Family Vacation

It’s been a while since my last post. I’ve been struggling with what to talk about since receiving my pathology results because there’s nothing new on the CDH1 front.  So I’m just going to blog about life. Haha

My family and I are on vacation at the moment in Portland, Oregon. I have some family here (totally unrelated to the CDH1 side) and we decided it was time to bring the kiddos to meet  those they had yet to meet. Today is our first full day in beautiful Portland and we are enjoying it to the fullest. The kiddos have a goal of spending time at a park every single day. We are sitting at our second park for today so they are well on their way to accomplishing said goal.  

My goal for the trip is to enjoy lots of good food and desserts, as usual, right?!  Haha. Last night we were treated to a home cooked lasagna dinner with a yummy fresh salad and wonderful company at my Aunt Barb’s and Uncle Bob’s house. I myself have only been here once as a kid and their house is so much like I remember. A huge garden, beautiful pond, and pasture for the kids to explore. They’ve added their bee hives since I’ve been here last (when I was 10 years old).  And this morning we went to a small restaurant called Waffle Window which has gourmet type waffles. I ordered a ham and cheese wad free which was amazing. My family didn’t like it so much but I would definitely go back. 

My husband’s goal is simple...To eat good ice cream. Haha.  Which sounds like that is going to be super easy at a place nearby called Salt & Straw. Apparently has normal and gourmet type flavors which is totally up my alley. Haha. My husband will probably go for the more  moral flavors but sounds pretty yummy. I’ll let you know how it is. 

Goodnight. 

Pathology Results

I received a call this morning from the NP at NIH.  I thought she was calling regarding my return to work FMLA paperwork.  To my surprise, she also wanted to talk about my pathology results. It was supposed to take 2 weeks, so this was a pleasant surprise.  She said there were no signet cells found in the biopsies from my EGD.  And anybody who doesn’t know very much about CDH1 would be excited about that.  Let’s just say it is what it is. At least they didn’t find end stage cancer, right?  But this does not reassure me that I can put off a prophylactic total gastrectomy.  The NP mentioned it would be totally okay if I decided to have yearly surveillance and wait a few years to have the surgery.  I just can’t imagine having just a yearly surveillance that is not even reliable at this point in time.  I’m already a bit anxious about waiting 8-9 months from know. Which is kind of the timeline I’m thinking here. That will allow me another Thanksgiving, Christmas, and New Year to eat as I’m used to before taking the plunge.  I would totally do it like January of 2019, but since I’ve decided to do it at NIH it will be a bit freezy there in January. So I’m going to opt for March or April of 2019 when myself and Matt can enjoy cherry blossom season for at least part of a day before spending several days in the hospital.

In the meantime I’m going to be training for a half marathon, which is in January, and getting my butt into awesome shape so I can go into surgery strong and ready for a long recovery.  My plan is to do lots of weight training too.  And indulging a bit on desserts and other foods I normally feel guilty for eating to much of.  There’s going to be a balance I need to find so I don’t overindulge and gain 60 lbs before surgery.  Eeek!  My goal is to neither gain or lose weight before surgery.  I think going in just the weight I am but in better shape will work out best. 

So, for now I get on with my life per usual and carpe diem (English translation: seize the day, put little trust in tomorrow)