Tuesday, May 29, 2018

NIH appointments officially booked

I have my appt with the NIH June 19-23.  Matt and I will be making a trip out to Maryland to have my consults and we are going to make a vacation out of it. Neither of us have been to Maryland/dc before so we might as well make the most of it.  So we fly in on a Tuesday afternoon, will go get admitted to NIH and then our first appointment will be Wednesday morning with the gastroenterologist, Dr Curtin, and have my pre-anesthesia labs, testing, and such.  Then we will have the rest of the day to explore the D.C. area.  Thursday morning I will have an EGD performed by Dr Curtin where I've been told he will take 80+ biopsies from my stomach, which is significantly more than my GI specialist did here in Phoenix.  Then on Friday we will meet with Dr Davis, the surgeon, and the genetic counselor.  I'm excited to meet with this entire team to get educated on what they know and get more of a glimpse into this study.  It sounds very cutting edge and best case scenario for me and my family.  I'm trying not to get my hopes up as it almost sounds too good to be true.  Only time will tell at this point.

The last couple of months my relationship with food has really changed and it’s kind of a roller coaster ride. Some days I feel I want to be as healthy as possible going into surgery so I should eat well and keep exercising.  Other days I just want to enjoy food while I still can. Who knows what my new body with tolerate post PTG. I am still exercising and feel very confident that I at least want my body to be strong going into it.  I definitely don’t want to lose any weight going in but I also don’t want to gain any either.  Talk about a conundrum.  Which leads me to wanting to have the PTG sooner than later so I can be done with it and move on.  Can I stop making these decisions now...stop adulting for now...and just enjoy life with my amazing husband and wonderful children?

This too shall pass...

Sunday, May 13, 2018

Mother's Day

I am so blessed to have such a wonderful family.  I did exactly what I always want to do on Mother's Day....absolutely nothing, nothing except spend time with loved ones.  No cooking, no cleaning, no disciplining, no working.  My awesome husband always does a great job of making that happen.  I can just love on the kiddos when they want it and enjoy our time together.  

We went to my mother-in-laws house for the kiddos to swim and had pizza for dinner.  Which was absolutely perfect.  My sister in law gave me a necklace (I was definitely not expecting a gift from her).  It is Morse code for fuck cancer and I love it!!  I would love to start making them.  I could do necklaces and bracelets.  First, I'de like to make them for all of those who have entered my life, touched me in some way, or inspired me on this journey.  Then maybe I can make them for raising funds for HDGC and CDH1.    

A Day in the Life - seahorse edition

I’ve gotten my eating and drinking routine down pretty good now. I have a really good grip on what helps me feel my best and what doesn’t. T...