Big News

First, I want to inform you all my biopsies came back negative.  I had been pretty anxious and had it all worked up in my head that I’ve had this aggressive cancer growing inside my stomach that I nearly burst out in tears when my gastroenterologist told me everything looked good when he was doing the scope.  Such a sense of relief in my mind. It’s then than I realized I’ve been more anxious and worried than I realized.  One thing on my list of things to get lined up is speaking to a counselor/therapist.  I’ve seen one several times in the past and they are so helpful in so many ways.  

Anyway, more exciting news is my surgery date has been moved up!  Originally I was scheduled for March 21 but it turns out my surgeon (Dr Davis at the NIH) is going to be out of the country for most of the month of March. They gave me the option to move the surgery up a month or back a few weeks. After much deliberation and talking with family and work, we’ve decided moving it up to Feb 21 is what is going to work best for our family.  Plus when we were in Maryland a month ago I had been wondering to myself if I should have just had the surgery then. Kind of regretting my decision to wait until March. There are so many factors that weighed on our decision but I think one of the most influential was the idea that if we waited until April my daughter would be out of school for summer break for the last portion of my 8 week recovery. I thought that would be exhausting have both kiddos home all day.  Anyway, so now it’s crunch time. 

I’ve put 2 stomach farewell parties on my calendar. One with work family where we are going to restaurant hop. We’ll start at one place for appetizers, then head to a yummy taco joint for delicious tacos and margaritas, then head to a local ice cream shop to finish off our meal. The second party will be with close family where we will hang out at the Orchard in Phoenix that has a couple restaurants to grab food from and a treat shop with lots of goodies. They have an outdoor courtyard area the kids can run and play while we enjoy good fresh food.  

So my hubby and I will be headed to the NIH the week of Feb 18 to prepare for surgery on Feb 21.  I’m so ready to get this done and move on with my new stomachless life. I know the road is going to be long and rough but what better time to start the process than now. I feel I’ve had ample time to physically and mentally prepare and why wait any longer.   Don’t get me wrong, I’m so nervous!  Such a major surgery and all of the unknowns are plenty enough to cause lots of anxiety and stress.  But no sense in worrying and getting all worked up in those things I can’t foresee or control. I did my due diligence in selecting a surgical team I know will take the best care of me.  Random thought...do you think the OR staff and my surgeon will let me have a mini dance party before they take my stomach?  I think that would be so fun.

Okay, I’ll be back in a couple weeks to fill ya in on surgery prep, how I’m feeling, and how much fun we had at the stomach farewell parties. 

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)

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. 

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.

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.

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) 😬