Tuesday, August 12, 2008

Soapbox, again. Cue the eyeroll.

Another lovely day at the lake. I am being completely spoiled up here. We spent a leisurely afternoon floating on the boat. It was just what the doctor ordered. And for tonight we are even having chocolate fondue for dinner! No not for dessert, for dinner. A girl could get use to this! Who are these people who are calling themselves my parents? And where were they when I was a kid?!

I am going to attempt* to answer Aunt Jay's question: "Is there a way to tell if he (Andy) has the gene but that it is dormant in him? In other words, could he pass it along to children without actually having the disease himself?" The good news is Andy cannot have FAP. FAP is characterized by having hundreds of polyps in the colon by the mid twenties. Unfortunately there are other variations of FAP. One being Attenuated FAP (AFAP) The average number of polyps in AFAP is much less (I have read around 30) and the onset is much later (growths start after twenty and turn cancerous around the fifties). Where classic FAP the polyps start growing around puberty and turn cancerous around the thirties. So, if Andy's lonely little polyp does come back at precancerous then he will have to undergo genetic testing to make sure he doesn't have AFAP. As for passing it on, I believe the chance is much less for his future offspring. Instead of the 50% chance with classic FAP it is 5% (or is it 0.5%?? goes ask genetics genius Andy or google it if you need specifics) with AFAP. If Andy's polyp comes back as benign then we know for sure that I am a lonely mutant (yeah aren't mutants suppose to get super powers? Where are mine? Maybe I just haven't discovered them yet. Oh the possibilities!)


There are also other variations of FAP, like Gardner's and Turcot's syndrome. When I go in for my genetics counseling (as soon as I am healed more) I hope to find out if I have one of these known variations. Each variation carry different risks, for example people with Turcot's have a higher risk of brain tumors and Gardner's has a higher risk of thyroid cancer. The good news is if you know you have one of these, then you can undergo screenings so it can all be caught very early.


This is part of the reason I get so pissy when someone says something like "well, now that your colon is out you are cured." No, sorry, wrong answer. I can never be CURED! I will have to live with and carry this disease with me the rest of my life. At the very least I will have to undergo yearly (that is after I graduate from the every 3 months to the every 6 months to the yearly) screenings of both ends of my GI tract. Remember that little (actually not so little at over an inch) time bomb in my duodenum, we still have to keep our eye on that bugger till it comes time for him to be removed.


Ok, climbing off my soap box now.

*I am not a medical professional and I could very well not have a clue what I am talking about. So please ask your doctor or a medical professional or at least google before acting on anything I may say in my blog.

11 comments:

Carly said...

I'm glad you are relaxing and having a nice time..I want to be on a boat :(

heather said...

just wanted to say that you are being amazing strong and brave. I love reading your updates and knowing that you are healing slowly but nicely. Enjoy the chocolate for dinner. Also enjoyed the shower post b/c that would so be me if I was ever in that situation. Please take it easy. nestie friend sweety21

Keri said...

Chocolate fondue for dinner? Nice! What's next, cupcakes for breakfast?

You deserve it, girl!

Anonymous said...

Steph- it was so heart warming to see you enjoying yourself on the lake...that picture made my day!
Can I assume your anti nausea meds are allowing you to get some reading time in?
My nephew Jason is doing his post graduate work in the field of genetic research; I'm going to run Aunt Jay's question by him...I'll let you know what he has to say.
Love you
Aunt Donna

Mom-To-Be said...

No super power? I beg to differ. I believe you have super strength! You've shown so much more power in the last few weeks then I could muster in a lifetime! Plus you have the power to get chocolate for dinner! If that's not a super power then I don't know what is!

I'm glad to hear you're enjoying yourself.

Ed said...

We don't know each other, as I surfed to your blog from someone else's, but I managed to lose (and regain!) 25 lbs or so during colon cancer treatment... and I swear I ate like 2 lbs of M&M's every day. It was my version of heaven.

You are so strong and so good with words. Thanks for sharing your journey in blog-land.

Paula said...

Hey Steph - You look beautiful! Looks like mom and dad are doing a great job spoiling you. I wish I was having chocolate fondue - that sounds delicious. Sounds like your appetite is returning. Keep up the good work Dee and Jim.
Love, Aunt Paula

Aunt Deb and Family said...

Hi Stephanie, So glad you put a picture of you on your blog. You look like you're feeling pretty good in your picture. Floating around on the lake seems like the best medicine to me. Sounds like it was a smart choice going to the lake for a week of pampering and relaxation. I was glad to hear the good news on Andrews scope. Keep up the good work Steph. Love to you all, Aunt Deb

Mandy said...

Steph! You look great!!! Okay, so now I'm going to have to go to the store to get the stuff for chocolate fondue, thank you VERY much! Hope it was yummy and made you gain 5 lbs!

Mandy Beach

Amanda said...

Hey Steph! I was so glad to finally see a post-op picture of you...you look great and very relaxed (all things considering!)

I know you've been up at the lake, but if you still want my 'Friends' DVD's, just give me a holler. I have them in a box but haven't made it to the PO yet...just say the word and I'll send em your way!

Jeff said...

Dear Mutant Steph,

I've noticed the super powers. In due time you will too. Say hey to the old man and Diana.

Uncle jeff