentence: my faith.

One thing I love about this country is that it's made up of so many different types of people. So many different backgrounds and religions. And the beautiful part of freedom is: THAT'S OK.

Here lately, I've seen so much HATE from people where the election is concerned. If people don't believe your way, they are automatically idiots, crazy, lunatics etc. People have called the President a Muslim, in bed with terrorists, a Socialist, etc etc. People have called Governor Romney an elitist snob, out of touch with what the real American needs, a liar, etc., etc. And that's ok too. You see, in our country, you can pretty much say what you want. THAT'S why people are clamoring to get into this country. Because you have so many freedoms. 

One of the greatest of those freedoms is freedom of religion. You are free to worship anyone/thing that you please. If it suits you, to worship a rock..well by all means go ahead. People have many different faiths, and many different ways of worshiping. Or none at all. People go their whole lives with setting foot in a church. And that's ok too. 

But you see, when I start telling another person what to do based on the tenets of my faith it's really not freedom of religion. I'm telling them they HAVE to follow what I believe. And that's when you start losing the freedom to practice religion (or the lack thereof) of your choosing. And just like taking away women's health care choices sets a precedent, taking away religious freedoms set a precedent as well. Neither of those paths is a path I want to travel down. It's a slippery slope and I'd rather keep my freedoms and choices intact.

Now, to address what I'm sure a lot of my readers are thinking. "You're still killing babies! They don't ever have a chance to enjoy the freedoms and choices you're speaking of"

Well...I look at it like this. Outlawing abortion will NOT solve the problem. Do the laws against murder stop murderers? Or the laws against drugs stop drug dealers or users? And let's face it, jail is no deterrent to ANYONE anymore.

Education is key. Teach young mothers how to raise children and that they're not alone. Give them easy access to resources to help them and don't make them think they're being backed into a corner and abortion is the only way.

And THAT is my two cents worth :)

Local FORCE Article

Here is the article that Irene Rodda and I were interviewed for regarding the local FORCE group!

FORCE Brings Cancer Previvors Together

CNN IReport

Since it's Breast Cancer Awareness Month (AKA Let's stick a pink ribbon on anything that'll stand still month) CNN iReport has featured an assignment regarding breast cancer genetic testing. This is a great place to read loads of previvor stories (the total when I last saw it was 26, including yours truly) Check it out!


Tested for the breast cancer gene?