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.

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.


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"


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'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?


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 
• 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)
Age of Initiation
Breast (25-50%)
Annual mammogram and breast MRI
Clinical Breast exam every 6 months
Discussion of prophylactic mastectomy
Uterus (10%)
Annual pelvic exam and Pap
Review signs and symptoms of cancer
Discussion of prophylactic hysterectomy
Thyroid (10%)
Baseline thyroid ultrasound
Consider annual thyroid ultrasound vs physical exam
Mucocutaneous –benign (99%)
Annual dermatologic exam
Colon (9%)
Consider colonoscopy every 5-10 years

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 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"