Hereditary Diffuse Gastric Cancer Webpage

Hey all!

Recently Karen Chelcun Schreiber (Founder of No Stomach for Cancer) started a webpage dedicated to Hereditary Diffuse Gastric Cancer (HDGC) which strongly focuses on CDH1 mutation as well as the most recent research regarding HDGC.   She works with Dr. Parry Guilford (Discovered the mutation and continues to do research for CDH1 mutations).

The mission statement:

“To support Hereditary Diffuse Gastric Cancer (HDGC) translational research that leads to improvements in the health and well-being of those affected by HDGC, and to provide relevant, reliable information and resources to help individuals and families understand their risk, make informed decisions, and advocate for themselves.”

I think this is such a great organization as the funding and donations to this group go directly to research for HDCG.   My hope is that there will be a better way to prevent HDGC for people with CDH1+ mutations than removing your stomach in future years.

Check it out:

Hereditary Diffuse Gastric Cancer


Ice cream

It has been just over two months since my last blog post. Time sure does fly! We are having a real summer here in southern Ontario – hot and dry. I have been spending much of this summer studying for an exam that involves progressing my diagnostic skills and treatment skills as a physiotherapist. But that is a whole blog in itself. Needless to say, I have been a little MIA from the blogging world.

But I’m back for another reflection post.

One food that I have always loved is ice cream. I have mentioned it many times in previous blogs and purchased the biggest cone to eat prior to saying farewell to my stomach. Not only is it delicious but often, eating a cone is associated with a fun social outing with friends or family.

Unfortunately, I still do not tolerate it well in larger quantities (i.e. greater than 1/4 cup). So every time we stop for ice cream, I am faced with a decision – eat it and risk feeling unwell (usually bloated, fatigued, and rapid heart rate) or kindly pass and often take a few licks off your husband’s or friend’s cone.

I came across a quote that states, “you miss 100% of the shots you don’t take” and I am not a person who likes using the phrase, “I can’t”.

Last night after a nice dinner with friends in Toronto, we stopped at an ice cream place called, “Bang Bang Ice Cream and Bakery“. They are a small ice cream shoppe that makes home made ice cream and apparently has some of the best ice cream sandwiches downtown. Once again, I was faced with the decision to pass or to try. This shop had a small 4oz size cup.

“You miss 100% of the shots you don’t take”

I ordered the 4oz cup of mint ice cream. Was it the best ice cream I’ve ever had. Yes. Was I scared to eat it. You betcha. Did I feel bad after? Surprisingly not as bad as I had expected.

Life is too short to pass on the things you love. Life is too short to be afraid.

You miss 100% of the shots you don’t take.

Happy August everyone!



Hey everybody! It’s been a couple of months since my last post and it seems only fitting to write another post as it is stomach cancer awareness month.  Since being diagnosed with Hereditary Diffuse Gastric Cancer syndrome, I have tried to make it a point to educate a couple of people each month about the CDH1 + mutation and stomach cancer.  Lucky for me, I work in a health care environment where I speak to a variety of people daily so the opportunities arise often.   Usually it starts with the patient casually mentioning something about me being skinny or thin.

Recently a coffee order was being taken at work and the conversation went something like this:

Co-worker: “Would you like a coffee?”
Me feeling my usual post meal digestion sleepy: “For sure”
Co-worker: “What would you like in it”
Me: ” Double cream”
Patient looks at me in awe, chuckles and asks:  “Double cream? How do you stay so thin?”

Depending on the patient and time, I often proceed by explaining to them about the CDH1+ mutation, the effects, the surgery and future breast cancer risks.  If time I’ll slide in the genetic testing criteria and close with, “thanks to science, I’m still alive and I’m forever skinny.”  We usually have a good laugh.

Not to overburden everyone with an abundance of information, here is the genetic testing criteria for CDH1 at Mount Sinai Hospital in Toronto:

“Eligible families who have at least two relatives with diffuse-type gastric cancer, at least one diagnosed under age 50, or families with at least three relatives with diffuse-type gastric cancer at any age. Families with once case of very young diffuse-type gastric cancer (e.g. under age 35), or families with diffuse-type gastric cancer and lobular breast cancer may also be considered.”

For more information on HDGC from Mount Sinai Zane Cohen Centre click here

For more information on stomach cancer, check out No Stomach for Cancer’s webpage



Both lines are the same length but may appear different depending on which one you are viewing

I recently saw a person with a tattoo of the image featured above.  It was all too familiar as I used to draw this as a kid.  I asked him, “does your tattoo have any particular meaning?”  He replied, “it means life is about perspective and can change depending on how you look at it”.    He had been through some troubled times in his life but had managed to persevere and come out on top.

On Friday, I was at the gym participating in a step aerobics class.  After finishing the first cardio peak track, the instuctors announces, “we just burned 600 calories!”.  In the past, I used to like hearing this as it meant that I was really getting a great work out as I was burning off all that iced cream.  However, now when I hear her announce that, the very first thing that pops into my head is, “how will I make those calories up?”.  Then the next track finishes and she hollars, “we burned another 300 calories”.  At this point I’m thinking, that’s 900 calories I’ve burned.  I’m going to have to do a lot of eating to make up for that.  It’s funny because this instructor probably thinks that the majority of people there are there to maintain or lose weight.

It’s funny how a simple messages can be perceived so differently.

It’s okay to have a bad week – an 18 month update

Early last year,  I blogged about Kubler-Ross’ five stages of grief.  It was more surrounding about my recent diagnosis of being CDH1 positive.  It’s applicable to a lot of life events and mourning the loss of your stomach definitely qualifies.

For some reason I had a difficult week a few weeks ago.  I woke up on Monday feeling extremely fatigued.  Not just tired but just not myself.  My weekend wasn’t too crazy so I couldn’t write that off as a reason.  Being in a healthcare field – I was able to pull myself together and continue motivating all my patients to persevere and deliver effective treatment plans but by night time I was wiped.  I thought I would just go to bed earlier on Tuesday and bounce back.  But same thing happened again on Tuesday.

By Tuesday evening, it all hit me.  My stomach is gone. It’s never coming back.  It unfortunate that I can’t eat certain foods and when I eat something that I can eat and is delicious, I can’t eat a lot of it.  I have to take a plethora of vitamins each morning.  I get lightheaded if I stand up too fast.  I have to wake up extra early so I have enough time to eat breakfast each day.   If I want to feel good for the morning, I have to eat oatmeal for breakfast.  I miss cereal.  I miss my stomach.

Maybe I should have waited another few years to have it removed? Maybe I could have lived my life a little longer with it? And so on and so on.

I don’t like people feeling sorry for me so I kept this all to myself.  Finally, Wed evening, I opened up to my husband and told him that I was having a hard week and that I really missed my stomach.  In a few simple words, he replied,

“Your stomach was going to kill you.  You made the right decision.”

I tell myself this most times when I start to feel frustrated by some stomachless challenges and I can get myself out of the funk within seconds but this time it wasn’t working.  It was good to hear it from someone else.

At the end of the week I randomly stumbled upon this letter that someone had shared on facebook.  It was all too appropriate and the timing was impeccable.

By that Friday I was feeling like my regular old self.

I am not writing this post for people to feel sorry for me. Please don’t. I am writing this to let all those CDH1 positive people out there who have had their Total Gastrectomies that it’s okay to have some time of weakness when you are always trying to be strong.

So following my not so good week, I’ve bounced back two fold. I’ve also made some great discoveries.

Right after surgery I tried not to combine liquids with my meals because it would fill me up too fast and I wouldn’t have room for those precious calories.  However, now I have realized that the more liquid I can consume BEFORE a meal, the easier time I have digesting that meal.  So now I try to drink some clear fluids prior to eating a meal to help get those digestive juices flowing or just prepare my new stomach for what is coming next.

When it comes to sleep, my sleeping patterns have never been the same post gastrectomy.  Some days I’ll sleep 10 hours a night and other times I’ll only require 4-5 hours.  Either way, I feel just fine when I wake up in the mornings.  After waking up at 4am back to back two days in a row I decided to investigate this a little further with my stomachless colleagues (thanks Steve, Rachel and Marne!).  Turns out we all have had this issues and we all figured it was just us.   I wonder if anyone else out there has this same issue?

I’m not so upset about this fact because I can get a heck of a lot accomplished when I wake up at 4 or 5am in the mornings.  I was happy to hear I wasn’t alone.

I stopped drinking Kefir a few months ago because to be honest, I didn’t love it.  But recently re-introduced it back into my diet and discovered that it has helped keep my GI flora happy and healthy.  I now try to drink a half a cup to a cup a day of it.  Kefir isn’t the most delicious but a necessity to staying fresh….if you know what I mean.

I’ve been doing strength training at the gym 2-3x a week and I am finally feeling like my strength is close to pre-surgery level.  I’m super happy that this has come back as I can now carry my entire grocery shop inside in one load.


The scale hit 118lbs this week and I was stoked. That is only 9lbs off of pre-surgery weight.  I knew it was likely temporary…and it was, but I haven’t seen that number in a LONG time.  I am sure that with continued strength training and continued eating, I will continue to gain weight.  After all, in the last year I’ve managed to gain 11lbs.

And to top it all off, I can now drink plain old water!  I still can’t chug it but it’s now an option. Some days are better for drinking it than others but I’m happy that it’s back on the menu.

It has taken me three weeks to hammer down and get this post out which only means one thing. Life is getting in the way!

Catch you all in a month. Happy Holiday shopping!






Three decades down

On the 22nd this month I celebrated my 31st birthday.  I couldn’t help but recap the 30th year of my life.  At the end of my birthday blog post last year, I mentioned looking forward to what adventured 30th year would bring. I can tell you now that there were lots of adventures.

Last October I was struggling to maintain my weight. I was sitting at around 106lbs. I had been back to work for just under two months.  I struggled to maintain my weight as the stricture I had caused a lot of personal and family stress.  Physically, I was in rotten shape and eating was a continual experiment.

Well I’m happy to say that I now sit between 113.5-115lbs. I have not seen 112lbs on the scale for a long time. I’m at the gym at least 2x a week and am working a 32 hour work week with a near full caseload.

I have grown up a lot over the past year and continue to enjoy all of life’s small things. I’m ever thankful to have such a wonderful support network because without it, I would be lost.

I’m thankful for my health. Things can change so suddenly. Last week my mom (who also had a total gastrectomy in 2010) suddenly developed abdominal cramping. Eventually the pain was so severe she had to go to the ER. After taking a CT scan and running blood work, the doctors determined she had a “small bowel obstruction” and recommended investigative surgery. Five laproscopic incisions later and three nights in the hospital – mom was discharged home. Long story short, my mom is doing well and her small bowel is okay. My mom is just over 5.5 years post TG and this happened in a flash which made me remember that things can always change with no rhyme or reason.

CDH1 mutation still leaves me with a 40-60% chance of developing lobular breast cancer and I’d be lying if I said I don’t think about it. This month I have thought about it more as it is breast cancer awareness month and I received my letter that it is time for my annual screen. I’m sure the screen will be fine but screening always is a reminder that CDH1 mutation still is with me and my cancer risk is still elevated. Will I get a prophylactic masectomy? I haven’t decided yet but I do know I am going to wait at least another 7-10 years before seriously considering it.

I celebrated my 31st birthday with an impromptu hike with Brandon to one of my favourite places in town.  It’s a peak that looks over the entire town and the view is most spectacular in the fall.  After the hike we went to dinner at one of our favourite restaurants, Taylor’s Tea Room.  Normally they only serve breakfast and lunch, but more recently they have started to serve dinner on Thurs-Sunday.  We arrived at the restaurant around 7:45ish to an empty dining room.  We ended up having the entire dining room to ourselves for our entire meal.  It was an experience that was extra special and something that we couldn’t have planned.

So the big question is, “Did I eat cake on my birthday?” Answer – yes, I did. Did I pay for it? You bet. Was it worth it? 100% it was.

Upper GI X-ray update – Good and Bad news

It’s days like yesterday that remind me why I have not returned to work yet and why I am still recovering.

Yesterday, I had my upper GI X-ray.  Since it was an upper GI x-ray, I was not allowed to eat or drink anything past midnight on Monday.  Fasting is difficult with a stomach and even more difficult without one!  Luckily my x-ray was at 9am (but I was told to be there by 8:30am).

Aside: Because I had to travel back to the big city, it involved starting my day at 5:30am in order board the train on time.  Mom and I calculated that from door to door, it takes about two hours to get to the big city.  The trip involves driving to the train station, boarding the train, switching to subway, and walking to the hospital.  To be honest, by car it isn’t much faster due to the ongoing construction on the major highways.

The trip to the hospital just about wiped me out because I didn’t have anything in my system and I was running on fumes.  There are a lot of stairs in and out of the train station as well as the subway tunnel and I was in need of a rest by the time we arrived at the radiology department.

Around 9:00am, I was called in and told to get changed into the hospital gown.  It is funny because the radiologist assistant looked at my mom first and then figured out it was for me.  Once in the x-ray room, I saw the assistant preparing the infamous gas pills and the barium.  I inquired, “Are those the gas pills?”.  He replied, “Yes”.  I started to dread what was about to happen next (remember the gas pill story from when I had my CT scan?).  Then the radiologist came in and introduced himself. I wish I remembered his name because he was a wonderful doctor.  After taking a brief medical history, I warned him that the barium may not go down because I have issues swallowing large amounts.  Also I learned that no stomach means nothing to expand with the gas, which means, no more gas pills!  I heard him tell the assistant to water down the barium 50/50.

The X-ray machine must have cost well over my net worth!  It had all the bells and whistles.  It had a moving platform that I stood on and a large drum in front of me which was the X-ray.  After some confusion between me and the x-ray assistant, I was able to safely get onto the platform and position myself into a toasting position with my full cup of barium.  The platform moved around and I was in position.  The radiologist  began his instructions, “take a small sip”.  I knew that a small sip wasn’t a problem, so down it went.  Next, “take a bigger sip”.  Again, I knew that this should be okay because I have done this with my water + orange juice.  Finally, “take a BIG sip”.  The look of concern must have shown on my face because he asked if I was feeling nauseous.  I started to imagine a game show host announcing, “will it go down?”.  This procedure was repeated again from a different angle.

Amazingly enough, I was able to complete the whole test without having any spit up issues.  Although, by the end of it I could feel things building up.

After the test was complete, the radiologist reviewed my results with me.  He showed me the imaging screen (and I wish I took a picture of it!).  Now the good/bad news.

Good news:

I’m not imagining anything! There is something wrong. There is an issue with my esophagus/jejuneum anastomosis (join between the two).   Why is this good news? Because now we know what is wrong and it can be fixed.  The alternative would have been that nothing is wrong and you are on your own.

Bad news:

I have a 5mm diameter space where food/liquid can pass through.  The radiologist had me dry swallow a few times with just saliva and I am sure that was to see if I could even swallow my saliva to determine the severity of the situation.  He told me that he was going to email my surgeon that day to let her know of the results.  He also hand wrote a note with the results on it to be hand delivered to her office this afternoon (she was only 5 floors above the department).  I started to realize that this is a semi-serious situation.

Here is an image of my x-ray that I requested for my blog from my surgeon’s assistant.  It’s not a great image but you can get an idea.  The red arrow points to the stricture.  Normally, the width should be the same as the esophagus, which is the darker tube above the arrow (around my spine).  I believe the dark cloud is the water or barium entering my small intestine.  Pretty cool, huh? This is why I failed to take a picture in the x-ray room, I was too amazed by the result.


Once I hand delivered the note to my surgeon’s assistant, she immediately contacted the on-call physicians who work with my surgeon.  One of the physicians came down to talk to me and she said that referrals have been sent out to two doctors who can look at me.  Since I am only 6.75 weeks post op, they do not know if they can use the balloon to stretch the stricture (this is what is normally done in this case as it is common after a total gastrectomy).  What they will do is an endoscopy to look at the stricture from the inside and determine the next course of action.  This may be a ‘little stretch’, no stretch, or revision.

Once I heard the word revision, my mom and I were surprised.  I really don’t want to go back into surgery.  I will do a liquid diet if I need to until they can stretch it.  I’m willing to puree anything in order to get it down at this point.  I can’t afford any more weight loss. I don’t want to go back in the hospital.  I think the doctor had to tell us this option because they need to discuss all possible outcomes.  Mom and I believe that I will just do a more liquid diet until they are able to do the stretch.  I can still eat some things and I’m able to somewhat maintain my weight. Nobody get too worried.

So now I am waiting to hear from the doctors that will complete my upper endoscopy.  I am hoping to get in within the next week.  As much as I try to eat, I am losing around 1lb a week.  My total weight loss is now 21lbs post surgery.  This morning I was at 108lbs.  Thankfully, people still comment that I look great and that I don’t look sick.

Stay tuned for week 7 update.

P.S. At the end of my day there was a huge rainbow over my house. Yet another sign that everything is going to work out for the best.


Post op day 27 – Throw back Thursday

Thursday May 22nd, 2014 – This was the last meal with my stomach – Fish and Chips with Mushy Peas.  See below.

imageAt the time it seemed like a great decision and it was delicious.  I regretted this decision two days later when I experienced the worst pain in my life due to gas build up in my abdomen.  I failed to remember the advice from the pre-op nurse, “eat a light meal before surgery”.  Good thing I didn’t go to the Mandarin!

Fast forward to post op day 26.  This is what I thought I could eat for my afternoon meal.  It was lunch #1. I eat like a hobbit now.  Breakfast, then two hours later, second breakfast.  Two more hours pass and it’s lunch, and then second lunch and so on.  Some of you may be wondering, will it always be like this?  The easiest answer is yes.  But life can get in the way and as you recover it is easy to miss meals which then results in weight loss.


Left over grilled chicken with grilled veggies and macaroni salad on a small bread plate.  I have learned over the past week that left over grilled chicken breast is not a good choice. I eat my food with a three strike knock out rule now.  If it gets stuck on first attempt, I blame myself for not chewing enough.  Stuck again, I blame myself for eating too fast.  The third time it gets stuck, I remember to not eat it again for at least another week or two.  After thirty minutes, I was able to eat all the grilled veggies and two macaroni noodles.  The eyes are bigger than the stomach…..well in this case, small intestine?

I have spent the last week trying to decide what to blog about this week and I have decided to put more detail about the actual recovery (diet, activity, etc).  I found that comparing my progress to other CDH1 bloggers helped to normalize my recovery.  I know that everyone is different but it still is better than having nothing at all.

Going into surgery, I believed my best friend next to the surgeon would be my dietitian.  I was wrong.  Although the dietitian was helpful for basic information like adding calories to meals, overall, much of the advice I have been given has not been helpful.  I learned this early in the hospital when I decided to take a lactaid pill before drinking some milk on the dietitian’s recommendation.  The next half hour I paid for it by having intestinal gas cramps for the next thirty minutes.  When inquiring about how fast I should be eating one cup of my beef consume I was told that I should be able to finish it in fifteen minutes.   At the next meal, I attempted this and paid for it again.  Most of the answers I have been given by the dietitian is try it out and see what happens.  It is not the dietitians’ fault for giving this advice, it’s just that there isn’t a lot of research out there on post prophylactic total gastrectomy recovery.  In my opinion, it’s something that is hard to give advice on unless you have actually experienced it.  The best advice has come from reading other CDH1 blogs as well as speaking with my mom who had the surgery just over 4 years ago.

I’ll just put a disclaimer here that I am not a registered dietitian and that this advice is just based on my own personal experience.

Here is a list of foods/drinks that I have found easiest to eat over the past two weeks being at home:

  • Cashews – full of iron and protein.  Very portable and easy to just much on
  • Activia Yogurt – filled with probiotics and protein.  I have also combined this with some orange juice and froze it to make yogurt Popsicles for a quick snack.
  • Cream of Wheat – also has some iron.  Mix it with lactose free cream as well as milk (or almond milk)
  • Hummus – I dip saltine or ritz crackers into it.  I have also dipped grilled veggies into it.  I loved it before surgery and I love it even more after!
  • Kozy Shack Tapioca pudding – It has a higher sugar content so don’t eat too much but great for a sweet treat
  • Split pea soup
  • Pizza and potato chips
  • Cheese and deli meats
  • Liverwurst
  • Potatoes
  • Frozen Banana “iced cream”
  • Water with a shot or two of orange juice

Here is a list of big wins for me this week that I would not necessarily recommend but I was super excited about to put back on the menu:

  • Lettuce and Spinach in a salad – No more constipation! Haha
  • Peanut M & M’s – YESSSSS!!!!!!
  • Tiramasu
  • Iced Coffee – made with cream and almond milk

These are foods/drinks that caused me issues:

  • Left over grilled chicken
  • Ensure Plus
  • Plain old water

In terms of pain management, I decided to stop taking Tylenol on Monday.  I stopped for two reasons.  I don’t like taking medication and I had been taking it for three weeks non-stop.  It was great because it helped me move but I also started to over do it in week three.  I decided that my pain level was enough to tolerate without medication and it would be a good indicator of overdoing it.  I am a big advocator of movement but I am also someone who will over do it and at this point the Tylenol was hurting versus helping.  I have been able to continue doing as much as I was able to do before with the Tylenol so this was a big win for me.

I still have odd pains around my abdomen every now and then which I attribute to nerves regenerating.  I am also numb about 5-10mm on either side of my incision.  I have a 70mm diameter circle that is numb to the left side of my belly button.  I have been working on helping the nerves regenerate by rubbing my hand around the numb areas as well as using a soft blanket on the sites for about 2-3 minutes a few times a day.  I have not started any scar tissue mobilization as areas are still healing and the surgeon recommended I wait until follow up (July 2nd) before I start to friction it or use any therapeutic ultrasound to heal it.

When it comes to activity I continue to make great gains.  This is my first week home without Brandon and I am doing well.  My mother in law and mom have been able to take me for outings as I am still not driving.  I was able to tolerate a trip to value village to look for some new clothing.  At this point it’s not worth purchasing brand new clothing because I’m still losing weight and I don’t want to have to replace it again in another few months.  Trying to find my size was an adventure but I figure I now hover between a size 3-4.  I used to be size 6.  Moving the clothing on the racks was difficult but I managed.  I always take a shopping cart with me on outings because I am able to last longer.  I currently sit at 112lbs.

I am feeling well enough to feel frustrated that I am not allowed to lift anything heavy.  It is amazing how many things you lift that are over 10lbs in your day.  I am looking forward to having my lifting restrictions removed so I can start to seriously strength train my core.  Which leads me to my next point, I have started to wake up with back pain and if I am walking for a prolonged period of time, I also have back pain.  Yesterday, I started to do some gentle Transverse Abdominus/Multifidus training while lying on the couch.  I was able to do 2 sets of 5 heel slides before I was fatigued.  Lame.  I think in a future post I’ll talk about my personal post op rehab as I feel that my physio knowledge has lead to such a fantastic recovery thus far.

Standing in one spot continues to be difficult.  I still find myself breathing apically when I am standing upright and need to remind myself to diaphragmatic breath because I can get light headed.  Flexing forward always improves breathing and now I fully understand why this is the resting position for people with respiratory issues.

I still require 1 hour naps daily to regenerate.  I am getting around 8-9 hours of sleep a night which is great for healing.  I am dizzy and light headed anytime I go from sit to stand.  The first few steps after getting up I always have gas which feels like a burp ready to come up but doesn’t.

There are activities that I have been missing this week like rollerblading, swimming, and going to the gym.  But, life is good. I don’t regret my decision.  You have to make the most of the cards you have been dealt.  I will get back to those things in good time.  Just think, 27 days ago I looked like this:


Post op day 10 – Christmas day all over again!

I woke up this morning, well rested and feeling almost normal, aside from the gigantic incision across my abdomen. Today was going to be MY day! I had a fairly solid sleep last night. I woke up in the middle of the night feeling hungry and needed to sit up and drink some water to ease the hungry/nauseated feeling. After this, I felt pretty good and was able to get back to sleep.

I woke up the second time to the doctor doing her morning rounds. She mentioned that today I would be starting….wait for it…SOLID FOODS!!! I was super, super excited. She also said that the kitchen would prepare a dairy free meal for me. I was really excited to say the least.

Instead of going for my usual walk after the doctor’s visit, I tried to bathe myself. Maybe this is too much information, but my armpits looked like a jungle!! I just had to get up and attempt to shave them. I hit another milestone because I was able to independently wash myself (not hair) with sponge bath. It took about 30 mins but I did it. After cleaning, I was wiped! I had to take a rest. The things you take for granted.

I tried to go back to sleep but at 9am it came…my breakfast tray! I sat up and looked and saw this.


Cheese! Cereal! Muffin! I immediately went for the cheese because I have been thinking about it for a long time. Even though I am allergic to dairy, I have found that some is better than others. I have been spoiled by having access to McGuire’s Cheese (a speciality cheese shop at home) and normally just eat cheese from there; however, this small slice of Cracker Barrel was the just the best thing ever. I went with protein first as well because the dietitian said it is better to eat protein before sugary foods and the next thing to eat was my multigrain cheerios. I alternated between the cheese and the cereal for the next hour and managed to finish all the cheese and about four spoonfuls of cereal. Even the soggy cereal was wonderful. I know that in a few years I’ll read back on this and think that I am crazy but for now, it’s all good! I watched Despicable Me during breakfast to help pace myself. Some parts of that movie are so funny and I had to splint with my trusty stuffed rabbit to avoid the pain of laughing.

My roommate was discharged today and I was really happy for her. She was a wonderful roommate and definitely a person with a lot of courage and strength. When she had a good day, I had a good day, when she had a bad day, I had a bad day. We were on the same wavelength. Every morning we would wake up and ask, “So, how was your night? Did you sleep? How do you feel this morning”. That would set the pace for the day. I am grateful to have been able to meet her and her family. Her battle with cancer will continue but I know she will be strong and win the battle!

My room was really quiet for most of the afternoon not having a roommate anymore. My friend came to visit me and we had a nice chat before Brandon showed up. Soon enough it was lunch time and Christmas all over again! I received this for lunch:


After a good hour, this is what it looked like:


I have learned how to eat properly. In the past, I could eat my whole dinner or lunch in about 10 minutes. In retrospect, I don’t even think I tasted the food. I think I just inhaled it. Now that I have to chew everything to a paste before I swallow, I have learned to appreciate the taste and textures of food.

I was pretty wiped after the morning’s activities and needed to rest for about two hours. Around 5pm my parents showed up and Brandon was relieved from duty. He stuck around for dinner though.

I know I am eating hospital food, and I am sure to anyone else, it would be disgusting. However, this has been like fine dining for me. Every meal is a surprise and it is all awesome.

Here’s a picture of me eating dinner. This is what it has been like for me for every meal thus far. I have also be come VERY protective of my food and I leave notes on my tray’s for the dietary aides not to take my tray in case I fall asleep when they come around. It takes me about 45 min to an hour to get through most of a meal.


I still get hungry and I still crave food. I don’t know when I am full which is the hard part because I just eat until I feel uncomfortable. Even though I still feel hungry, my system is actually full and I need to stop or I get a ‘stomach ache’. I currently weight 114lbs.

The greatest news of the day came at the end. During my evening meeting with the physician, she told me that I am clear to go home tomorrow!!! She is going to check in with me tomorrow morning to be sure but everything is looking good.

I am super excited to get home to my own bed. I am terrified about mobility in bed because I will no longer have bed rails and my obliques on the left are shot due to surgery. But I’ll get there. I am for sure going to be going to physiotherapy when I have enough energy to shower myself. Haha.

Farewell stomach tour – Japan Edition – 4 weeks to go!

On Saturday I returned from an adventurous trip to Japan.  We were continuously on the move and managed to cover six different areas of Japan over fourteen days.  I was hoping to write a blog last week for my weekly blog entry but obviously that didn’t happen.  The days were jammed packed and by the time I was back to the hotel, we were asleep.

I have thought a lot about how to do this blog entry because there is a lot to cover.  This being a blog about losing my stomach, I decided that I will focus on the dining experience.  Unfortunately, this was probably the least memorable part of the trip but also the most adventurous. Before I left for the trip, I was really excited to eat tonnes of Japanese food while I was away and put on some more pounds.  I now realize that this was not the most accurate assumption as majority of the Japanese people are thin.  I only saw one obese person during the whole trip and that isn’t a lie.

During the first few two days of the trip, I started to worry about what we were going to eat for the following week and a half.  Due to the Jet Lag (13 hour time difference ahead), I did not have much of an appetite.  That combined with the different cuisine, did not make a great combination.   As the trip progressed, we all became better at finding foods that we enjoyed eating but to be completely honest, the beginning of the trip was rough.

I realize that Japanese food here is NOT Japanese food.  The flavouring in Japan is completely different than western flavouring.  There is also this Japanese mayonnaise that is on about 70% of the food.  I am not picky on foods but mayonnaise is something that I try to avoid as it often makes me feel ill.  So this didn’t help, although near the end of the trip, I figured out how to say no mayonnaise which was helpful.  Here are some pictures of what we were up against during the first few days.


Japanese Pizza – Seaweed, Japanese Mayo, and green peppers or green onions?

From left to right - Cold pickled Octopus, soft tofu, something else pickled

From left to right – Cold pickled Octopus, soft tofu, something else pickled


Noodles, scrambled egg, green onions, raw egg with fondue cheese on top all on a hot plate

Also, majority of the Japanese restaurants display what they serve using plastic models of the food in the restaurant window.  The models did not do the food any justice on our opinions. Finally, majority of the menus are not in English, so you are left to look at pictures and try to interpret what the restaurant has to offer.

Plastic food on display in front of restaurants

Plastic food on display in front of restaurants

We all started to worry that we were going to starve in Japan.  Haha.  I believe the turning point came on the third day when we discovered that there are these bakeries located underground near all the train stations.  They were filled with fresh baked goods consisting of pastries filled with a variety of items. Some were sweet and some were savory.  I could not have been more happy to find some food that was easy to find and easy on the stomach.  This was also the day we discovered that there was a small grocery store below our hotel and it had some fresh produce (bananas, apples).  Here’s some pictures of some goods that I was able to pick up at various bakeries throughout the trip.

One of the many bakeries we visited

One of the many bakeries we visited

Pizza and a hashbrown

Pizza and a hashbrown



Green tea bun

Green tea bun

Close up of the description - some of the bakeries did not have English explanations though

Close up of the description – some of the bakeries did not have English explanations though

The reason we went to Japan was for our friend’s wedding.  The meal there was a combination of western and eastern food.  It was a large meal and I knew we were up against something when I saw the place setting.


We had an eight course meal at the wedding and I was only able to eat about half of it.  Because I had not been eating much during the first portion of the trip, my stomach size probably shrunk and I couldn’t consume as much.  Here are some pictures of some of the courses.

First course - salad with chicken

First course – salad with chicken

Second course - mystery square

Second course – mystery square

Third course – crab bisque with a pastry on top (I already broke it before I took the photo)

Fourth Course - Lobster

Fourth Course – Lobster

Fifth course - Grilled Salmon

Fifth course – Grilled Salmon

Sixth course was a small bowl of lemon sorbet to cleanse the palate. We thought we were done and then this showed up as the seventh course

Sixth course was a small bowl of lemon sorbet to cleanse the palate. We thought we were done and then this showed up as the seventh course.  I was too full to eat at this point but my friends say it was the best steak they had ever eaten

Eighth course - Dessert - creme brule and wedding cake

Eighth course – Dessert – creme brule and wedding cake

After eighth course - Sushi!!  Prepared by the chef.

After eighth course – Sushi!! Prepared by the chef.

If this wasn’t enough food. After the wedding we went to the second wedding party.  In Japan, the weddings end fairly early and there are after parties.  At this party guess what – in case you were still hungry, more food!

Salad with Bacon on top

Salad with Bacon on top



Chicken and fries. Which we were convinced were McDonald's Fries.

Chicken and fries. Which we were convinced were McDonald’s Fries.

The day after the wedding. We were treated to a night at a traditional Japanese hotel – Ryokan.  It was a hot springs resort and it was awesome.  The dinner on the other hand was traditional Japanese food and a lot of it was a mystery to me.  I didn’t feel as bad though because my friend’s new Japanese wife also did not know what some of it was.  Not to mention it was a twelve course meal.  I gave up after the third course and stopped taking pictures. But here is a sample of what we were served.

First Course

First Course – notice the baby shrimp on the salad.  I couldn’t eat them because they were looking at me. But I ate everything else minus the octopus.

Second course - I was excited for the sashimi but the first one I ate (top right corner) was so chewy it put me off of the rest of it.   I felt bad wasting it.

Second course – I was excited for the sashimi but the first one I ate (top right corner) was so chewy it put me off of the rest of it. I felt bad wasting it.

Third course - Miso soup.   I really enjoy miso soup and ate most of this. Minus the tofu which my friend explained as as wet booger.

Third course – Miso soup. I really enjoy miso soup and ate most of this. Minus the tofu which my friend explained as as wet booger.

I think out of all the things we ate over the course of the trip, my favourite was the Yakiniku.  Basically, you order a plate of raw vegetables and meat and you grill it on your own personalized grill which is built into the table.  It was really tasty and filling.



Finally, there is always room for ice cream.   I definitely made up for some lost calories through frozen treats.

Green tea soft serve

Green tea soft serve

The box on top is a waffle filled with ice cream that you can get out of the local vending machines

The box on top is a waffle filled with ice cream that you can get out of the local vending machines

Ice cream waffle!  All just for 150 yen (about $1.50 Canadian)

Ice cream waffle! All just for 150 yen (about $1.50 Canadian)

McFlurry! It was tough ordering this on in Japanese but I learned that it's called a Flurry in Japan.  Notice the portion size.  Cost 230 yen ($2.30 CAD)

McFlurry! It was tough ordering this on in Japanese but I learned that it’s called a Flurry in Japan. Notice the portion size. Cost 230 yen ($2.30 CAD)

More green tea soft serve - this one had corn flakes on the bottom for an extra crunch.  The Hello Kitty on the side is a Hello Kitty Pancake

More green tea soft serve – this one had corn flakes on the bottom for an extra crunch. The Hello Kitty on the side is a Hello Kitty Pancake

One thing I can’t forget to mention is the abundance of vending machines in Japan.  The majority of them have beverages – hot and cold – in them. Some have ice cream and others cigarettes. They are everywhere and you can find them in the most remote places – like in the middle of the country on a non busy street.  You can be sure that you will never go thirsty in Japan.  The beverages range from 110 yen to 150 yen ($1.10 – 1.70 CAD) depending on where the machine is located.

Vending Machines in Japan

Vending Machines in Japan

Anyhow, that is just a small sampling of what we encountered in Japan.  Once I get over this Jet Lag, I may make more posts about the actual trip which was amazing and wonderful.   I would return in a heart beat.  You could write a whole blog just based around Japan.  I just want to re-iterate though, that the food in Japan was just a small portion of my trip and also the hardest part for me.  I lost about 4 lbs during the trip so now it’s time to try put it back on.  Yahoo!!


Heartburn, and Hives and Stomach aches, Oh my!

For as long as I can remember, I have always been prone to stomach aches, random hives, and heart burn.  I used to just sit around and wait for them to go away.  I would attribute it to eating too much too fast or the wrong thing.   After getting the CDH1 diagnosis, I can’t help but be a little nervous about each stomach ache and heart burn episode.

While I was waiting for the CDH1 blood test results to come back, I started seeing an Naturopathic Doctor to try figure out why I was constantly getting stomach aches since they have been getting worse over the past year or two.  I related it to job stress (even though my job was not very stressful, I must have kept it all inside…get it..haha).  I was starting to think I may have some sort of wheat allergy.  She ran a IgG food sensitivity panel and it came back with surprising results. (Click on it to see it clearer)

My IgG allergy panel

My IgG food sensitivity panel

So basically it’s broken down into sections  Anything in red is something my blood really reacted with and anything green, I’m in the clear.  Clearly, I am sensitive to milk products, whey, and….wait for it…..crab. Who knew? For those of you who know me, know that I LOVE ice cream. So this is a little unfortunate, however, I still plan on eating it…just in moderation now.  Those who have had total gastrectomies are usually sensitive to sugary foods anyways, so this is just another reason to decrease my intake.   The results were definitely not what I was expecting but it’s nice to have a possible answer to why I keep getting these stomach aches.  Eases my brain a little bit.  I will be discussing my results with my Naturopath in the new year.  It’s funny how I started seeing her just as all this was coming about.  She can help me balance my nutrition post gastrectomy as well.  Everything for a reason, right?

She also mentioned that stress can be linked to cancer.  It made me think back to my six years of university, one big board exam, planning a wedding, and buying a house over the past few years.  All walks in the park right?

Needless to say, I started to consider Yoga more seriously soon after the diagnosis.  Haha.