Be Kind To Yourself

My last EGD/gastric mapping was over 6 months ago.  And it’s not typical they do another one so soon for CDH1. There are usually 2 scenarios.  First, you get your EGD and decide to have surgery not long after (like a couple months later).  This scenario is the one I’m finding most common from the people I’ve talked to online.  Second, you get your EGD and decide you’re not ready for a total gastrectomy.  Some people wait years to take the plunge.  In that case, they get annual EGD’s as a screening (even though this screening method has not proven to be effective in finding early stages HDGC).  And then there’s me who decided I definitely wanted the surgery soon, like within a year, but not quite a couple months later.  When I made this decision I was 100% okay with it. But as the months have gone on I keep reading stories of people finding the cancer in late stages even months after an EGD. That’s the tricky thing with this gene. They (meaning medical professionals) don’t fully understand the gene and the timeline with certain (signet) cells ‘being turned on’ vs staying dormant for lack of a better term.  So I emailed my surgeon asking what he thought about getting another EGD/mapping a few months before surgery.  He quickly replied that he thought that was totally reasonable.

So here we are today, Jan 10, 2019 and I am getting a second EGD tomorrow at the NIH.  Matt and I were on the red eye to D.C. last night.  Slept as good as we probably could have on the plane and then was able to catch a nap after checking in early at our hotel.  Then several hours spent at the hospital getting pre-anesthesia testing done has left us pretty exhausted.  We did muster up the energy to go to the hotel gym and do some good cardio for about 30 mins which really helped!  It’s so easy to get into a slump of low energy and not want to do anything. But it’s amazing what exercise can do for your body (and your mind for that matter).  But I digress.  We are so lucky to have healthy, active bodies that allow us to enjoy many aspects of life.  Including a nice cocktail and amazing food. Haha. You know how much I love food.  We tried a new restaurant (new to us anyway) in Bethesda.  Uncle Julio.  We enjoyed the table-side guacamole preparation with a yummy smoky salsa. We decided to get the single fajita to split and it was the perfect portion for us so we could still enjoy some dessert.  But the chicken and steak for the fajitas was so tender and juicy. Makes my mouth water just thinking about it.  Not to mention the cocktail that was recommended to me while waiting in line to be seated by the women in front of us. It’s called The Swirl and it’s handmade Sangria swirled with frozen margarita.  We might have to try to make this at home.  

Oh and being from Phoenix, AZ it is freezing here!!  High’s in the 30’s is not how we like to roll.  The short walls back to the hotel this evening was a bit frigid.  But we made it. 

One more thing.  The last couple of weeks I’ve been pretty down about my physical appearance. I’ve gained a bit of weight and my entire life it’s never been a good thing to pack on the pounds. I’m not at my heaviest weight ever but I was so stable and finally learning to be happy with my body when I learned of this CDH1 mutation.  On the surface I am happy with my body. Like I said before I am so fortunate to have such an amazing body that has done so many wonderful things for me and will hopefully continue to for a very long time.  But deep down it can be difficult to love this amazing body when most of my clothes don’t fit anymore.  Haha. My hubby and I joke that he’s put on some sympathy weight. I mean he has but I’m so glad we are able to laugh about it and make light of the entire situation. So since being here in Bethesda and with our appts at NIH today a couple members of the medical team have made me feel so good about enjoying food these last several months.  “The weight is going to come off...don’t you even worry about that” and “you should enjoy all of your favorite foods right now”.  And I know they are absolutely correct. Who knows what foods I’m going to tolerate after this crazy surgery.   Also, I have still been training for this half marathon which has had its speed bumps for sure.  The most recent being I sprained a ligament in my knee so that put me out for a week so lost a little progress there.  But s soon as I consulted with an ortho PA I felt confident I could run on it without injuring it further.  Race day is in about 10 days and the max I have run is 9.3 miles. But I’m feeling good about my knee and that my body can do it as long as I pace myself and take it slow.  It’ll be fun running with gals from work and accomplishing this goal.

Okay, now that I’ve rabbled a bit more than I anticipated I leave you here with a saying very popular at my daughter school 

“Be kind to yourself, others, and all things around you” (I’m choosing to focus on the yourself part at least a little each day)