Perspective

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

 

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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.

Pancakes are back on the menu!

About a month ago I reached out to my fellow stomachless friends about some breakfast ideas that wasn’t oatmeal or eggs. I learned that they all could eat pancakes. I was both shocked and excited with this information.  I had been avoiding pancakes for the past year because every time I ate them, I would end up feeling ill and falling asleep. Steve suggested I try birch benders paleo pancake mix. Sadly, we quickly learned that they cannot ship to Canada so I resorted to pintrest to find a paleo pancake recipe. Low and behold, I found one and have been eating them every weekend.  
The biggest difference was that it used almond flour instead of regular flour.  I also found a great waffle recipe using the same principle.

I haven’t been bold enough to put my usual peanut butter or syrup on them yet but I have put chia seed blueberry jam on them and have been fine.   Needless to say, I have been eating pancakes every weekend since this new discovery.  The almond flour can be more expensive but it’s totally worth every penny. 

Pancakes and Waffles are back on the menu!

The Starbucks Experience – a 2 year, 4 month update

One of my new favourite things to do is purchase an expensive delicious beverage from Starbucks and spend the next 1-2 hours blogging away or writing in my own personal journal.   Why do I purchase a six dollar coffee when I could just make one and write in the comfort of my own home?   It’s all about the experience.  Plus, it takes me a good hour to finish my grande flat white latte.  There’s something about observing the hustle and bustle of the world around us.   People coming, people going, long time friends meeting up after a year of not seeing each other, parents saying goodbye to their kids who are going off to university, widowers and widows, business people doing business things, students studying, and me – the stomachless blogger. 

The interesting thing about having a health scare is that it changes your perspective on life.  It forces your to slow down and evaluate where your priorities lie.  It shakes you out of your normal routine and forces you to develop as an individual.  You truly understand how many people love you and are supporting you.   I realized that everyone is writing their own story that I may know nothing about.   Maybe that’s why I have taken a new love to hanging out in coffee shops.

Cheers!
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The things I miss – 2 year, 2.5 month update

Hello everyone!  It’s been a few months since my last blog post but it’s time for another update from your stomachless friend.

The surgeon told me that it takes about a year to recover from a total gastrectomy.  Since I had a few complications post surgery,  I was a little behind.  I’m now two and a third of a year post total gastrectomy and although I think I am still improving, there are things that I just shouldn’t do or eat anymore (although, I do cheat sometimes but accept the concequences).    I’ve decided to compile a list of things that I have particularly been missing over the past few months.

– Ice cream – 

I miss eating a full single or double scoop of ice cream.  Even a “kiddie” scoop can give me issues but sometimes I take one for the team.   I also miss choosing whatever flavour I want sugar loaded or not.   Now I read all the labels and choose the one with the least amount of sugar and the most amount of protein (i.e. Nut filled). 

– All you can eat Sushi restaurants –

I tend to order off the a la carte menu these days. I also have to make careful decisions on which ones to eat as the rice takes up a lot of real estate in my intestine.  I also miss eating sashimi. It’s just not the same when you have to chew it a whole bunch of times before you swallow. 

– Choosing a meal at a restaurant without considering the concequences – 

Is it on a bun? Is it heavily breaded?  Is it deep fried? All of the above will result in brain fog. Does it have a lot of leafy greens or heavily cream based? Prepare for bloating!  I often choose meals heavy on the protein side.

– Purchasing new foods without reading the label at the grocery store –

If I want to choose a new food to eat, I always read the label.  If glucose is the 1st of 2nd ingredient…pass.  Too many additives…also pass. The result is abdominal discomfort. 

– Hamburgers and hotdogs with the bun –

This is especially hard because it’s BBQ season.  If I eat the bun, I often can only eat 1/4 of the burger.  It’s just too filling and it also gives me abdominal discomfort and brain fog. 

– Sandwiches – 

I have yet to eat an entire sandwich to date.   Again, the bread causes issues.

– Starbucks –

I still go to Starbucks and usually just order the regular coffees or tea.  But recently I had a good chat with a Starbucks employee who gave me ample suggestions for beverages that would be less sweet.  The passion fruit iced tea lemonade without any sweetener has been a win for me. I have started to combine cold tea with lemonade at home and it’s been great.  Also, ask them to make your drinks without the syrup (or less syrup). It’s basically liquid sugar.   This will open up a whole new world of opportunities.   

– Being able to function on an empty stomach – 

If I don’t eat every 2-3 hours, I start to fade quickly.  When I had my stomach, I could miss meals and be okay. I would be hungry but I could still function.  Now when I miss a meal, I start to get tired and if it goes long enough I start to feel unwell.   Sometimes I just don’t feel like eating all the time.  Food is medicine. 

Whenever I find myself missing these things, I remind myself that I am so fortunate to have the opportunity to stop stomach cancer before the cancer stopped me.  In the grand scheme of things, all of these things are so minor compared to all those fighting a battle who did not have this opportunity.  Ice cream vs. Stomach cancer…I’ll forgo that 2nd scoop. 

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Hold that bun! (I also didn't eat all of this food but got 1/2 way!)

Two years! – a 24 Month update

Today marks two years since I said farewell to my stomach. Do I miss my stomach? Yeah, I still miss it. But as time passes I learn more and more about living without the organ that would have killed me.

I’m currently sitting at 120lbs. I’m starting to look like I did prior to surgery. Afterall, I’m only 5lbs off. However, I am more lean than I was before surgery. No complaints. For those of you who are afraid of nor gaining the weight back, it will come back but it takes time and effort.

I eat a lot. A lot. I’ve never counted calories but I eat frequently. I believe this has contributed to gradual weight gain. The other day I was offering my brother some snacks from my backpack as it was near dinner time and he hadn’t eaten yet.

Me: “Banana?”
Brother: “no thanks”
Me: “Trail mix?”
Brother: “no thanks”
Me: “Starburst candy?”
Brother: “no thanks”…pause….”how much food do you have in there?”
Me: Laughing, “granola bar? Lifesavers? Peppermint?”

I always have food on me. The fear of needing food and it not being there still sits with me. When you need food and you don’t eat, things go downhill pretty fast. Nuts are my usual go to food. I also still like “kind bars” and “quest bars”.

I can tolerate most foods now. I can eat sweets but in moderation and spaced out overtime. Two weeks ago I learned I can eat ice cream cake. Huge score!!!
On Friday, I ate half 1/4 of an assorted subway sub and 1 cookie and felt not too bad. If given the choice, I still avoid bread due to the carb crash but I’m able to eat it in small quantities without dumping. I miss eating sandwiches so sometimes I eat them and deal with the aftermath. I call it foggy brain.

My energy levels have not returned to where they were before surgery. I am not sure if they will. Brandon said I lost my energy storage tank so fatigue hits me faster. Sometimes I can go all day and other days it’s like I haven’t slept in days. Pacing is key. However, sometimes I get frustrated that my energy isn’t where it should be and just push through the fatigue. I’m still unsure if this will help me overtime or just lead to burn out.

I am able to work about 30-32 hours a week comfortably. This allows for a good work-life balance. It took me a while to understand that this was my ideal balance as I used to work 42 hours a week and man the house. I am working on accepting that 30-32 hours as a physio is what I’m able to do now. It’s been a tough fact to swallow (pun intended).

As I look back over the past two years losing my stomach has been more of a mental struggle vs. physical. The surgery was the easy part. When you are super healthy and decide to have a life altering elective surgery based on statistics you have to be mentally strong.

I have good and bad days. The bad days aren’t even that bad anymore. But on those not so good days, I’m thankful that I have a strong support system in place. Not only do I have my family and friends, I’ve made great connections with people around the world going through a similar situation.

I often read the posts of people early out of surgery and remember those tough times just after surgery. I also read back through my own posts to see how far I’ve come. Time really does heal. For those just fresh out from under the knife – hang in there!

As my life returns to a consistent normal, I find myself searching for interesting topics to blog about. Someone once told me that I will stop blogging when I feel like I don’t need the blog anymore. Although I’m not fully ready to stop documenting my adventures, I may be scaling back the frequency of the posts.

Thank you all for following me over the past two plus years. Life is all about celebrating the small things. Keep smiling!
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Feeling thirsty? – a 23 month update

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One of the biggest things I struggle with is staying hydrated.  Prior to surgery, I would easily consume 2 litres of water a day.  Now, I will rarely drink greater than 1 litre of liquid a day and on average I consume around 500ml.  I’m lucky, I never lost the ability to feel hungry post gastrectomy.  After my stomach was removed and I was allowed to eat again, I would eat anytime my mind told me I was hungry.  I didn’t want to lose this mind/body connection so like Pavlov’s dogs, anytime I would get a hunger pang, I would eat.   Eating was key early on.    I understand how it can be tough for people to lose weight due to the association between the brain and hunger.  If there wasn’t an association than I shouldn’t feel hungry since I don’t have a stomach and therefore don’t have the neurotransmitter that is released to the brain to make you feel hungry.

I have heard that if you feel hungry, you may just be thirsty instead.  It is hard for me to distinguish between the two but more recently, I have tried to choose liquid instead of food when I get this feeling.  About 50% of the time, I no longer feel hungry after having a few sips of something.  The other 50% of the time, I don’t feel hungry anymore but instead I feel a little faint (process of elimination, body needed food).

Water is usually available most places but when you have an issue with drinking water, what do you do? I didn’t realize how many sugar loaded beverages are out there until you are looking for something specific.  Movie theatres are the worst. Most of the time I bring my juice/water combo or purchase a tea.  Recently, I have tried to bring a canteen with me in an effort to stay more hydrated.

It’s funny that the best beverages to go down the pipe is coffee, wine or juice+water.   I try not to drink too much coffee because I don’t want all the caffeine so often I resort to decaf. Carbonated beverages are the worst. Darker beer is better than light.  Wine and Caesars are smooth sailing.  Someone must be trying to tell me something.

For some reason, drinking water post gastrectomy seems to be an issue for many people.  When I asked a dietitian about it, she had no idea.  I think it has something to do with the surface tension in water. Ice cold water is easier to drink vs. warm water.  Filtered water is easier than tap.  If you think back to basic science class, when you placed water in a test tube a meniscus formed. I think that may happen in your esophagus as you swallow combined with some air make it feels like you could be swallowing molasses.

Maybe this is TMI (too much information), but I often monitor my hydration status by the colour of my urine. Also, after consuming a glass of liquid, it will often go right through me over the next 30 minutes to an hour.  I am guessing that it is a combination of having less storage space as well as regulating sphincters from my stomach and that my kidney’s are super efficient now due to my lack of liquid consumption.

It always amazes me how the human body can adapt.  Bottom’s up!

 

Cruising stomachless style – a 21 month update

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There’s something to be said about cruising without a stomach.

Late last year my husband and I booked a cruise to the Carribean with another couple.  None of us had ever cruised before but thought it would be a good trip as we heard that there is something for everyone.

Prior to leaving, I had some fears about the meals. Would they be readily available? Will they have my oatmeal for breakfast? How much sugar is in those mixed drinks? After experiencing dumping syndrome in full force last month, I can say that the fear of it happening again was loud and proud.

When travelling, the arrival and departure days are the most difficult. These are usually long days with limited access my comfort foods. Often you are unable to bring fruit or meat through the security gates. This knocks bananas or wraps. Also, depending on the airport, there are limitations on what you can purchase to eat.

In true trip spirit, I picked up a bunch of Kind bars as well ingredients to create my own trail mix.  Often I find the mixes in the stores are too sweet so instead I mix a variety of unsalted nuts with pepita seeds, sunflower seeds, and craisins.  It was my mom’s recent creation that I copied but I digress.

Our flight was at 7:30am which meant we had to be at the airport for 5:30am. Add in transport time and we are now at 4:30 am. But I can not forget to factor in last minute packing time so I’m now up at a healthy 3:45am. I wasn’t hungry when we got up so I didn’t eat anything. I figured that there would be a Tim Hortons there where I could order a breakfast wrap. Much to my surprise, the Tim Hortons at the airport did not sell breakfast wraps which left only muffins and bagels. Both would have resulted in my first vacation excursion – the porcelain throne. At this point, trail mix for breakfast didn’t look so bad.

Thankfully, we were given an in-flight meal which was a small sausage quiche with potatoes and sausage on the side. I wish I had taken a picture to display how unappetizing it looked but when you haven’t eaten breakfast and you are slowly running on empty, you’ll eat.  I scooped out the egg portion but left the pastry. I didn’t even attempt the potatoes and sausage as it was already a rich breakfast. So I may have eaten 1/2 a cup of egg substitute for breakfast.

After we arrived at the airport we boarded a bus to take us to the port. By the time we cleared customs, got our boarding pass and boarded the vessel it was rounding on 2:30 pm. Needless to say, we were all hungry, stomachless or not!

In true cruise spirit, the first place we located on the ship was the buffet.  It must have consisted of at least 10 different areas.  There was a bar just allocated to different types of bread.  There was even an area where someone would create you your own custom built ice cream sundae!  If I still had my stomach I would have loaded my plate until it was overflowing with food, eat it in 10 minutes and then return for seconds.  Maybe I’d even eat some dessert and then go back for more main course.

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The bread bar

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But there is a double edge sword to this buffet.  I was like a kid in a candy shop with only 25 cents to spend.

Each time I visited the buffet, I would survey the land to see what was available. Then I would narrow it down to my top few dishes.  Often they were the high protein, biggest- bang- for -your -buck kind of dishes.  Rice…no thanks.  Mashed potatoes? Maybe for the weak.  Steak – That’s what I’m talking about!  After finishing my small plate of food, I would often say farewell to the buffet and see you in a couple of hours.

I spent some good time at that buffet. In the mornings, I would get up early and go get early breakfast (oatmeal with walnuts, sunflower seeds and a mashed banana) and then go for late breakfast around 10:30 am (bacon, eggs).  I would also eat early dinner at the buffet around 4-5:30pm and then 2nd dinner around 8:30pm.  One day my friend was looking for me and she decided to check the buffet and of course that’s where she found me. We had a good laugh.

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One of my favourite mid day snacks – build you own nachos

When it came to 2nd dinner time, we often ate in the main dining room which consisted of a three course meal. I would often just order the main meal and share it with my friends. If I wanted an appetizer, I could often finish it but then only eat 1/4 of the main meal. The cool part is that the dining room dinner had many sugar free options that were listed on the menu. This also included dessert!  I definitely took advantage of the sugar free ice cream.

I couldn’t drink many of the beverages offered on the vessel as most of them were mixed with juice loaded with sugar. One day I happened to catch them refilling a juice machine and the first ingredient was high-fructose corn syrup, followed by glucose.  I quickly dumped out the glass of juice I had been holding.  I mostly ordered white wine, beer, or caesars on the ship.  I had sips of my husband’s frozen mudslides and other delicious sugary drinks.  I missed having frozen daiquiris, margaritas, and other delicious frozen beverages.

So maybe I couldn’t eat heaping amounts of food at the buffet. Maybe I had to bypass the ice cream bar.  Maybe I had to avoid the sugary beverages.  Maybe the buffet was a constant reminder of life prior to my total gastrectomy.  However, I have to focus on the positives.  I ate like a Queen those seven days and how much weight did I gain? Much to my own surprise. Zero.

 

The infamous dumping syndrome – a 20 month update

I thought I was dying.

Today I experienced dumping syndrome in full force. What I thought was dumping syndrome prior to this episode was more like watching 5 minutes of a Lord of the Rings marathon- extended edition.

It is something I would not even wish upon my worst enemy.

It all started with the pina colada smoothie. Brandon and I were preparing delicious beverages prior to resuming our game of Power Grid. The smoothie consisted of 1 cup of coconut milk (unsweetened), 1 cup of fresh pineapple, 1 banana and 1tbsp of honey.

All of the ingredients seemed pretty safe as there wasn’t a lot of added sugars. Maybe the fruit would have been of concern but I had eaten pineapple in large amounts and had been fine.

After blending this delicious beverage I ended up with about 500ml of smoothie. I drank about half of it in 10-15min.

You can already see where this is going.

Everything seemed fine and then it happened. Minute 16. Initially I experienced cramping. I figured I had just drank too fast as I often experience cramping after eating. Then came the pain and burning. It felt like acid was melting my insides. In hopes to neutralize the acid, I ate 4 crackers and 5 handfuls of left over movie popcorn.

The good thing was that the acid feeling stopped but the waves of pain continued and worsened. I decided to lie down and then the nausea came. Up I went to the washroom and it was at this point I knew the inevitable was happening.

I had read about this a lot and it was happening now. There was nothing I could do to stop it – the infamous dumping syndrome.

So I’m in the washroom unable to stand up straight, in pain, and feeling very ill. My breathing became rapid and shallow. I started to get really hot. I felt weak and lethargic. The literature wasn’t lying.

Then the big question I had been wondering about for a while was answered. Can you vomit without a stomach?

According to Websters dictionary to vomit is to bring up the contents of the stomach through the mouth.

So the simple answer would be no. No stomach, no vomit.

But now I know what does happen. Heaving. Then if your lucky regurgitation between heaving. But the good part is that no stomach = no stomach acid. Bonus! But it hurts because you heave and there is nothing that releases the pressure. I am grateful that this didn’t happen to me until now because my insides are all healed from surgery but this does happen to many early after surgery.

So after I emptied the top part of my intestines, it would only be fair to empty the bottom. I’ll spare the details but I can say that my colon hasn’t felt this clean since my colonoscopy last year.

After the dump, literally, I could almost immediately feel everything returning to normal. Although it felt like a lifetime, Brandon said I was ill for about 40 minutes.

My insides are still recouping from all the action this afternoon. I mentioned this episode to my stomachless friends and Marne replied, “It’s funny to me how you’ll be smooth sailing for a while and all of a sudden something reminds you that you don’t have a stomach!”

She couldn’t have been more correct.

30 days of Yoga – a 19 month update

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For the past 30 days I have participated in a 30 day yoga challenge and it has been a wonderful experience.  Challenging at times but overall mentally and physically rewarding.

I stumbled upon it one day while looking for a nice stretching routine to follow.  Lo and behold, it was the 1st of December and I decided to take the challenge and perform all 30 days.

I’m a mover and a do’er. I like to go-go-go. Early recovery taught me that you must relax and recover or your body will rebel.  Believe it or not, I was more flexible in my  legs and shoulders in the months after surgery than I had been in years.  I was relaxed and rested.  I had lots of time to think about my life because I couldn’t do much else…haha.  Over the past six months I’ve been feeling better and better and have been ramping up again.  Increased work hours, increased activity, jumping back to pre-surgery life.

In turn, my body has been returning back to the way it was as well.  Increased tone and tightness secondary to every day activities.   This yoga challenge made me stop, slow down, reflect, and stretch for 20-30 minutes a day.

The other benefit to doing the yoga was that is stretched out areas that had been affected due to surgery.  There are many fascial trains that were affected and yoga allowed me to stretch them and release tension and tone.  I also believe it helped me to break scarred tissues that remained from the surgery.

The creator of the 30 day challenge is about to release a 30 day yoga camp in January and I am planning on continuing this practise because….well I can now touch my toes!

Another activity that I have re-started post surgery is indoor rock climbing.  I have been off and on climbing over the past 5 years and felt the itch to return.  I boulder as well as top-rope.  Bouldering is performed on a large rock wall without a harness. There are crash mats below you and you are climbing lower to the ground.  Top rope involves a vertical ascent while wearing a harness.  Another person (belayer) is on the ground and will take up the slack in the rope as you ascend.

Rock climbing has been great because it is a full body work out and really challenges the core.

At this point in my recovery I’m feeling 80-90% there based on the day.  I’m still careful about what I eat and how much I eat but overall things continue to progress.

Thank you to everyone who has been supporting me and following me on this blog over the past two years.  Recently, No Stomach for Cancer has revamped their website and have started a community.   If you are part of the community, please feel free to add me: Cytosine Deleted.

I wish you all a Happy New Year and I look forward to what 2016 will bring.