No Stomach, No Problem

This time last year, I just been moved to the ward from the step down unit at the hospital. I had survived my first two days without my stomach and was doing well. I didn’t know what the next year of recovery was going to look like but I knew there was going to be an adventure ahead.

Jump forward 363 days later.  I’ve lived for a full year without an organ that tried to kill me.  I have tried to look at every day with positivity and optimism but I can assure you all that not all of the last days were hearts, sunshine, and rainbows.   Majority of my days are great days but there are also days of challenge and frustration.  It’s hard to reflect on the past year without becoming overly emotional as it was definitely a year of personal growth.

I’ve learned that perspective is everything and it goes a long way. From the day I found out I was CDH1 positive, my perspective on life has changed and although I was optimistic before, I became even more so. It may seem odd to say that I became more optimistic when finding out I have a gene that puts me at a very high risk for stomach and breast cancer, but it’s the truth. I was given a choice to stop cancer before it stopped me. I also knew that feeling sorry for myself would get me no where so mine as well make the best of it!

When I have a hard day, Brandon reminds me that the alternative could have been a lot worse. It is all too true. When I look back over the past couple of years, I did have a lot of heartburn and the indigestion was worsening. I’m pretty sure that I would have died of diffuse gastric cancer if I did not remove my stomach. So, if I have issues eating, I just take a moment and try again later. If at first you don’t succeed, try, try again, right? If I had an issue rolling over in bed or lying down, just braced yourself and told myself that it will get better. When there’s a will, there’s a way. Any day I can get out of bed is a good day because there are so many people who cannot.

I’ve also learned that you should never take your family or friends for granted and that you are more loved than you know. I’m so thankful for all the support from family and friends during my recovery. Words cannot even come close to expressing how thankful I am for everything. Without friends or family, this year would have been a lot more difficult. I also developed a great network of new friends who also are stomachless due to CDH1.

I’ve struggled a lot with my work/life balance. Prior to surgery, I was a go-go-go person.  Even in the hospital I would ask the doctors when I could start doing this or that and they would remind me to take it easy because I just had a big surgery.  When I could not consume enough calories, was forced to cut back on my activities which was a really difficult thing for me to accept.  My body was telling me to SLOW DOWN.  I think the hardest hit was when I tried to up my work hours and then realized it was not working and had to cut them back down again.   Being a physiotherapist was and still is part of my self identity and something I really love doing. Cutting back was a difficult thing to accept and I am still working on returning to full time work. Thankfully, the company I work for has been incredibly understanding and I have been able to supplement my hours with administrative duties as I am now managing a few clinics in the company.

My energy level has still not bounced back to 100% and I am trying to push myself hard again because I’m not willing to accept that this is the way it’s going to be for me for the rest of my life.  It’s like when you first start to work out. At first you are really tired and sore, but once you push through it, you are a lot more in shape and have increased endurance.  I’m not back to normal yet, but I remain optimistic that I will get there if I just keep pushing myself a little bit at a time.

Although I’ve been told it is one year recovery post total gastrectomy, I know I’m still improving. I’m able to eat as much as you’d expect a thin person to eat and my weight is maintaining at a healthy 110lbs. I am a hobbit and I eat second breakfast, lunch and dinner. I have difficulties staying hydrated but I’m working on it. I’m always the last one to finish at the dinner table but that’s okay.  My baseball season just started and I was able to jump back into it as if I had never left (although I was sore for 3 days after…haha).  Thankfully, I’ve been able to return to the activities I participated in prior to surgery.

Living without a stomach is not a bad thing. It’s just different. Depending on how you look at it, it could be one of the best or worst things that happen in your life. No stomach, no problem.

The last meal my stomach ever contained

The last meal my stomach ever contained

Day 2 stomachless!  Feeling good with that pain pump

Day 2 stomachless! Feeling good with that pain pump

Hours spent in this area of the couch last summer

Hours spent in this area of the couch last summer

Realizing that my swallowing issue wasn't normal.  Stricture followed by a series of dilatations.

Realizing that my swallowing issue wasn’t normal. Stricture followed by a series of dilatations.

 

Breakfast 1 year post op. Takes about 20-30 minutes to finish it all.

Breakfast 1 year post op. Takes about 20-30 minutes to finish it all.

Incision 1 year post op - bikini worthy? Why not.

Incision 1 year post op – bikini worthy? Why not.

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On the road without a stomach

I’m sure at this point, people are wondering….where have I been?  It’s been a busy month to say the least. So many exciting things have been going on and just as I’m going to write the post for my past exciting adventure, another one creeps up.  This post will focus on the past two adventures – Philadelphia and Cuba.

I’ll start with No Stomach for Cancer’s Spotlight on Gastric Cancer in Philadelphia last month.  I’m still glowing from the experience.  Not only did I get to meet Dr. Parry Guilford and his research team, but I also had the opportunity meet many people from the No Stomach for Cancer community.   Many of these people have provided me with much support over the past year with CDH1.  In addition, I also had the opportunity to share a meal with Marne, a fellow CDH1 blogger, and her husband Kyle.  The funniest part was that Kyle was actually the minority at the table – being the only one with a stomach.

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To save you from the bore of all the details of my trip. I’m going to list a few of my highlights from the trip (in no particular order).

1) I was lucky to be able to travel to this conference with my mom.  Many people there had lost parents or other family members to gastric cancer and I felt so thankful that my mom and I could enjoy this experience together.

2) I was in a room with many other people living without stomachs. When am I going to be in a room with that many stomachless people?!?!

Thanks to Dr. Parry Guilford and his team (front and centre), we can all live to tell the tale

Thanks to Dr. Parry Guilford and his team (front and centre), we can all live to tell the tale. Everyone in this photo (except for Dr. Guilford) live without stomachs!

3) I was able to network with others in the No Stomach for Cancer community.  One of my goals of attending the conference was to learn more about pregnancy post gastrectomy.  I was able to spend a lot of time with one woman who has been pregnant twice post gastrectomy and is doing well.  It was great to share stories and increase my knowledge that pregnancy post gastrectomy IS possible although classified as high risk.

4) Mom and I realized that we really are cheap dates and were able to split every single many meal throughout our trip – yay no stomachs

5) I was able to see Philadelphia – including the Rocky Stairs.  Only seems fitting given the challenges I’ve overcome over the past 12 months.

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At the top of the Rocky Stairs at the Museum of Art

6) As a physiotherapist – I noticed that many people who had gastrectomies, also had the same slouched over posture while sitting, standing, and walking.  It’s something that was really eye-opening and I’ve made a bigger effort in becoming more body aware and correcting my own posture as I too fall into this category.  I would advocate for all those who have had a gastrectomy to see a physiotherapist to avoid long-term consequences of having an the abdominal surgery.   (How many of you just checked your own posture?)

Phili was definitely a great experience and I hope to be able to attend many more events like this in the future.

The second big travel trip I have successfully survived was Brandon and my recent trip to Cuba.  I had a great trip with majority of it sitting in the sun and one day trip to Havana.  However, I realized that traveling without a stomach has it’s challenges but it’s doable.  When you travel, you often will go for long periods of time without eating a meal.  Often you are required to be at the airport 2-3 hours early and then you have your plane ride.  By the time you get to your destination and find food, it could be hours later.

I had eaten breakfast around 8am at the airport but didn’t eat another sit down meal until 4:30pm.  At that point, I was tired, weak, fatigued, and had a massive throbbing headache.  Thankfully, Brandon was able to find us food at the resort and we were able to eat.  I instantly felt better and the headache was gone.  I don’t think I’ve ever experienced that before since surgery so now I’m fully aware of the consequences of letting yourself get low on food stores.

Often I will compare this feeling to a video game.  You are a character running around in an adventure and your health bar begins to run low. At first you are so fast and charged but as your energy level depletes, so do you.  BUT, as soon as you eat or restore your health, the energy bar instantly goes up and you feel instantly better.  It’s amazing how much food does for you.

Brandon and I ate half of our meals together and half of them apart.  At home, we eat together at the dinner table, but when Brandon finishes, he can go do other things while I finish eating.  However, in Cuba, he would finish his meal and then patiently wait for me to finish.  It wasn’t necessarily bad, but definitely different.  Plus, the wait staff are so efficient that once they notice your plate isn’t full they try to take your food away.  This happened a lot for me since my plate was never full and I took many breaks.  Most of the days when we ate alone, I had to do Sudoku puzzles or something to distract me or I would eat too fast and pay for it later.  On the plus side of things, neither of us got food poisoning…but wondered if it’s even possible without a stomach?

I brought oatmeal for a snack because I figured they didn’t have it in Cuba and it was a good thing that I did.  I have learned that oatmeal is something I can’t go two days without and definitely a staple in my diet.  Also, I would often go on my daily scavenger hunt to find bananas at the buffets.  When I found them, I would always take a handful and sneak out of the restaurant.  Banana’s are another staple in my diet.

I was concerned also about what I would drink at the all-inclusive resort since many of their beverages are sweetened.  On the second day I took a risk and ordered a pina colada and was fine.  Big win.  I’m assuming I was okay because the juice and sugars were all natural, but who knows. I was pretty happy.  Since I still have difficulties drinking a glass of water, I was able to water down the slushies to create my usual 1/2 juice, 1/2 water combinations.  There also was an ice cream bar and I was able to eat a scoop of ice cream and feel okay.  Double big win.  I have noticed my tolerance for sugar has increased as long as I pace myself…not sure if that’s a good thing though…haha.

Before we left for our trip, I had to go out and buy a set of new bathing suits since all I owned were bikini’s.  I ended up picking up a few nice tankini’s a few days before the trip so I could keep my scar out of the sun. However by day two, I caved and rocked the bikini for a day.  There were people of all different body types rocking the bikini, so I figured, why not?  If anyone asked what happened, I sure had a good story to tell.  I think that day was huge and more of a celebration in terms of accepting my new body image and I was proud to overcome that barrier.

So that’s my mini travel blog about traveling without a stomach.  I have much more information to share but I’ll be back soon to write my mandatory gastrectoanniversary blog.  This time last year, was my last day with my stomach.