Thanksgiving

Thanksgiving weekend is officially over.  And it was wonderful!  We got to spend time with family in a delightfully laid back environment and eat lots of yummy food.  The turkey was tender and moist.  The mashed potatoes with gravy were so creamy and delicious.  The green bean casserole had just the right amount of crunch.  The yams/sweet potatoes, which are my favorite, were just the right amount of lumpy and not too sweet.  The homemade cranberries were very well balanced between sweet and tart.  Stuffing is never my favorite, but it was well done.   Lastly, my uncle makes the best homemade rolls with their soft butteriness. It was all so yummy when warm and fresh on Thursday. And then was just as delicious as sandwiches on Friday.  Some turkey, stuffing, mashed potatoes and cranberries placed on a nice buttery roll.  Decadent!  As you can tell, I thoroughly enjoyed eating our wonderful thanksgiving dinner.  

To top it off, the kids had a blast playing with cousins they don’t see often while I was able to relax a bit and chat with some amazing family.  My husband enjoyed himself while actually tiring out our little dog on a 15 mile bike ride. I didn’t think I’d ever see the day when he was actually exhausted.  He was so tired on the following day he just laid around on the driveway and in the gutter out front while we put our Christmas lights up the entire day. Normally he would be pestering us to play fetch with him the entire time.  So it was a nice little break from the constant interruptions and annoyance from him. And we actually got all of our lights up in 2 days!  We have a tendency to go all out while putting Christmas lights up and it usually takes us at least 5 days. And this year we were able to accomplish it in 2.  The kiddos helped us a bit and were able to play and entertain themselves quite a bit.  Can’t believe Christmas is only 29 days away!!  Eek!  Before you know it, Matt and I will be in Bethesda for round 2 of my EGD with gastric mapping.

I hope you all had a marvelous Thanksgiving weekend!

Next stop on the food tour a little place called Hanny’s downtown Phoenix.  

SURGERY DATE

Okay, it’s basically been 2 months since my last post.  Life has been pretty awesome these last 2 months. First off, the weather has just been amazing as of recent here in Phoenix, AZ.  We’ve been soaking it all in by trying to spend as much time as possible outside.  And we’ve had so much rain which is just amazing for us.

On the CDH1 and total gastrectomy front, I had a ‘ah-ha’ moment a couple of weeks ago.  I’ve been thinking I want to have the big surgery in March 2019 for several different reasons.  But this timing has just seemed right from the get go and will work well all around.   Well, a couple of weeks ago my husband was asking if I was nervous to wait until March.  It makes him a bit nervous so he was wondering if I felt the same. And my answer was ‘yes, it absolutely does!’  This has been my dilemma from the very beginning.  I mean, it seems like it would be reasonable to wait until March but at the same time we keep reading ‘horror’ stories of people finding later stage cancers just months after their EGD that was normal.  So, as our conversation unfolded I realized that I would probably be able to go back to the NIH for another EGD with biopsies and gastric mapping before the big surgery in March.  So I emailed the surgeon, Dr Davis, and his response was exactly what I was hoping to hear.  He completely understands and finds it reasonable to do another EGD in January to ease our nerves a bit.  Okay, so we’ll be making another trip to Bethesda, MA early January. It’ll be a much shorter trip so we won’t have as much time to sight see and eat good food, but we’ll still get to experience the weather and hopefully enjoy a couple good meals. 

And, the more emotion provoking news is I have an official surgery date of March 21, 2019.  It’s feeling quite a bit more real now that I have it on the calendar. I had a little moment of anxiety and tears this morning as I was typing it into my Google Calendar.  Of course I know this is for the best and I need to keep believing everything is going to be fine. It’s all about perspective, right?  So the countdown begins and so does my food tour. First stop...the pizza festival here in Phoenix. 

While speaking with the NIH dietician, Rachael, she recommended ‘practicing’ chewing my food a lot as this is something I’m going to have to do post-op to help my intestines grow accustomed to processing food in a new way. Since I won’t have a stomach to do the mechanical breaking down of food, I will need to chew my food extra. Unfortunately, we (my family and I) have a tendency to inhale our food especially when we are so busy and don’t have a ton of time to sit and eat.  So she suggested getting started on practicing just so I kind of have a feel for what to expect. I told her I’m going to have the rest of my life to eat slowly while chewing a ton so I’m going to enjoy being able to inhale my food for the time being. Haha. But then I told her I will try it out here or there with different types of food as she suggested. Especially since foods might not taste the same when chewed to a purée.  

Rachael was very reassuring that my habits at home with small kids will serve me well post-op.  I am already used to always having snacks on hand. This made me laugh but it is so true.  Other people who don’t have small children might not already be in that same habit. So my learning curve as far as that is concerned shouldn’t be too life altering. We also discussed going back to work after the surgery. She seemed a bit surprised when I told her my plan was to go back to my regular duties at 8 weeks. I do work part time (30 hours a week) as a nurse in a pediatric recovery room.  And let me tell you, I have the best job on this planet.  I never thought I would enjoy going to work everyday as much as I do.  And to top it off I have the most supportive and understanding coworkers, supervisors, and management.  I am a bit concerned about my energy level at the 8 weeks mark as it is going to be difficult and hard work to take in sufficient calories, but for now my plan remains the same.  We just won’t know how I’m going to do until that time comes.  

There are so many unknowns at this point.  No matter how many people I talk to who are in similar situations, I don’t feel I’m going to ever be as prepared as I would like to be. I’m going to go into it just like I do every other huge life change I’ve experienced...hoping for the best but preparing for the worst.  So far in my 34 years, this mentality has not let me down.