Friday, July 18, 2008

Positives and negatives

I don't know if I have really gone into detail explaining my upcoming surgery.  HERE is a good site  to learn more on it.  It does a better job then I could explaining it all.  My only problem with it is the last sentence; "Patient satisfaction with this surgery is high and with both ulcerative colitis and familial polyposis patients, their disease is cured!"  Unfortunately for FAP patients our disease is never "cured".  I will always have to under go monitoring by scopes multiple times a year.  Polyps can grow in my pouch and duodenum (which we all know I already have).  FAP patients also have a 80% chance that polyps will grow in their stomach.  Other areas that can grow tumors are skin, bones, thyroid and abdomen.  The abdomen tumors are called desmoid tumors.  20% of patients will develop desmoid tumors after a colectomy.   So basically what this tangent was all about is, I will never be cured.  

Sorry to be so doom and gloom.  But that is the truth of FAP.  After I recover some from this first surgery, I will meet with a genetics counselor.  Then we will begin to have a better understanding of the rest of my "risks".   

In other news, yesterday I made the appointment with the ET (enterostomal therapy) nurse.  I will meet with her early monday and she will mark me with sharpie where ostomy site should be.  Everyday it becomes a little more real.  

Have I shown you guys where I'll be recovering yet? Check this place out!  It seems more like a resort than a hospital!  Scott can't get over how excited I am about this.  But hey when you're in my shoes you have to relish in all the positives you can.   All I have to say is they have a meditation labyrinth, outdoor healing garden, complementary holistic therapies (ie.  acupuncture) wifi, plasma tvs, and it is LEED-certified (basically means that it is a 'green' building).  Silly the things I get excited about, huh?  

*Yeah I know the chance that I'll get to experience these things while I'm there is slim to none, but it doesn't mean it isn't cool.  

**Did you like how this post went from all doom and gloom to positive?  Yeah I'm good at that.  

4 comments:

Aunt Deb and Family said...

Stephanie, What an amazing hospital! I too would be excited about a hospital that looks like that. Your right,look at all the positives you can.
I looked at the site about your surgery too and that was really interesting. I basically knew what was going to happen but not in such detail. KEEP YOUR CHIN UP GIRLIE! This is kind of corny I know but I read your blog everyday and I feel like I am right there with you minus the hugs I would be giving you. Thanks for blogging. I love you.
See ya tomorrow, same time same place.

Keri said...

Stop apologizing so much in your blog! You have nothing to be apologizing about.

Lacks really does look awesome, by the way.

Carly said...

Steph,
That place does look nice! If only you could view it as a mini vacation. Thanks for the blog and sharing. You're in our thoughts.

~Carly and Bradick

Janine said...

I LOVE YOU STEPH!!!Sorry it's been so long since Ive gotten in touch with you, been away with the fam, but know that you are in my in my prayers ALWAYS. You are such a strong, amazing person, and although I'm physically far away from you right now, know that I am with you in thoughts and prayers and I'm only a phone call away. MISS YOU HON!