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.

Wednesday, December 26, 2012

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



Friday, November 9, 2012

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!!!!!!!!!!!!

Sunday, October 28, 2012

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 ;)


Wednesday, October 17, 2012

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 :)




Thursday, October 11, 2012

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

Friday, October 5, 2012

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?

Monday, October 1, 2012

Cowden's Syndrome

I'm sure the majority of you reading this either had one of two reactions:

1- What? Who's Cowden and why is Michelle writing about his syndrome?

or

2- I vaguely remember that's why Michelle had a mastectomy


Cowden's Syndrome affects approximately 1 in 200,000 people. Yep, if I was going to get something that rare I'd prefer it to have been something involving the words powerball or lotto but this is what I got.

This is what I got from MD Anderson's website about Cowden's:


Cowden Syndrome 
What is Cowden syndrome? 
Cowden syndrome (CS) is a genetic condition, meaning that it can be passed to an individual 
from their parents. A person with CS has an increased risk to develop a variety of benign and 
cancerous tumors. Individuals with CS are at increased risk to develop thyroid cancer and 
women with CS are also at increased risk to develop breast cancer and uterine cancer. Many
different benign (non-cancerous) tumors are also common in individuals with CS. 
Cowden syndrome is sometimes called PTEN Hamartomatous Tumor Syndrome or PHTS.  
There is also a rare type of CS that is called Bannayan-Ruvalcaba-Riley Syndrome.
What are the signs and symptoms of Cowden syndrome? 
Many signs and symptoms can be associated with CS. However, CS affects each person 
differently and most people with CS have some of these symptoms, but not all. Symptoms 
include: 
• Learning disabilities, autism, and/or mental retardation
• Large head size 
• Certain types of lesions or papules (bumps) on the skin (a dermatologist can recognize these)  
The most common are:
− Trichilemmomas on the face
− Papillomatous lesions, particularly if they are on the face and/or mucous membranes 
(such as gums).  This can include a “cobblestone” appearance of the tongue or gums.
− Keratoses (hard growths on the skin) found on the palms of the hands or soles of the feet 
• High risk of developing tumors, both benign and cancerous 

And there you have it. Every single health problem I've had (excluding tonsils/adenoids) is linked to CS. In fact, I dare say that without CS in my life, I may have only had that one surgery. Not the approximately 20 something I've had. Rather depressing don't you think?

Except, it's not.

I was diagnosed with CS when I was 19. This was after I'd had "more surgeries than the average person" as my neurosurgeon put it. In fact, it was his idea that I get tested for CS in the first place. Did I mention that he's pretty smart?  And he pretty much knows the inside of my head better than anyone- I've had a total of 4 brain surgeries ;)

So when I was 20, six months after my first brain surgery, I got the nice diagnosis of CS. A bunch of paper was shoved my way, with instructions on how to manage my risk. I actually got my genetic counselor to see me the most recent screening guidelines for CS and it looks identical to the one I received initially.

PTEN (Cowden) – NCCN recommendations
Cancer Site (lifetime risk)
Management
Age of Initiation
Breast (25-50%)
Annual mammogram and breast MRI
Clinical Breast exam every 6 months
Discussion of prophylactic mastectomy
25y
Uterus (10%)
Annual pelvic exam and Pap
Review signs and symptoms of cancer
Discussion of prophylactic hysterectomy
18y
18y
Thyroid (10%)
Baseline thyroid ultrasound
Consider annual thyroid ultrasound vs physical exam
18y
18+y
Mucocutaneous –benign (99%)
Annual dermatologic exam
10y
Colon (9%)
Consider colonoscopy every 5-10 years
35y


Easy-peasy. I haven't quite reached the magical age where they shove a camera up my bum but all these other things I was getting screened for anyway. Except the dermatologic exam....that's my bad. I do get an annual physical exam so I would hope they would speak up if they saw something unusual. But I will be searching for a dermatologist.

The rest of the things, I'm already getting checked for anyway. For me, CS wasn't a death sentence- it really wasn't something to get angry about. It just explained all of my problems, without me thinking I was being punished for wrongs I had done in a past life. In fact, as I told a reporter today (who was interviewing me for a story about our local FORCE group), I see a genetic mutation as more of a gift. I have this information, and I know what I need to. Cancer doesn't have to be a big, scary unexpected thing. I have the tools to stop it before it happens.

I did notice on the Internet there were some talks from people about CS patients needing to be screened for kidney cancer. What the what? That's not on my handy dandy guide to CS. So I asked my genetic counselor what she thought. Her response? There's only a small fraction of CS patients that were diagnosed with kidney cancer. Kidney cancer is a very slow growing cancer so as long as I get a full chem panel/blood work up then it will catch any abnormalities. *WHEW*

So I'll just bide my time until I'm 35 and keep doing what I'm doing. It really feels like CS is a manageable condition to me. I don't really feel like my life is changed. In fact, until I started with all of this PBM stuff, I really didn't think of it much. It's just part of who I am. Michelle Renae Malone wouldn't be Michelle Renae Malone without this crazy Cowden Syndrome that no one has ever heard of.

Then, why be involved with FORCE and support groups for women having mastectomies? THAT is a cause that's dear to my heart. Whether people are affected by HBOC through genetic mutations, family history, or other factors. Having any type of preventative surgery is a big deal. I know I wouldn't have made it through without support and I  want to offer that to other people.

I'd like if other people knew what Cowden's Syndrome is though....to spare me from the thoughts I see dancing across nurses' faces 

"Is she making this up?"

I almost want to scream:

"No. No I'm not. But it'd make a hell of a book if I did make it up" 


Friday, September 28, 2012

And another one

So if you read my last post, you know I had revision done a few weeks ago. Well, true to form, I now have a nice shiny infection in my left foob.

Fan-freaking-tastic.

I did the whole bury my head in the sand thing, and I finally relented and went to the doctor yesterday. Dr. Cooper said that while she isn't thrilled, she isn't horrified either. Hopefully 14 days of Levaquin and daily scrubs with rubbing alcohol will do the trick. If not... well I'm not allowing myself to think that far ahead.

But now I'm back in the world of weird appetite, unrelenting nausea, and nightly doses of Phenagren so I can sleep. Hopefully all this nonsense is worth it!

Now, on a happier note, you may have noticed the widgets on my website for the cafepress.com Memphis FORCE store. Check it out! We've got tons of products and adding more. The store is in the very early stages so there'll be some good updates coming up, but we are open for business! All proceeds benefit FORCE.

cafepress.com/forcememphis

Wednesday, September 19, 2012

One step at a time

Well I went in Friday for my first revision. It was local anesthetic so I did get to eat and have my coffee (thank the Lord). I'd had to file FMLA paperwork for my job (and I'm still anxiously waiting to see if my doctor's office gets it sent back on time). so I felt like a big fat pain. Apparently my PS's office is in the midst of converting to electronic medical records, so they were all frazzled. I hated to bother them with my paperwork, but I guess you gotta do what you gotta do.

Dr. Cooper came in and looked over my foobs, took pictures and marked me. Her nurse brought me some Valium and Lortab and took me in the surgery suite to lay down. They came in and started working and soon it became apparent that I have very sensitive skin under my arms. When Dr. Cooper got to stitching up under my arms I felt a stick and said "OW" She immediately stopped what she was doing, looked up and said "Ow?" When I told her I could feel it, she gave me more local. And then more, because I was still feeling a little bit. She finally asked if I could stand it because she wanted to save local to go on my left side.
Needless to say, with the cutting of the dog ear (she literally cut a big hunk of loose skin. I saw the strip...it was gross and fascinating at the same time) I needed LOTS of local and could STILL feel the pain.

After she was done with the dog ear, she looked at me and said, "Why don't we stop and finish up later?" when I started to protest, her nurse chimed in "Well, if we give you too much local, we could stop your heart." *They are very considerate* Then I hesitantly asked the question that was weighing on my mind. "Can I get tattoos next time?" She looked at me for a second and said "Ok, we can do that" SCORE! We agreed that I'd call when I was ready and get the other side finished and tattoos. YES YES YES! So now I just have to schedule that. I was hoping to have it done before the FORCE Conference in October, but now I'll just be happy to have it done before the end of the year.

For those that are interested, besides trimming the dog ear, she basically lifted my implant. She used heavy-duty stitches (p something cutaneous) and stitched it to the covering of my rib cage. And I was thrilled that she said "And luckily on you I can feel your ribs" YAY I'm not morbidly obese after all :)

After they finished up she sent me on my way with a Lortab prescription (sadly no Valium). And I was back in the world of struggling to find a comfortable position in bed that didn't make me feel like I was being stabbed in the side. *sigh* I mentioned to Mike that I couldn't get comfortable and he suggested I sleep in the recliner again for a few nights. I shuddered, forcefully said "NO" and that it would be a cold day in hell before that happened.

Oh and there's one tidbit I forgot to mention: I have to wear a bra.

An UNDERWIRE bra

For TWENTY THREE HOURS A DAY! (da da DAAA)

So that means that unless I only sleep an hour, I'm stuck in this torture device all the time. What's the big deal? you may be thinking. Well, I haven't worn a bra regularly since my mastectomy. Yes, my mastectomy. That's over a glorious year with no vise like contraption slung over my shoulders.

How long does this torture last you ask? 6 LONG weeks!

*BIG SIGH*

The reasoning for this is not to make me curse my doctor's very existence, but to make sure my implants stay in place. Apparently if they are not supported initially, they could sag and have to be lifted up again.

Thankfully, the initial pain is subsiding and I did get to rest on my sides last night for awhile. So maybe this whole over the shoulder, boulder holder thing won't be too bad *knock on wood*

I just need to get past the fear lurking inside me of having something go wrong. I'm checking all the time, making sure things don't get infected, pulled, or otherwise messed up. It's not that I'm a glass half empty kind of person, but I've been around this block a few times.

Things aren't all Lortab and torture devices though. The FORCE group is starting to take off AND Irene and I will be attending conference soon. I'm very excited about that!

There are some major work/school related stressors, but I'm trying to get through them one step at a time. One foot in front of the other..because that's all you can really do right?

Thursday, September 6, 2012

Decision Making

I know I've spoken about it briefly before out here in the blog-o-sphere, but I felt the need to talk more about the subject.

Decision making.

I've never been one that's good at making decisions. I have always just went with what made everyone the happiest. Just ask anyone who's ever gone to lunch with me. I hem and haw with "Well whatever you want" or if I get brave enough to actually choose a restaurant I quickly amend my choice by saying "If that's ok with you" and generally go along with whatever the other person wants. However, in my life so far, I've been forced to make a few pretty life altering decisions as of late.

1- I decided to become Catholic. I grew up Baptist so my decision to convert was not well received. The only Catholic in my family is in my extended family and lives in San Antonio TX (Shout out to my great uncle :D ). So, needless to say, I did not get much support in my decision. I've told this story to several people before- I was driving home from my Baptist church one day with my sisters and we were talking about how we were becoming unhappy in the church. The thought of switching to another Baptist church was an exhausting prospect but I knew I wanted to be in a church I was happy at. We just happened to drive by what would later become my home church. I turned to my sisters and said "What about trying that church next week? I've never been to a Catholic church" and we agreed. The next Sunday at 10 AM we walked into Mass. My sisters were not that impressed but I was in awe. I can't describe, except I could almost see God smiling and nodding in approval. A feeling came over me, and for the first time in my life I heard God speak to me. "This is where you belong." I finally got what I'd been missing in my high school years, when other people my age would talk about God speaking to them. I finally understood. I got the reaction I expected from my family and people at the Baptist church, so I stayed away from the Catholic church for awhile. I remember one Easter morning being at the Baptist church, looking around and feeling so unsettled and uncomfortable. The next Sunday, I went back to Mass, three weeks later I spoke to the priest about joining RCIA (Rite of Christian Initiation of Adults) and by the next Easter, I was receiving Confirmation and First Communion. I'm still very grateful to those who supported my decision and came to see one of the most important events of my life. And I've come to terms with those who didn't support my decision, but have come to realize that I'm very happy :)

2- I decided to have my PBM. I was terrified of having a mastectomy, and my stomach would drop everytime Dr. King would suggest it. I thought it was the craziest thing to do, especially when I didn't even have cancer. A mastectomy was something that old women did, not girls in their 20's. But then, I started to realize what my fate was. In the back of my mind, I always thought I'd die from some awful medical problem (morbid but true), so I thought that this was my time and breast cancer would do the job. I mean heck I was living on borrowed time anyway, what with all the brain surgeries and such. But then I realized...I could control my destiny. I could get up and fight back and come out on top. I could outsmart cancer. HMMM... So then, I made the decision. And I never looked back. I've had PLENTY of bad self esteem moments, when I yearn for the feeling I once had in my breasts. When I hear of people talk about breast feeding and realizing I will never be able to experience that. When I'm convinced by some  crazy inner voice that no man can possibly love anyone with fake breasts (I have my irrational moments lol). But then I calm down and realize that everything is ok. My breasts aren't the only thing with nerve endings, I'll actually be around for my childrens LIVES and won't just be some picture that they look at it and their Dad has to tell them stories about Mom..and honestly when has a grown person ever gone back to their mother and said "thank you for breast feeding me." When the time comes I WILL be an awesome, cool, wonderful parent (minus the cracked nipples.) As far as men go...I have a wonderful boyfriend whom I love dearly and I know he loves me too. I'm a very lucky girl :)

3- wait for it....here's my other decision. Life changing, relationship altering (my Dad is going to have a heart attack).....I'm pretty sure I'm a liberal now. Ok I AM a Liberal, democrat, leftie, etc. I've actually really struggled with this. Both of my parents (My father especially) are very staunch Conservative Republicans. My Facebook friends list is riddled with Conservatives (I love you all). This will be the third Presidential election for me to vote in, and I'm kind of sad to say that I voted Republican in the previous two. Not because of what I believe or feel but because that's how my parents voted. Bad I know... but now that I'm the ripe old age of 28, I've started paying attention to what's going on. I've started to form (gasp) my own opinions. How can this be? I have a different opinion than my parents! Without rehashing the issues too much, I'll just say that the Democratic party platform is more align with my own morals, beliefs, etc than the Republican party is. And honestly, I'm uncomfortable with the trend that Republicans have of hating homosexuals. You see...it's easy to hate something that you just read about or see on TV. (And if any of my friends are reading this, and actually know gay people I apologize in advance). I have homosexual people in my life. And they are the sweetest, nicest, best people you'll ever meet. And the love that I see in their relationships and the love they have for their children...I can't look at them and tell them that they are wrong. That they are denied the same rights as a man and a woman simply because of their sexual orientation. I am well aware of what the Bible says, but I also know that Jesus said "Love thy neighbor" PERIOD. So that's what I'm trying to do. Apparently from what I am told, this is a liberal view.

Another liberal view- pro-choice. Over the past few months, I have come to learn that pro-choice simply isn't referring to abortion. Which, by the way, I am strongly against. But, pro-choice encompasses ALL of women's healthcare. And YES women have the right to choose their own healthcare. And the way I see it is this- there is a such thing as freedom of religion. Which means that I cannot force another American citizen to live according to the morals of my religion, since they may not share those same beliefs (this goes for anything not just the abortion issue.) Once again I AM AGAINST ABORTION SO PLEASE DO NOT COMMENT ASKING WHY I SUPPORT IT BECAUSE I DO NOT.

There's several other things that I see eye to eye with the "Dirty Dems" (In my Stephen Colbert voice). Obamacare (I think it can be a good thing), Student Loan Reform , etc etc. So there you have it- I'm putting my "official political stance" out there. Let the attacking and de-friending begin (Actually please don't. Once again, nothing but love for you guys)

One thing I've noticed: people get insanely insane about politics. Oh sweet baby Jesus do they get insane. And I've had attacks directed at ME (Well I guess technically not at ME because I happened to see a comment about my status on someone else's status). There are people on my Facebook friend's list who I can always count on for a rousing debate (you know who you are) and unfortunately there are people on my Facebook friend's list who I can always count on to talk down to and bully me or anyone else who has a different opinion.

And dang it I'll just say it. I like to argue..errr debate. I miss "discussions" around our kitchen table, that got very lively and heated. How we could disagree on so much and no one would get mad at the other. So I'm cautiously tossing my hat into the political ring. I'm paying attention to the issues, forming opinions, scouring news websites and actually being a responsible, voting, American.

And I kinda like it :)

Wednesday, August 22, 2012

Ms. Mary Sunshine has left the building..

...momentarily at least. I was so happy about my last step in my reconstruction. Thrilled really. I couldn't believe I would finally be completely normal. I called the PS office to confirm my surgery date and ask about whether I could go ahead with the areola tattoos (since I'm just getting tattoos and no nipple recon). The scheduler says:

"I think we're going to wait on that and just do the revision this time"

I'm sorry but WTF?

I've been so patient and understanding through this whole process. Did I bat an eye when I got my expander removed? Nope. Did I cry, cuss, and scream when I was told I had to wait super long to get my implants? Nope. Did I throw something at my doctor when she kept me in the hospital longer than expected so I could get IV antibiotics and I missed the Valentine's Day date I was so looking forward to? NO.

So why don't I get a say so now?

Apparently it's just "too much at one time." I'm pretty sure I could handle it but WHATEVER. I guess it's not my decision to make.

I know the tattoos are no big deal. I know that I can get them whenever I want too. I just really want this to be over. I'm struggling to keep my calm and not burst into tears and curl up in the fetal position.

DEEP BREATH......

Monday, August 13, 2012

And we are a GO



YAY! My insurance sent the approval letter for my nipple/areola reconstruction and revision. This is the LAST step of a LONG process! I'm so excited!

Now, just to get the surgery date confirmed and figure out who's going to drive me to the doctor's office. It's an in office surgery and will be under just local anesthesia. The nurse said they'd give me a Valium during the surgery- so it could get pretty interesting =)

I'm pretty happy about this! I can't believe I'm finally so close to being 100% DONE! (Except for yearly checkups :) )

Tuesday, August 7, 2012

Always with me

There are days when I actually forget that I had a mastectomy. It won't cross my mind for days or even weeks now. I've gotten used to what they look like (even though I'm excited about getting my final touch up and tattoos!). So, all in all I'm very happy!

However, occasionally, something happens to trigger those weird feelings. Like there always there, but in a part of my mind I tend to shut of 99.5% of the time. But then the other .5% of the time, it gets open and I start to think. What triggered it this time?

Breastfeeding.

I know I've briefly touched on the topic before. My common sense, smart self says that breastfeeding is not nearly as important as insuring my hypothetical children have a happy, healthy, cancer free mother. I even clearly remember Granny saying to me "Do not worry about breastfeeding. No child has ever died or gotten critically ill from being bottle fed." Which is true. I KNOW that there are ways to ensure having the healthiest, happiest baby possible without having to breastfeed.

But, then my womanly, emotional self comes out. And then I start to experience a feeling somewhat akin to jealousy.These women who are so passionate about breast feeding HAVE breasts. Nice, cancer risk free breasts. I hear women who are extremely pro breast feeding (which is fine by me. It's good to have a cause and I'm in no way knocking what these women do or support.) constantly hammering the benefits of breast feeding and how they get offended by someone saying they shouldn't do it in public. (Again, not knocking these women. I want to make that clear, lest someone begins to think I'm bashing breast feeding). Part of me really wants to say "At least you have breasts to pull out in public." or "At least you have the option to breastfeed." I guess I could pull my foobs out in public, but I'd probably horrify people and get arrested too. If people have a problem with public breast feeding, they'd probably have a problem with my bionic boobs flashing about.

Also, these passionate women who shout the health benefits of breastfeeding from the rooftops, also take it one step further in accusing people who don't breast feed of simply not understanding the benefits. I even heard one person say "Those who say they can't, often don't understand how or why." What? Yes, there are health benefits to breast feeding. But it's not the end all be all of good parenting. I want to sometimes say "Why thank you for saying I'll not be a good parent because I can't breast feed a child. I'm glad I'm starting that far behind on good parenting- better do a lot more to catch up!" And honestly, (thank you nursing school) some people say that breast feeding offers benefits that it really doesn't. But that's neither here nor there.

Do I say any of this? No. I don't even engage in these conversations. But I sit on the sidelines and observe. And at the end of the day I still know I made the right decision. I guess if it were going to be easy, everyone would be doing it :)

Sunday, July 15, 2012

FORCE Conference, losing the dog ears, and FIPPLES

Well, folks it's official. In October, my co-coordinator and I will fly out of Memphis to attend the 2012 FORCE Conference. I am SO excited! I can't wait to start putting faces to names and stories. If anyone reading this is going, let me know! Since we all know each other's innermost thoughts, it would be fun to meet up :)

Things are pretty busy for me lately. I'm at the tail end of my semester, scraping to come up with money to make the final payment on THIS semester (damn you payment plan) and finish strong. Then I'll have *gasp* two and half weeks off before Fall semester starts.

I still have to call my PS to set up my final recon and FIPPLES. WOOHOO. I am SO excited about them. If I remember to call. I swear I've been meaning to do it for weeks now. It doesn't help that I've been sick for the past week and a half with a god-awful cough. I'm definitely getting it done before conference.

One little side note: I've been getting phantom pains like crazy lately. My left foob feels like it's being stabbed repeatedly. *They are not real, they are not real* OUCH

Tuesday, July 3, 2012

Obamacare

I know this is quite a hot button topic right now, and I don't want to go on a tirade about my personal beliefs on the matter. However, I know a lot of my readers are in the same position as me and this bill has the potential to affect ME in many ways, so  I know it has to affect my readers too. I found this link (thanks to my friend) and thought it was a very good, unbiased breakdown of the bill and what it means. You can find the post in it's entirety here. I had no hand in writing this, but I thought it was very well written.

Or here is basically the entire thing, with the exception of some footnotes and comments:


Okay, explained like you're a five year-old (well, okay, maybe a bit older), without too much oversimplification, and (hopefully) without sounding too biased:
What people call "Obamacare" is actually the Patient Protection and Affordable Care Act. However, people were calling it "Obamacare" before everyone even hammered out what it would be. It's a term mostly used by people who don't like the PPACA, and it's become popularized in part because PPACA is a really long and awkward name, even when you turn it into an acronym like that.
Anyway, the PPACA made a bunch of new rules regarding health care, with the purpose of making health care more affordable for everyone. Opponents of the PPACA, on the other hand, feel that the rules it makes take away too many freedoms and force people (both individuals and businesses) to do things they shouldn't have to.
So what does it do? Well, here is everything, in the order of when it goes into effect (because some of it happens later than other parts of it):
(Note: Page numbers listed in citations are the page numbers within the actual document, not the page numbers of the PDF file)
Already in effect:
  • It allows the Food and Drug Administration to approve more generic drugs (making for more competition in the market to drive down prices) ( Citation: An entire section of the bill, called Title VII, is devoted to this, starting on page 747 )
  • It increases the rebates on drugs people get through Medicare (so drugs cost less) ( Citation: Page 216, sec. 2501 )
  • It establishes a non-profit group, that the government doesn't directly control, PCORI, to study different kinds of treatments to see what works better and is the best use of money. ( Citation: Page 665, sec. 1181)
  • It makes chain restaurants like McDonalds display how many calories are in all of their foods, so people can have an easier time making choices to eat healthy. ( Citation: Page 499, sec. 4205 )
  • It makes a "high-risk pool" for people with pre-existing conditions. Basically, this is a way to slowly ease into getting rid of "pre-existing conditions" altogether. For now, people who already have health issues that would be considered "pre-existing conditions" can still get insurance, but at different rates than people without them. ( Citation: Page 30, sec. 1101, Page 45, sec. 2704, and Page 46, sec. 2702 )
  • It forbids insurance companies from discriminating based on a disability, or because they were the victim of domestic abuse in the past (yes, insurers really did deny coverage for that) ( Citation: Page 47, sec. 2705 )
  • It renews some old policies, and calls for the appointment of various positions.
  • It creates a new 10% tax on indoor tanning booths. ( Citation: Page 923, sec. 5000B )
  • It says that health insurance companies can no longer tell customers that they won't get any more coverage because they have hit a "lifetime limit". Basically, if someone has paid for health insurance, that company can't tell that person that he's used that insurance too much throughout his life so they won't cover him any more. They can't do this for lifetime spending, and they're limited in how much they can do this for yearly spending. ( Citation: Page 14, sec. 2711 )
  • Kids can continue to be covered by their parents' health insurance until they're 26. ( Citation: Page 15, sec. 2714 )
  • No more "pre-existing conditions" for kids under the age of 19. ( Citation: Page 45, sec. 2704 and Page 57, sec. 1255 )
  • Insurers have less ability to change the amount customers have to pay for their plans. ( Citation: Page 47, sec. 2794 )
  • People in a "Medicare Gap" get a rebate to make up for the extra money they would otherwise have to spend. ( Citation: Page 379, sec. 3301 )
  • Insurers can't just drop customers once they get sick. ( Citation: Page 14, sec. 2712 )
  • Insurers have to tell customers what they're spending money on. (Instead of just "administrative fee", they have to be more specific).
  • Insurers need to have an appeals process for when they turn down a claim, so customers have some manner of recourse other than a lawsuit when they're turned down. ( Citation: Page 23, sec. 2719 )
  • Anti-fraud funding is increased and new ways to stop fraud are created. ( Citation: Page 699, sec. 6402 )
  • Medicare patients with chronic illnesses must be monitored more thoroughly.
  • Reduces the costs for some companies that handle benefits for the elderly. ( Citation: Page 492, sec. 4202 )
  • A new website is made to give people insurance and health information. (I think this is it:http://www.healthcare.gov/ ). ( Citation: Page 36, sec. 1103 )
  • A credit program is made that will make it easier for business to invest in new ways to treat illness by paying half the cost of the investment. (Note - this program was temporary. It already ended) ( Citation: Page 830, sec. 9023 )
  • A limit is placed on just how much of a percentage of the money an insurer makes can be profit, to make sure they're not price-gouging customers. ( Citation: Page 22, sec. 1101 )
  • A limit is placed on what type of insurance accounts can be used to pay for over-the-counter drugs without a prescription. Basically, your insurer isn't paying for the Aspirin you bought for that hangover. ( Citation: Page 800, sec. 9003 )
  • Employers need to list the benefits they provided to employees on their tax forms. ( Citation: Page 800, sec. 9002 )
  • Any new health plans must provide preventive care (mammograms, colonoscopies, etc.) without requiring any sort of co-pay or charge. ( Citation: Page 14, sec. 2713 )
1/1/2013
  • If you make over $200,000 a year, your taxes go up a tiny bit (0.9%). Edit: To address those who take issue with the word "tiny", a change of 0.9% is relatively tiny. Any look at how taxes have fluctuated over the years will reveal that a change of less than one percent is miniscule, especially when we're talking about people in the top 5% of earners. ( Citation: Page 818, sec. 9015 )
1/1/2014
This is when a lot of the really big changes happen.
  • No more "pre-existing conditions". At all. People will be charged the same regardless of their medical history. ( Citation: Page 45, sec. 2704, Page 46, sec. 2701, and Page 57, sec. 1255 )
  • If you can afford insurance but do not get it, you will be charged a fee. This is the "mandate" that people are talking about. Basically, it's a trade-off for the "pre-existing conditions" bit, saying that since insurers now have to cover you regardless of what you have, you can't just wait to buy insurance until you get sick. Otherwise no one would buy insurance until they needed it. You can opt not to get insurance, but you'll have to pay the fee instead, unless of course you're not buying insurance because you just can't afford it. (Note: On 6/28/12, the Supreme Court ruled that this is Constitutional, as long as it's considered a tax on the uninsured and not a penalty for not buying insurance... nitpicking about wording, mostly, but the long and short of it is, it looks like this is accepted by the courts) ( Citation: Page 145, sec. 5000A, and here is the actual court ruling for those who wish to read it. )
Question: What determines whether or not I can afford the mandate? Will I be forced to pay for insurance I can't afford?
Answer: There are all kinds of checks in place to keep you from getting screwed. Kaiser actually has a webpage with a pretty good rundown on it, if you're worried about it. You can see it here.
Okay, have we got that settled? Okay, moving on...
  • Medicaid can now be used by everyone up to 133% of the poverty line (basically, a lot more poor people can get insurance) ( Citation: Page 179, sec. 2001 )
  • Small businesses get some tax credits for two years. (It looks like this is specifically for businesses with 25 or fewer employees) ( Citation: Page 138, sec. 1421 )
  • Businesses with over 50 employees must offer health insurance to full-time employees, or pay a penalty.
  • Insurers now can't do annual spending caps. Their customers can get as much health care in a given year as they need. ( Citation: Page 14, sec. 2711 )
  • Limits how high of an annual deductible insurers can charge customers. ( Citation: Page 62, sec. 1302 )
  • Cut some Medicare spending
  • Place a $2500 limit on tax-free spending on FSAs (accounts for medical spending). Basically, people using these accounts now have to pay taxes on any money over $2500 they put into them. ( Citation: Page 801, sec. 9005 )
  • Establish health insurance exchanges and rebates for the lower and middle-class, basically making it so they have an easier time getting affordable medical coverage. ( Citation: Page 88, sec. 1311 )
  • Congress and Congressional staff will only be offered the same insurance offered to people in the insurance exchanges, rather than Federal Insurance. Basically, we won't be footing their health care bills any more than any other American citizen. ( Citation: Page 81, sec. 1312 )
  • A new tax on pharmaceutical companies.
  • A new tax on the purchase of medical devices.
  • A new tax on insurance companies based on their market share. Basically, the more of the market they control, the more they'll get taxed.
  • The amount you can deduct from your taxes for medical expenses increases.
1/1/2015
  • Doctors' pay will be determined by the quality of their care, not how many people they treat. Edit: a_real_MD addresses questions regarding this one in far more detail and with far more expertise than I can offer in this post. If you're looking for a more in-depth explanation of this one (as many of you are), I highly recommend you give his post a read.
1/1/2017
  • If any state can come up with their own plan, one which gives citizens the same level of care at the same price as the PPACA, they can ask the Secretary of Health and Human Resources for permission to do their plan instead of the PPACA. So if they can get the same results without, say, the mandate, they can be allowed to do so. Vermont, for example, has expressed a desire to just go straight to single-payer (in simple terms, everyone is covered, and medical expenses are paid by taxpayers). ( Citation: Page 98, sec. 1332 )
2018
  • All health care plans must now cover preventive care (not just the new ones).
  • A new tax on "Cadillac" health care plans (more expensive plans for rich people who want fancier coverage).
2020
  • The elimination of the "Medicare gap"
.
Aaaaand that's it right there.
The biggest thing opponents of the bill have against it is the mandate. They claim that it forces people to buy insurance, and forcing people to buy something is unconstitutional. Personally, I take the opposite view, as it's not telling people to buy a specific thing, just to have a specific type of thing, just like a part of the money we pay in taxes pays for the police and firemen who protect us, this would have us paying to ensure doctors can treat us for illness and injury.
Plus, as previously mentioned, it's necessary if you're doing away with "pre-existing conditions" because otherwise no one would get insurance until they needed to use it, which defeats the purpose of insurance.
Of course, because so many people are arguing about it, and some of the people arguing about it don't really care whether or not what they're saying is true, there are a lot of things people think the bill does that just aren't true. Here's a few of them:
Obamacare has death panels!: That sounds so cartoonishly evil it must be true, right? Well, no. No part of the bill says anything about appointing people to decide whether or not someone dies. The decision over whether or not your claim is approved is still in the hands of your insurer. However, now there's an appeals process so if your claim gets turned down, you can challenge that. And the government watches that appeals process to make sure it's not being unfair to customers. So if anything the PPACA is trying to stop the death panels. ( Citation: Page 23, sec. 2719 )
What about the Independent Medical Advisory Board? Death Panels!: The Independent Medical Advisory Board is intended to give recommendations on how to save Medicare costs per person, deliver more efficient and effective care, improve access to services, and eliminate waste. However, they have no real power. They put together a recommendation to put before Congress, and Congress votes on it, and the President has power to veto it. What's more, they are specifically told that their recommendation will not ration health care, raise premiums or co-pays, restrict benefits, or restrict eligibility. In other words, they need to find ways to save money without reducing care for patients. So no death panels. In any sense of the (stupid) term. ( Citation: Page 407, sec. 3403 )
Obamacare gives free insurance to illegal immigrants!: Actually, there are multiple parts of the bill that specifically state that the recipient of tax credits and other good stuff must be a legal resident of the United States. And while the bill doesn't specifically forbid illegals from buying insurance or getting treated at hospitals, neither did the laws in the US before the PPACA. So even at worst, illegals still have just as much trouble getting medical care as they used to. ( Citations: Page 122, sec. 1402, Page 123, sec. 1411, Page 125, sec. 1411, Page 132, sec. 1412 )
Obamacare uses taxpayer money for abortions!: One part of the bill says, essentially, that the folks who wrote this bill aren't touching that issue with a ten foot pole. It basically passes the buck on to the states, who can choose to allow insurance plans that cover abortions, or they can choose to not allow them. Obama may be pro-choice, but that is not reflected in the PPACA. ( Citation: Page 64, sec. 1303 )
Obamacare won't let me keep the insurance I have!: The PPACA actually very specifically says you can keep the insurance you have if you want. ( Citation: Page 55, sec. 1251 )
Obamacare will make the government get between me and my doctor!: The PPACA very specifically says that the Secretary of Health and Human Services (who is in charge of much of the bill), is absolutely not to promote any regulation that hinders a patient's ability to get health care, to speak with their doctor, or have access to a full range of treatment options. ( Citation: Page 165, sec. 1554 )
Obamacare has a public option! That makes it bad!: The public option (which would give people the option of getting insurance from a government-run insurer, thus the name), whether you like it or not, was taken out of the bill before it was passed. You can still see where it used to be, though. ( Citation: Page 92, sec. 1323 (the first one))
Obamacare will cost trillions and put us in massive debt!: The PPACA will cost a lot of money... at first. $1.7 Trillion. Yikes, right? But that's just to get the ball rolling. You see, amongst the things built into the bill are new taxes - on insurers, pharmaceutical companies, tanning salons, and a slight increase in taxes on people who make over $200K (an increase of less than 1%). Additionally, the bill cuts some stuff from Medicare that's not really working, and generally tries to make everything work more efficiently. Also, the increased focus on preventative care (making sure people don't get sick in the first place), should help to save money the government already spends on emergency care for these same people. Basically, by catching illnesses early, we're not spending as much on emergency room visits. According to the Congressional Budget Office, who studies these things, the ultimate result is that this bill will reduce the yearly deficit by $210 billion. By the year 2021, the bill will actually have paid itself and started bringing in more money than it cost.
Obamacare is twice as long as War and Peace!: War and Peace is 587,287 words long. The Patient Protection and Affordable Care Act, depending on which version you're referring to, is between 300,000-400,000 words long. Don't get me wrong, it's still very long, but it's not as long as War and Peace. Also, it bears mention that bills are often long. In 2005, Republicans passed the Safe, Accountable, Flexible, Efficient Transportation Equity Act: A Legacy for Users, 2005, which was almost as long as the PPACA, and no one raised a stink about it.
The people who passed Obamacare didn't even read it!: Are you kidding? They had been reading it over and over for a half a year. This thing was being tossed around in debates for ages. And it went through numerous revisions, but every time it was revised, it was just adding, removing, or changing small parts of it, not rewriting the whole thing. And every time it was revised, the new version of the bill was published online for everyone to see. The final time it was edited, there may not have been time to re-read the entire thing before voting on it, but there wasn't a need to, because everyone had already read it all. The only thing people needed to read was the revision, which there was plenty of time to do.
Pelosi said something like, "we'll have to pass the bill before reading it"!: The actual quote is "we have to pass the bill so that you can find out what is in it, away from the fog of controversy", and she's talking about all the lies and false rumors that were spreading about it. Things had gotten so absurd that by this point many had given up on trying to have an honest dialogue about it, since people kept worrying about things that had no basis in reality. Pelosi was simply trying to say that once the bill is finalized and passed, then everyone can look at it and see, without question, what is actually in the thing (as opposed to some new amendment you heard on the radio that they were going to put in).
I think those are some of the bigger ones. I'll try to get to more as I think of them.

Friday, June 22, 2012

College Girl Problems

Right now, life doesn't have too many good times for me. Well I take that back- there are good times, it's just hidden in all of that stress so that I can't see it. Let me explain what I mean.

1- I am not happy with my current job. I'm just not. I don't feel like it's a good fit for me on many different levels so I'm just plain not happy there. People may say "Well you should feel blessed to have a job" and I do! I just feel like everyone should at least be happy on some level with the job that they have. Which I, most certainly am not.

2- I have no money. None. Zip. Zero. Nada. You get the picture. This probably feeds into problem number 1. Now I know every college student has the same problem. Spaghetti-o's and ramen noodles for meals and second hand clothes. I get it. But right now...I have the last two tuition payments to make and no idea how I'll make them. Fantastic. Do you know what it's like to get a knot in your stomach everytime you think of something?? I wish I had a talent that people would pay me for. You know, some people sell things they craft, some people sell things they sew, some people teach lessons, like piano on the side. Me? I got nothing. Unless someone wants to pay me to have surgery. Because that I have down to an art form. Which brings me to number three...

3- I am terrified I'll have another health problem. Like my Cowden's is the little monster hiding around the corner just waiting to spring out and get me. (Is that a sad analogy or what?) I'm seriously waiting to get another infection in my implant, have brain surgery again, or have something wrong with my thyroid. That's crazy thinking I know but it's how I think. I'm almost scared to live my life because I'm too worried about what will happen.

Now granted I am thankful for things too. But I'm not in the mood right now to dwell on THAT (Because that'd be logical). I guess just one day at a time, say my prayers, take my vitamins, blah blah. I always think of Dory in Finding Nemo "Just keep swimming, just keep swimming"

Wednesday, June 13, 2012

Dr. Oransky

Thanks to Sue Friedman's blog for FORCE I became aware of Dr. Oransky's talk on "pre" conditions in which he specifically mentions previvors and FORCE. You can see his talk : here . I encourage you to watch the video and form your own opinion I debated for several days on whether to post a blog or to respond at all.  Then I decided to do both :) You know me, can't keep quiet on something for too long. This is the comment I left on his blog.. we'll see if  I get a reponse




Dr. Oransky-

I watched your video a few days ago and have been composing a response to it ever since then. I suppose from the outside looking in, as someone who has never experienced what PREVIVORS have gone through, the drastic measures that we take do seem a tad silly. If you simply state "I'm cutting off my breasts in order to prevent cancer but I don't have it yet" I suppose it does seem a bit ridiculous.

However, Dr. Oransky I can assure you it's anything but.

You see, I am not a BRCA carrier. I am an "uninformed negative" simply because I was adopted and there wasn't enough family history to successfully test me for the gene. However, I have the pleasure of having another genetic condition- Cowden's Syndrome. Cowden's Syndrome is a tumor suppressor gene mutation. It's very rare. Most of my doctor's have to be told about it and then go research it before they decide how to treat me. I'm seen by a genetic counselor, not on a regular basis now but there's always one in the background if I have questions. Cowden's Syndrome gives you numerous benign tumors. To date, I've had approximately 25 surgeries for various things. (I suppose at this point I should say that I'm 28)

When I had a benign brain tumor (Lhermitte Duclos) the neurosurgeon was astute enough to suggest I get tested for Cowden's. I was 19 at the time. When I tested positive for the mutation I was given information about all of the risks and additional screenings. I was warned about the elevated breast cancer risk and told that I had the option of a preventative mastectomy. I decided to wait and go with increased surveillance instead. I had my first mammogram and the ripe old age of 23. Do you know what it's like to sit in a breast center waiting room with a terrycloth robe on getting pitying looks from the 50 and 60 year olds there for the annual?

Every mammorgram I had, I immediately had an ultrasound. Then a breast MRI. Then an unltrasound guided needle core biopsy. Then an excissional biopsy. This entire process would take months. Do you have any idea how agonizing it is to wait to hear if you have breast cancer before you're 30?? The same doctor had performed all but one of my breast biopsies (I had been having them since I was 13, for fibroadenomas first). We had formed a very good relationship. He begged me to have a mastectomy. As well as 3 other doctors. You see, I'd had purulent (yes I'm in nursing school so I know big medical words :) ) nipple discharge, and several biopsies come back with ADH (atypical ductal hyperplasia). I'm sure you can appreciate that I was on a slippery slope to DCIS or invasive breast cancer. What's funny is that the 4 doctors that begged me to have the mastectomy actually would've profited more from my NOT Having one. Have you checked out the price of the aforementioned tests?? And all of those were done twice a year. I would've ended up racking up medical bills in the millions. And what if I'd actually been diagnosed with breast cancer? Then you add chemotherapy/radiation, lumpectomy, PET scans, etc,etc. So the assertion that you made, of doctor's being able to profit from things like this is simply not true in all cases. It would've made more business sense to keep me having tests.

I finally decided I was DONE. I was done waiting in agony to see if this was the time I didn't dodge the bullet. I was done getting legally tortured by mammograms and breast MRIS and needle biopsies. I was done worrying about whether I was going to die young. So I agreed to have a prophlaytic bilateral mastectomy with reconstruction.

I frantically searched from some type of support group and some type of group that I'd fit into it. I wasn't a survivor, so  I didn't want to label myself as one. Someone turned me on to the FORCE page and the term PREvivor. PERFECtT! I found where I belong! I quickly got the book "Previvors" and read it. Then I gave it to my mother to read, and it helped her understand why I was making such a radical decision.

In April 2011 I marched into the hospital perfectly healthy and had my breasts removed. And..things didn't quite go as planned. I had complications. PLURAL. It was a pain. It was heartbreaking. But it wasn't life threatening. And now, a year later, I'm perfectly fine.

I say all of that to say this. I took major offense to your dismissal of the term previvor. It's something I'm proud to be a part of. FORCE was a lifeline for me in a very hard time in my life. And yes, it was hard. Gut wrenching. But never once did I regret my decision or turn back and FORCE made me realize it was ok to be like that and have moments of complete melt down.

I respect your opinion of the term. I really do. Not everyone agrees with being a previvor. In fact some people with a genetic mutation chose to do nothing at all. But for those of us who stare our inevitable fate in the face and choose NOT to be a victim- please have a little more respect for us and what we've been through. Each person comes to FORCE for a different reason, but everyone has a reason to be there. People with genetic mutations are not the same as someone simply paranoid about getting cancer.


Dr. Oransky, thank you for allowing people to post comments. I know my little story won't change your mind completely, but you do need to realize what a previvor REALLY is.

Michelle

My PREvivor blog: www.tatatothegirls.blogspot.com