Tuesday, August 23, 2016

It's all good

It is ALL GOOD NEWS.  At this point in my progression of the disease I do not need a chemopreventative. Everything can be managed by yearly scoping.

Everything went great at MD Anderson.  I LOVED (like really loved) the doctor.  It was so nice to be seen by someone who not only knows his shit but also talks to you like an educated person.  It was fun nerding out and discussing research and clinical trials.  (I was, however, unimpressed by the hospital itself.)

Between the cold forceps and argon plasma coagulator, most (all?) of my polyps were removed.  We are awaiting biopsy results of some, but there is no reason to think the worse.  As for the j-pouch, there were a lot of polyps BUT he doesn't think they are all adenomas (the pre-maliganat bad guys). He wasn't sure what they were so we are awaiting those biopsies also.

Oh yeah, on the last post I did bad math.  It's been 8 years not 9! Glad to know I can count.

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.)