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.

Thursday, December 30, 2010

No words....

There are absolutely no words to describe the stress and anxiety that unexpectedly creeps up on me about having my surgery in April. I wish I could tell someone "THIS is how I feel" but I can't. I feel like anything I say about it, anyway I describe it, is inadequate. I love and appreciate each and every person who supports me and cares about me more than anyone will ever know. But, this is something that I think no one would truly understand unless they've been there. (I know several of my followers are in the exclusive little club of having PBMs so they can relate).

I've always felt like I need to be the strong person. Not just in this, but in every aspect of my life. It's almost as if I don't like to burden people with my feelings.I feel like other people have other stuff to worry about it and they don't need to add my problems to the list. I've always been very private with my innermost thoughts and feelings...this may come as a shock to people that know me haha. But I've never really shown when I'm mad, frustrated, or upset.

When I hold all of this inside, I eventually reach my breaking point. I bottle up so many things inside and eventually SOMETHING has to come out. I can only hold so much stuff in. Then, unfortunately I tend to release something, to say something without thinking. It's almost as if I pick the most hurtful way to lash out, almost so someone can feel as bad as I do.

I almost didn't want to publish this blog, or make it available for people to read on Facebook. I'm almost scared people will stop being my friend when they read this blog. And seriously, I feel so vulnerable right now. That's a weird, strange feeling for me to feel too. That's probably another reason why I keep everything inside....I HATE when people see that I'm vulnerable.I like being this strong, fun loving, laid back person who can handle anything. But truthfully, I'm not. I want to be, I even think I may be sometimes. That's why I adore the quote "Courage is the art of being the only one who knows you're scared to death" I feel like that describes me PERFECTLY!

Some people may read this and think that I'm having second thoughts. I'm not. I'm still very firm in my decision. I've never once second guessed myself and even started to pick up the phone and call the doctor and cancel the whole thing. I wish I could run away and hide and make this not happen to me. But truth of the matter is, that won't take away my risk. I'm not willing to play russian roulette with my life.

I think I'll wrap it up here, before anyone I know reads this and has me committed to the nuthouse. I'd like to leave you with one final thought,

"God bless the makers of Xanex"

Michelle

Wednesday, December 29, 2010

Be careful what you wish for?

So I had this thought that I figured I would share on my blog. I've always been a big chested girl. And my breasts grew before anyone elses. So I was always the girl in my class with the biggest chest. And trust me, it got me alot of unwanted attention. I used to feel so uncomfortable because I felt like sometimes I was all boobs to people you know? I used to say frequently "I hate my boobs. If I had a chance, I'd cut them off" Well, I guess God was listening. Sometimes I think God has a sense of humor, you know? It's one of those ironic things I guess.

Recently, I have been having a lot of pain from where I had the excissional biopsy in November. It was the first time I've had a biopsy towards the bottom of my breast and it hurts SO much more. And it happens to be on the side I sleep on, so I have to wear a sports bra when I sleep for the extra padding. And I've had so many lumps removed that I'm starting to have "sinkholes" in places (for lack of a better word....I can't think of any other way to describe it but hopefully you got the idea =). One thing that makes me feel a little better about the surgery is that "my girls" will definetely look better. I mean, there are a million other reasons to have the surgery other than the athestic part but it'll be nice not to look down and cringe.

One thing I'm not looking forward to is dealing with the pain. I know I can handle it, but lets face it- if I feel residual pain from my surgeries NOW how will this pain feel? My plan is to be as physically active as possible....even if it's just going for long walks. Moving around really does make me FEEL better too, you know? I want to be in the best shape possible before surgery too. It'll give me something to focus my energy on in the coming months AND I really should shape up....if I don't I'll look all mis proportioned with a smaller chest =)

I need to call my doctor back tomorrow and find out if they were able to get my surgery scheduled. I know they'll probably get sick of hearing from me...but luckily I'm pretty sure this doctor likes me so I think they'll put up with me.

It's so wet and rainy here. I'm currently curled up with a Snuggie and the new Dexter book. We were going to go to the movies but everyone has decided to stay put.

Good night!

Michelle

Sunday, December 26, 2010

Merry Day After Christmas

For as long as I can remember, I've always felt a sense of sadness on December 26. The season that was built up from November 1-December 25 is GONE. Now it's back to normal. Only a little while longer left on break and before I know it, it'll be back to school...on SATURDAYS (yikes...it makes me cringe to think about it).

I hope everyone reading this had a wonderful and blessed holiday. Aside from the trauma of my grandmother going to the hospital, it was a great Christmas. For anyone who doesn't know, my grandmother was taken by ambulance to Baptist Desoto on Christmas Eve morning. She is in ICU on a ventilator because of lower lobe pneumonia. The doctors seem pretty optimistic about her recovery and last I heard hopefully the ventilator will come out tomorrow. I saw her for a little bit last night and I think she knew I was there. She was in and out of consciousness and was aware of people in the room. Even if she didn't know it was me, I'm glad she got the sense of someone being there with her.

An unexpected gift that Santa brought was snow on Christmas day! Granted it didn't stick, but it was the first time it snowed on Christmas Day in Memphis in 100+ years. So that was fun :)

Now, in just one short week comes 2011. Everyone is trying to decide on resolutions, whether it's too lose weight, quit a bad habit, save money, etc etc. The list goes on and on. I've been doing some thinking and I think my resolution will be to get through everything thats coming in 2011 with as much grace and courage as possible. Knowing that the distraction of the holidays is gone, I have nothing keeping my mind from thinking about my upcoming mastectomy. I called the doctor and told her that I wanted to go ahead and schedule it.  I need a date to concentrate on, something to mark on the calendar and count the days until it comes. I know it'll be in late April because my last final is April 16.  I just think it'll make my anxiety a lot easier to handle if I have something concrete that I can think about instead of it being some unknown, looming dark cloud hanging over my head..

Another reason for wanting a date is because I want to know if it's at all possible for me to go to MDA Summer Camp this year. I want to go SO badly, but it'll be ultimately up to Dr. Cooper whether or not I can. If I schedule my initial surgery in April, I'll still be going through the expansion prcoess when camp is going on. And I don't know what my doctor will think about me going out of town then. But we will see.

This may be a good time to briefly explain the whole mastectomy process I'll be undergoing. I think a lot of people don't know how it's done. When I have the initial surgery, the surgeon (Dr. King) will remove all breast tissue. The the plastic surgeon (Dr. Cooper) will insert tissue expanders in it's place. Then for a period of about 4-6 weeks (I think that's the time frame she said) I'll go to Dr. Cooper's office to have them filled. (She'll basically run a magnet over the port and then insert a needle into it and fill them up. Once they reach a size that I'm happy with, I will have the exchange surgery. It's an outpatient procedure where they swap the tissue expanders for implants. Later, if I so choose I can have nipple/areola reconstruction. And that is the whole procedure. Pretty straightforward right?

For the time being, I'll try to keep occupied as much as possible. Hopefully my posts won't become too crazy in that time period as I try to stay sane =)

Happy New Year!

Michelle

Saturday, December 18, 2010

Bye-Bye Girls, it's the end of the road

It's so hard to believe but in a week's time, Christmas will be all but over. WHAT?!? I still have presents to buy and wrap, deserts to make, etc etc. Tonight I got to visit with my great aunt from Texas and her grandchildren. I'm sure this makes them related to me in some way, but I'm too tired to figure it out. The point being is that when I saw how excited they were about Christmas and so full of life and energy it made me happy to see (and a little tired as well). They haven't seen Santa yet, so we're going to make a trip to the mall tomorrow. (I'm SO excited). Amazingly enough they said they wanted to be surprised tomorrow so they don't know what we're doing. (They're 5 and 6 so I'm thinking the chances of them reading my blog are slim to none).

My aunt is in town to visit my grandmother. It breaks my heart to see that the once strong, fiery woman I knew is so sick. Granted, she hasn't had chemo treatments for awhile so she's stronger now than she was before but I know when she starts taking them again that she'll go back to feeling weak. She has her moments when I can see the old personality coming out and that makes me smile.

One positive thing that is coming from her sickness is that it's helping to reinforce MY decision to have the PBM. I'm stopping myself from having to go through what she's going through. I'm not letting cancer win. I'm exercising options that my grandmother didn't have available to her. And I know she's proud of me for doing it.

I still have times when I'm sad about it. Recently, I was at a baby shower and all of the women started talking about breast feeding. I sat there listening to their conversations about how much it hurt, etc etc and I wanted to scream "AT LEAST YOU HAD THE OPTION" But, being the nice person I am I just sat and nodded and smiled. It's weird, I never had strong views either way about breast feeding babies, but now I know that it's going to be out of the question it makes me sad.

That thought has stayed with me ever since that night but tonight after seeing those kids run crazy around my parent's house I realized that while I might not be able to breast feed any children (right now these children are metaphorical...I have NO plans to have children while I'm in school) I'll at least be around to HAVE them. And that's the important part right? I want to make sure that when I bring my metaphorical children into the world that I'm doing everything in my power to ensure that I'll be around to take care of them.

I follow a few blogs on here from other young women that have had PBM's and the after effect. One was about an "anniversary/birthday" since it's been one year since her surgery. And it made me realize that this is a HUGE LIFE CHANGING EVENT. One that DESERVES a celebration. Because I'm choosing to live. No matter how messy, sad, and stressful life becomes, you only get one. And I have chosen to live it to the fullest and in the best possible way I know how.

So, I'm sorry breasts, girls, ta-tas, hooters, etc. That means you and I have to part ways. It's been fun while it lasted, but trust me it's YOU not me. This is the end of the road for us, but I'll always remember the times we've had together. And I will remember in all of the years I'll get of my life because you'll be gone for good. I know we have a few more months left together so I know you'll beg and plead to stay and try to get me to take you back. But I will not listen, because this really is the best for both of us. Please be on your best behavior and I'll make sure that when the time comes the split is painless and quick as possible.

Sincerely, Michelle

Friday, December 10, 2010

CRAZY Week!

So this week has been a pleothra of craziness (pleothra...that's a cool word right? HA HA My first boss called me a pleothra of knowledge and I've loved the word ever since then.). Work, school, and LIFE in general has been a little nutty this week. I'm glad to say that my hardest exam is over and only have one more on Monday night.Then I will THROUGHLY enjoy the two weeks before the Spring trimester starts at school.

I had my first breast reconstruction consultation today. I really like Dr. Cooper and have an all around good feeling about the surgery now. Dr. Cooper is very young though....probably mid 30s? But I like that. I feel like she better understands the need for athestics, more than an older doctor who's been operating for years. And she's worked with Dr. Hollabough who did my thyroid surgery when I was 8. So did Dr King, the other surgeon who would be doing my mastectomy. That's like a sign from God right?

I asked her about the anxiety I'm feeling about the surgery. She really understood and said that they recommend that their patients take Xanex. So she gave me a prescription for it. I feel weird admitting that I'm not some strong superwoman when it comes to medical issues and surgery. But I realize it's ok not to be the strong one sometimes and lean on other people or things. So I guess my journey to my  surgery begins. I'll try to keep busy with school, work, going to the gym, and anything else that keeps me occupied. Right now I'm enjoying my lazy Friday night with Papa Johns and Fred Claus.

Good night!

Thursday, December 2, 2010

Christmas Break...so close yet so far....

I'm at the roughest time of the semester. Finals start tomorrow and I'm faced looking at my grades thinking "shoulda, coulda, woulda." Don't get me wrong I'm not a bad student by any means. There are just some things I wish I had done better. My teacher told me to stop stressing out about it, that I had been through alot this semester so it was understandable that my grades weren't fantastic. But they are passing so I'm not complaining too loud.

And yes, I should be studying right now. However, I needed a break. And the latest debacle with my insurance company is not helping. They sent me a letter saying that they denied my claim for my breast MRI I had back in October because of the fact that they couldn't "clinically justify" it. Then when I called to start the dispute process they told me it wasn't denied but that the claim had been ran through twice. Then they called me again and said it wasn't ran through twice, that it was approved but some of it applied to my deductible. They should really all get on the same page. I can only imagine what they'll be like when I actually  have my mastectomy.

I'm scheduled for my first plastic surgeon consult a week from tomorrow. I'm so nervous about it! I just have so many questions swirling around in my head that I'm scared I'll forget to ask something. I have never once second guessed my decision to go ahead with the surgery but I'm having some anxiety issues about it. Going on the FORCE website; on the message boards and chat rooms, I've learned that anxiety is VERY normal when you're counting down to the surgery. I've been advised to either try therapy or Ativan (anti-anxiety meds). Since this doctor apparently specializes in mastectomy reconstruction I'll ask her what she suggests. It's so hard to put a name to what I'm feeling. Most of the time I'm fine, but other times I'll get really sad and cry for no reason. Its like I have a split personality. Part of me is strong and can handle anything. "This is not your whole life, just a chapter in the story that is your life" is my mantra,. Then theres another part of me who wants to curl up in the fetal position, crying and saying "Woe is me" That part prevails until strong Michelle slaps the weaker part and gets them to shut up.Hopefully after the appointment with Dr. Cooper next week I'll start to feel better. Because I've got a long way to go before April!

And now I must get back to studying or BOTH parts of me are liable to start crying when I see my grades!

Until next time;

Michelle

Monday, November 22, 2010

It's the most wonderful time of the year!

I admit I LOVE the holidays. Really LOVE them! Around October, I start getting this giddy feeling because I know all of the holidays are coming up. Then in November I get really excited, because that means Thanksgiving and my birthday. And then comes the best one... CHRISTMAS! I honestly turn into a nerdy little kid. I listen to Christmas music in my car and at work. I love decorating the house. I read Christmas books and watch Christmas movies. And I love getting gifts for people (bet you thought I'd say I love receiving them...which is nice as well =) ).  I really try to take the time to make each gift meaningful. So whether or not the receipent likes it, I at least feel good about the fact that I spent a lot of time and effort planning for it! Even the fact that finals are coming up doesn't really damper my spirits.

But, I admit this holiday season is a little bittersweet. Because I've started thinking of EVERYTHING in terms of "This is the last one with my real breasts" Stupid huh? (That was a rhetorical question. If you answered yes, then my answer to you is that it's my blog and I can be stupid if I want to. Ha ha). Seriously though, I'm thinking this is my last Christmas with my real breasts, this is my last birthday with my real breasts, this is the last season of all of my favorite TV shows with my real breasts. Truth be told, my boobs will only live to be 27. Which is a little sad. But on the other hand, the other BIGGER hand, I'll live much longer as a result. My breasts have to die for me to live...... ok I think I'm going crazy for real. I honestly can't believe I just said that. But I guess the whole point of this blog is to get my feelings out. Uncensored. And for those who know me, you know I'm slightly goofy already.

Just to keep you updated- my plastic surgeon's appointment is December 10. Then I guess I get to just live my normal life until finals of the Spring semester. Hopefully I won't completely crack up before then.

Well, I'm off to get some studying in. Happy Thanksgiving!

Michelle

Tuesday, November 16, 2010

First Steps

Well, today was my post-op follow up appointment. The doctor reminded me of my plans (as if I could forget!) and said to call him when I was out of school in the spring and we could get the ball rolling. I told him that I wanted to see the plastic surgeon now, so I can go ahead and start planning things. He seemed pleasantly surprised that I'd taken the proactive approach to it and immediately left a message for the plastic surgeon. His nurse is supposed to call me tomorrow to let me know when I can set up an appointment for a consult.

I did some research on the plastic surgeon (ok I just googled "Laura Cooper-plastic surgeon-Memphis TN) but saying I "did some research" sounds more mature :) She's younger (mid 30s) and just starting out. It says she's worked with "world renowned innovators in the field of reconstructive breast surgery." It didn't mention any names, but that was the terms that the article used. It also says that she employs the latest technology and techniques and strives to exceed her patients expectations. She comes very highly recommended by the doctor. I like that she is younger, which means that she will be more open to using technology and techniques (I'm dying to ask her about Alloderm, the one step reconstruction.). It also means that she'll understand the importance of "natural looking post-reconstruction breasts" (The article said that as well). So I'm looking forward to our appointment!

It IS a little scary in the fact that I feel like I have taken the first step in this whole lengthy process. No turning back now! I'm trying to go ahead and research "supplies" I'll need after the PBM. I've read about special camis, bras, and a really cool pillow. It's called "rest easy pillow" and it's for post-mastectomy patients who are "side sleepers."  Honestly, that was something that was freaking me out a little (I can ONLY sleep on my side, not on my back). I feel like that was an answer to prayer!

After I got home from the doctor, I decided to go to Zumba tonight. It was the first time that I've done anything remotely resembling excerise since my surgery two weeks ago.  I was excited but now I'm really feelimg it. I will be going to bed soon!

After I got finsihed with Zumba, I went to my parents house to trim and file my grandmother's nails. I feel like she is getting depressed (or deeper into it) and I only hope my little visit gave her some pleasure and happiness. For anyone who doesn't know, my grandmother has inflammatory breast cancer. She does get lonely, so hopefully I helped make her happy for a little while at least!

Well after all this excitement for one day, this is one tired girl! I'd like to sign off with a quote that I read on a sign at Race for the Cure and absolutely loved:

"Courage is the art of being the only one who knows you're scared to death" (seems to REALLY apply to me!)

Good night!

Saturday, November 13, 2010

And so it begins

Ok so here goes nothing. I had heard a lot about this blogging thing so I wanted to give it a try. I've heard it's a stress reliever so I figured I'd give it a shot. If you read my profile (or know anything about me) you know I'm in nursing school and work a full time job. If THAT'S not stressful enough, I get to add some crazy medical issues to the mix. To make a long story short, I have Cowden's syndrome which is a genetic mutation of the P10 gene (the tumor supressor gene). I've had benign tumors just spring up my whole life. (I think the surgery I just had brought me up to 12. I've lost count). The most serious was the brain tumor. I honestly think that issue is under control (ok I admit I just knocked on wood. Can never be too careful).

Another thing that my wonderful genetic condition gives me is an increased risk for breast cancer. A REALLY increased risk of breast cancer. So much so that I've had four (yes FOUR) doctors tell me I should seriously consider having a prophylatic bilateral mastectomy (I'll call it a PBM from now on. Because those are too big of words to type more than once.) In layman's terms, they recommend that I should remove my breasts and have implants instead. At first I thought that they were insane. I wasn't cutting off ANYTHING that didn't have cancer.I mean come on, their my breasts! They're part of what makes me, me. So I stubbornly told the doctor that I wanted to do the "increased surveillance" option instead (a mammogram and breast MRI every 6 months).

Fast forward to August of 2009. They found a suspicious lump in both breasts and the results of the biopsy that they did said that atypical cells were found. (these are not cancer cells, but many people call them "pre-cancer") They removed the lumps, and the doctor said that I needed to prepare myself for the cancer diagnosis. When I went back to get the results, everything was clear! The doctor said if I wanted to continue my surveillance, then that was fine since I'd gotten a good report. Fast-forward to October 2010. We began the same routine that was all too familiar. When I went for my appointment to schedule the surgery the doctor said "Will you please have the PBM so I can stop worrying about you?" I feebly told him that I didn't want to take that much time off of school to recover. I told him that April 2011 was the best time for me to have a big surgery. I am taking the summer semester off of school and would have more time to recover. He then told me that he was ok with that, but made me promise to move the PBM up if the biopsy showed anything. I agreed and then he left me to get dressed. When I was getting dressed I looked down and felt a little sadness for my breasts, but relief that I was being proactive and making sure I didn't end up with cancer. So, not only do I have Cowdens, I also found out my biological mother has breast cancer which elevates the risk. AND this made the second time that weird cells were found which elevates your risk as well. This put me in the "not if but when" category (my doctor's words).

I had the surgery about 10 days ago and the results of the biopsy were clear. I'm going to see the doctor Tuesday and he'll make me an appointment to see a plastic surgeon. And then the waiting until April starts.

The reason I started this blog is because I needed a way to relieve some tension in my head. I know beyond a shadow of a doubt that I'm making the right decision but that doesn't make it any easier. Hopefully, writing about it will make me feel better. Even if no one ever reads it, I'll feel better when I write down everything between now and April. And I'll try to write about other stuff too, not just my boobs =)

And I just realized that it's not even 10 pm, and I'm in my pjs in bed on a Saturday night. I'm pretty sure I'm the oldest 26 year old ever!

Good night!