Sunday, December 9, 2018

Cookie day!

I haven’t made it to Hanny’s yet.  I was supposed to go see Justin Timberlake on November 29 with my sister in law and a friend.  We were going to eat at Hanny’s for dinner prior to the concert. Unfortunately the show got postponed because of Justin’s bruised vocal cords.  We were so bummed!  We’d been looking forward to this night out for months.  I mean I feel bad for him.  His voice is a pretty important part of his life. So he’s gotta do what he’s gotta do to take care of himself. And we are lucky he didn’t just cancel it.  Since the show was postponed we postponed Hanny’s. 

Since then we’ve found out Justin rescheduled his Phoenix tour date to March 5, 2019. So glad he picked a date before my surgery day!  Super stoked about it actually. 

While I wait, my hubby and I decided to try a new restaurant the other night.  We ate at Camp Social, local restaurant in Phoenix.  And it was actually our first time there.  The atmosphere is super cute with campers spread throughout. First one is at the hostess station right as you walk through the front doors.  There’s another one next to the bar with a table in it for dining.  The servers wear shirts that say camp counselor on them.  Anyway, we had a date night planned to attend our annual comedy show to wrap up the year.  There were three comedians for the night and all of them seemed to share a common theme.  Kindness.  Which is interesting for a comedy show as comedians tend to make fun of peoples...a lot.  But hey did an amazing job of incorporating kindness into their jokes.  Which I loved. They were all quite funny. We love going to this show every year to laugh and reflect on the year which is coming to an end. As much as this year has been emotionally and mentally challenging, we are so lucky.  We are so lucky to have 2 wonderful, healthy children.  To have each other.  To have a beautiful home.  To have such an amazing family and support system.  To be healthy ourselves. And to just be alive.  And to be able to go laugh for a couple of hours while enjoying each other’s company is very therapeutic.

After a very late night of comedy, we were pretty lazy and non-productive yesterday. I love having those occasional days though.  I used it to rest up for our annual cookie day to come today.


A few of use gather every year to make Christmas cookies.  We make big messes, yell at the kids to stop eating cookie dough and chocolate, and get to enjoy great company while making delicious cookies.  Needless to say I’m pretty exhausted, especially since I processed to make dinner and salads for the week. Haha. So, I’m going to cut my recap of our day short here and wish you a wonderful night.  If I don’t post again before Christmas, have a very Merry Christmas. 

Monday, November 26, 2018

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.  

Monday, November 5, 2018

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.

Monday, September 24, 2018

SUGAR!

Well, I have been addicted to sugar as long as I can remember. It is truly scary how addictive it is and how it is in everything.  From the full blown candy bar and ice cream to ketchup, meats, and  milk.  Several months ago, before I learned of CDH1I embarked on my first Whole 30.  If you’re unfamiliar, Whole 30 is basically a reset to help you determine what foods you do and don’t do well with.  For 30 days you eliminate all added sugars, dairy, alcohol, grains/gluten, and legumes to reset your body and bowels. Then after the 30 days you can slowly reintroduce these things back into your diet to help you determine if any of those food groups are causing you problems (i.e. bloating, gas, etc). Okay, So I started this January 1st of this year with a group of friends at work.  So I really learned how to read labels and if he different sources of sugar.  Well,  I was loving it and going strong. I Felt so good about it and was totally planning on doing the legit reintroduction after the 30 days were over.

Well, January 8th, I learned I had his genetic mutation of my CDH1 gene.  If you’ve read my earlier blogs you’d know my gynecologist nor myself had any idea what this meant.  Even after googling for a couple of hours at work the next day I decided not to let this affect my Whole 30 journey. I was going to wait until I saw the genetic counselor to really figure out what this meant. That was the longest 2 weeks of my life thus far.  After the genetic counseling appointment, which was January 23rd, it took me a few days to realize I wanted to eat whatever the hell I wanted to eat and didn’t care about this Whole 30 bullshit. I mean, who knows if I’ll ever be able to tolerate added sugar again (which is my pitfall and I’m totally addicted). So I had a cookie a couple of days before Whole 30 was over. And instantly regretted it.  I was doing Whole 30 for a reason and still wasn’t sure where this CDH1 journey was going to take me.  So I finished Whole 30 at that point but then did not do a proper reintroduction. Which I’m totally fine with.  So, as you’ve learned I’ve been over indulging a bit and not having much will power when it comes to sweets.  Which I was totally fine with. Other than the fact that it’s very emotional difficult for me to gain weight. I’ve been up and down with my weight my entire adult life and was finally getting into a good groove and balance of eating healthy and staying active and feeling good about myself...and now I’m just going to gain a bunch of weight?  So I’ve waffled back and forth with mixed feeling of ‘I’m going to enjoy eating’ and ‘there’s no reason to overindulge’. Until recently (about a week ago actually), I had yet another epiphany.

Let me back track a bit.  So I had my upper GI with biopsies at the NIH in June.  I’m thinking my TG will be in March. That’s 9 months.  I’ve learned that 9 months in the CDH1 world can be absolutely devastating.  I’ve read and heard countless stories of people having negative biopsies on EGD and then several months later finding late stage HDGC.  In my personal family the only person we know of that had HDGC is my dad. And he was 46 years old.  I’m 34 years old.  So logically it makes sense that I should be able to wait a measly 9 months and be fine. But I’ve also learned that this CDH1 mutation is not logical. There is so much they still don’t understand and I would hate to regret waiting 9 months. However, I’m not ready. There are still things I’d like to do before surgery and am trying to make peace with that decision.

Okay, now to back to the sugar epiphany.  If I’m afriad I already have cancer and that it’s going to advance so rapidly in 9 months, why would I provide it’s favorite source of fuel...SUGAR!?!  We all know cancer loves sugar so what am I doing eating so much of it!?  So for the last week or so I have looked at all my favorite sugary treats in a very different way.  I’m not cutting it out cold turkey at this point. Just drastically decreasing my intake just by being aware of what I’m putting in my mouth.

I’d love to hear your thoughts about sugar so feel free to leave a comment.

Until next time.

Monday, September 10, 2018

Family vaca update (sorry it’s so delayed!)

Wow.  I guess life has been passing by as I forgot to write an update to our vacation!  I completely thought I had and just checked it today and realized I haven’t.  Life has hasn’t changed much in two months as you can imagine. I’ll update you on our vacation and then fill you in on the little things.

Portland was absolutely amazing.  I’m sure you’ve heard ‘vacation with little kids isn’t really vacation’. Which is so totally true in the sense that you don’t really relax much.  I tried to go in with a mindset that we’re on vacation with no agenda or time requirements.  And this totally prevented lots of frustration and anxiety. You see, I have a tendency to plan every moment and be very punctual. Which is basically impossible with little ones in and of itself. And then add vacation to that and all bets are off.  So I just reminded myself daily that all that matters was our family time and our sanity.  Haha. And the trip was amazing!!  

If you remember our goals for the trip I’m sure you’re wondering if we accomplished them. Well, the kids definitely went to many many parks!  I think we might have missed one day of going to a park the whole time we were there. And then some days we went to multiple parks. So I think this evened it out and we’re safe to say they were able to go to a park every single day. The weather was amazing and we love enjoying the outdoors so I was totally happy hanging out at all these parks.  My son and I were even able to go on a nature walk with a friend and some family.  It was basically in the woods so we were able to enjoy the shady awesomeness. 

As for my goal of enjoying good food and desserts everyday was not difficult to accomplish.  At this point I can’t really remember what restaurants we went to but I do remember enjoying all the food we ate. Including the home cooked ones which were amazing.  And all the time spent with family made it all that much better.  

I don’t think my husband would say he accomplished his goal of eating lots of really yummy ice cream. We went to Salt and Straw once. I totally would have gone back but he didn’t seem too into it. When we got there there was a line out the door and around the corner. Which apparently isn’t uncommon and speak to how amazing the ice cream is. I was told by the guy behind us that he once waited for 45 minutes to get his ice cream.  We probably waited about 25 minutes. And let me tell you it was well worth the wait.  I got a berry, goat cheese, habenero ice cream. Sounds weird, I know.  But it was decadent.  So rich and sweet and spicy.  Yum!  My mouth is watering just thinking about it.  My husband ordered the typical chocolate brownie something or other.  He liked it, but didn’t think it was anything special. Haha. My daughter got the same (she sure does love chocolate just like her daddy). And my little man decided on a coconut strawberry and ate it all up like there’s no tomorrow. It was really yummy.  Man, I want to go back just for the ice cream.  Haha.  But my husband did buy ice cream at the store and ate it almost every evening we were there. Haha. So I’m gonna day he too accomplished his goal. 

I love that the kids just wanted to be active and outside when we were there and then Matt and I just wanted to eat. Haha. How priorities change when you get older.  Don’t get me wrong we enjoy being active as well. And there is not much better than being outside enjoying amazing weather. 

Trip home went extremely well just as it did on the way there. I’m so proud of my husband and I for keeping it cool and going with the flow on almost everything. Of course the week wasn’t perfect but we were able to enjoy it immensely!!

Okay, so as far as normal life is going. Like, I said, not much has changed.  My daughter did start first grade and does not like it at all. Haha. She is a bit of a drama queen and says ‘it’s so hard.  All we do is work.  We work every second of every day’. Cracks me up. I’ve been trying really hard to speak to her with as much positivity as possible. She has the tendency to be very negative and grasps onto any negative energy she can.  And boy has it helped!!  I can see the mind shift in her and it really makes it so much more pleasant to be around her. I just hope we can keep up this momentum. 

My little man slept, for the first night last night, in big boy undies and woke up dry!  He was so excited!  He will be 4 at the end of January and this has been quite the process of night potty training.  And I think we’ve finally done it!! Woohoo little man!


Okay, I will try my best to post in the next couple of weeks (instead of waiting 2 months) 😬

Wednesday, July 18, 2018

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. 

Monday, July 2, 2018

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)

Cookie day!

I haven’t made it to Hanny’s yet.  I was supposed to go see Justin Timberlake on November 29 with my sister in law and a friend.  We were g...