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 ;)
Based on genetic risks, I decided to have a prophylactic bilateral mastectomy to manage my breast cancer risk. Enjoy reading all of the ups and downs (with a little bit of humor along the way) as I make the biggest decision of my life, which officially earns me the title of PREVIVOR
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.
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