Saturday, August 13, 2016

Nine years later

We now live in Texas and have two amazing and wild-as-all-hell little boys*. Gracie is still with us and going strong at almost 9 years old.  I have fallen in love with powerlifting** and I am working on starting my own nutritional consulting business.  9 years ago, I was worried about how this diagnosis and the following surgeries would affect my life.  I have to say, they are not holding me back at all. 

In 3 days, Scott and I will be waking up at 3 am and taking our 1st ever vacation alone together traveling to Houston to go to MD Anderson for The Yearly Checkup.  Last year, I saw a doctor locally.  He found “hundreds of polyps in the J-pouch and duodenum” (and was unable to remove most of them due to the amount).  I asked him what this meant for the future.  Would I one day be facing a pancreatoduodectomy or a return to the illeostomy?  He responded with “I don’t know”.  Now, in his defense he as only seen one other FAP patient in his medical career.  With that, I decided I needed to be seen by someone. . . oh just a little more specialized.  

Which brings us to MD Anderson.  While at MD Anderson not only will I be getting upper and lower scope, but I will also be getting my thyroid screened and checked for desmoid tumors (especially important since I have had 2 c-sections in 3 years). Talk about 3 birds with one stone!  I am also hoping to find out if a chemopreventative might be something that could help slow down the growths.  

This trip will be the longest that I have ever been away from my boys. I am trying to think of it as a mini vacation.  A vacation that will include some fasting, some uncomfortable procedures, some dr visits, lots of waiting rooms and some poking and prodding.  But there will be a hotel! And it will be just Scott and I!  And restaurants! Restaurants without little ones in tow! (Well, when I’m not undergoing The Prep.)  Truth of it is, I am more nervous about leaving the boys then I am about the procedures.  We are planning to be there for 3-7 days.  So far I have only been away from them for one night. Thankfully I have a wonderful mother-in-law who is flying down to watch the boys for us.  

I will update here when we get the results.  I also might (just might) do some live updates to snapchat.  (For the record I have no idea what I am doing with snapchat.  But, I am under the impression that no one knows what they are doing with snapchat, so it's all good)

*(Yes, FAP is an inherited autosomal dominant gene. Yes, they both have 50/50 odds of having the gene. No, I won’t discuss their DNA here.  That is their story to tell if/when they want to tell it.) 
** (I’m not very good at the powerlifting thing yet, but I am working on it! Recently hit a 1x bodyweight bench, 1.5x bodyweight squat and I working on a 2x bodyweight dead lift.)  


craig said...

Wow what an update. I always knew you were mentally strong now I see you are a powerlifter! keep at it and good luck with the poking and prodding.

Aunt Deb and Family said...

Spent the day thinking of you.

LaVerne said...

Thanks so much for the update. I read your blog a few years ago when I received a J-pouch after receiving a diagnosis of FAP. I went through some of the same experiences you did (although I am nearly 30 years older than you!) and laughed and cried as I read your blog. So glad to hear you have children. I hope your exams go well and that you can carry on your life with many more happy events. I've had adenomatous polyps in my stomach and one in my duodenum. I recently swallowed a camera and am curious to see what it discloses. Best of luck to you!

dojuma said...

Very nice update