Tuesday, February 1, 2011

Update #2,467 (or so it seems)

Okay, since our last post, I've managed to survive a series of tests, pokes, prods, x-rays, psych exam, jaw exercises (shut it), consults, and bad hospital 'cafe' food. The bad news: It was exhausting and time consuming. The good news: I'm not psychotic (I'm actually just assuming so, as we haven't heard back on the psych exam yet so I'm deciding that no news is good news), my jaw won't be stuck this way forever (if I am diligent about using the contraption they gave me to use on a daily basis, which looks strikingly similar to that gadget the gyno uses to perform your PAP), the lesions that appeared in my lungs (on the last CT scan) are nothing to be concerned about, and the MRI of my spine showed no cancer or tumors. Holla!

So, we are finally at the point in this journey where we can raise our glass and celebrate the fact that for a while, I'm free. Free from the white sterile walls of the hospitals, the constant "beep, beep, beep" you hear in the hallways, that smell that never goes away and seems to stick to your clothes even after you've left the hospital (seriously, what is that? bad breath?), and the overall sadness and worry that lingers in the air in the waiting rooms.

From here, we have one job to do: Decide whether or not to do radiation. Yes, WE have that job. Not our doctors. After receiving our fourth opinion, we were told that although radiation treatment might prolong the time that it takes for my tumor to recur, it might not. There isn't enough evidence to show whether those who've had a hemangiopericytoma (going forward I'll refer to it as an HCT cuz I'm getting carpel tunnel from typing the whole damn word already) treated by radiation went for 5, 10, etc., years before the tumor recurred because of the radiation or not. Let me clarify-there's a 25% chance that my tumor (I'll call her bitch for now, as I haven't decided on her name) will come back in 5 years. A 65% chance it will come back in 10 and 75-80% chance it'll come back in 15 years. Some who have been treated with radiation for their HCTs had their tumor return after 10 years, but there isn't any evidence / research to support the fact that the tumor wouldn't have returned after 10 years w/out radiation. Does that make sense?

Jake and I have yet to really get down to the nitty gritty to chart out the pros and cons of radiation. I have my gut feeling (as of yesterday, four days after our last neuro consult) and I believe Jake does to. Guess what... our gut feelings are opposite. So, we have some discussing to do. I'll be on my way to the booze store just after finishing this post, needless to say. ;) Whether we do radiation or not, I'll undergo "observation" forever (MRIs and CTs on a regular basis). So, if something recurs, we will be able to treat and / or remove the tiny little bitch before she tries taking me down like she did in October.

Dear Ilithyia (hellz yeah I just decided what I'll be naming my tumor... Sparticus fans, you'll understand the name choice. Those of you who don't watch Sparticus, here is her bio - http://www.imdb.com/character/ch0153972/bio. She's one nasty bitch):
You invaded the wrong brain. Your arrogance has led you down the wrong path. You think you are a "rare" flower, that's untouchable by modern medicine, strength, good nature and faith. You believe you have the power to defeat anyone you invade. You are mistaken. What you should be aware of is that since you've decided to invade my body, you have now taken on a lifetime of beatings, abuse, and defeat. I have never been defeated - not by deployment, not by job loss, not by financial woes, and certainly will not be defeated by you. Prepare yourself - you have a long road ahead of you. Find your place in purgatory, because you will not make your home in my brain or body EVER, EVER, again and I will spend the rest of my life laughing at the embarrassing effort you made at taking me down. Regardless of the decision we make on how to defend ourselves to you, we will win. And you will perish.

5 comments:

Nan said...

you rock! you crack me up so much girl! you never cease to amaze me with your strength and perseverance. hugs!!

Kelly said...

So glad everything went well today! We'll have to set up a night to celebrate soon...oooh how bout SUNDARA!!

Deanna said...

You are so incredibly awesome...I can't even describe it.

P.S. A friend just intro'd me to Spartacus and I'm already hooked.

Kamie Gritt said...

Love, love LOVE your positive outlook!!!!!

Anonymous said...

Can I just say you are frick'n AWESOME!!!!! Thank you for sharing and your positive attitude you are such an inspiration and strong women!!! Thinking about you.

Angela Franchino