Did we just become best friends? A 3.6 year update

Since my surgery, I have been scanning my facebook support groups as well as instagram hoping to find locals with CDH1+ who also had a total gastrectomy.  Given that the CDH1 genetic mutation is rare with only 1 in 9 million affected, the chances were slim that I would find someone.  But I kept searching #CDH1, #totalgastrectomy, #nostomachforcancer hoping I’d find somebody.

In March of this year I found a post on Instagram from another person with the CDH1 mutation who also had their surgery with Dr. Swallow at Mt. Sinai in Toronto.   I was pumped.  I sent her a private message that went something like this, “Hi there, I also had my stomach removed by Dr. Swallow at Sinai in 2014 as well as my mom in 2010 due to the CDH1+.  I wish you the best of luck in your recovery!!!!”.

Heather’s Instagram post

A few days later I heard back from her.  Her name was Heather and at that time she was recovering from a post operative complication from her total gastrectomy.  She had her surgery on May 6, 2016 – almost an 2 years after mine.   After sharing some personal stories about how we found out about the CDH1 genetic mutation in our family, we realized that we only lived an hour apart.  A meeting was definitely in order.

Due to Heather’s post op complications as well as my unfortunate IVF and miscarriage misadventures, our meet up was delayed; however, we finally managed to connect in person on October 20th.

What were we going to do?  The fall colours were in full blast at that time and my hometown is known for waterfalls and hiking.   So, we decided to go for a hike and then get food (obviously).  As soon as Heather arrived, we immediately hit it off.   Heather’s story was one of sadness and triumph.  Her mom had lobular breast cancer 8 years ago and survived.  Unfortunately, she developed diffuse gastric cancer and by the time it was detected, it was metastatic and too advanced to do surgery.   During this time, her whole family was tested for the CDH1 mutation and her and her aunt tested positive for the gene.  Heather decided to have her total gastrectomy.  Her immediate recovery was much better than mine. She only spent a few days in the hospital versus my 10 day run.  But later dropped a significant amount of weight and needed to be re-admitted to the hospital.  Sadly, during this time, her mom passed away.

But you wouldn’t know about this sad story unless you talked to Heather about it. She was the most positive, optimistic, and outgoing person.  You also wouldn’t realize she lives without her stomach as she is a mother, farmer, graphic designer and small business owner.  She owns “Feeder Flower Farm” focusing on growing specialty cut flowers as well as running holiday workshops.

We spent the whole time gabbing and sharing stories that we both forgot to take any pictures of us hanging out that day.   We decided that we needed to meet up again.  This time with our husbands and family.

Brandon and I drove up to Heather’s neck of the woods. We were going to go for a hike as well that day.  But plans quickly changed.  We met their dog, Zelda.  Jay, her husband and their wonderful almost three year old son, River.

My Link costume from Halloween 2015

Jay was wearing a Zelda t-shirt.  For those who know me, know I love Zelda.  Zelda was also special to them.  We all gathered around and sat in her living room and drank delicious coffees.  Brandon was the centre of attention as their cat and River all surrounded him.  I noticed that they had a PS4 with a stack of video games and an X-box.   Gamers.  For those who know Brandon and I, know that we also are big into video games.  If that wasn’t enough,  I noticed that they had a shelf filled with board games, BUT not just regular board games, highly strategic ones that cool nerds play.  Board Gamers.  We had more in common than just having the CDH1 genetic mutation and missing a favoured organ.

Our boardgame shelf

We ended up bailing on the hike (since it was cold and gross out) and ended up playing a board game, chatting, and eating delicious food.  It was a wonderful Sunday afternoon.  Just before we left, Heather and I remembered, we must take a picture!  It was the first but definitely not the last.

Myself and Heather – Nov 12, 2017

The thing about CDH1 genetic mutation is that it sucks. It really sucks for so many reasons.  When I was diagnosed, I told myself that I may not understand why it happened to me but the answers would become clear as my life moved on.  This has been all true.  The past four years have brought many positive things into my life, and now I can add Heather and her family to my list.

 

Advertisements

Three Years! – Obviously a 3 year update…

Today marks three years without my stomach.  On May 23rd, 2014, I said farewell to my stomach…never to be seen again.

What can I say about three years without my stomach.  I’ve become happier, wiser, and more balanced.  I put my priorities in things that matter in life – health, family and friends, and fun.  Although this video looks pretty staged, I really like the message within and it sums up how my life changed after I dodged the stomach cancer bullet.

 

In terms of my weight, I have been sitting at 119-120lbs for the past month.  I’m now 5lbs off my pre-surgery weight. My summer shorts from last year, don’t fit anymore.  It’s weird to say that I’m actually happy about that.  Who says that?!?!

My energy level continues to improve.  The body is an amazing machine, if you push it a little bit at a time, it will adapt.  Look at Marne and Steve who are completing feats that even those with a stomach don’t achieve.  Amazing.

As for eating, I continue to push the envelope on what I can and cannot eat. Sometimes, you just want to eat something so you do it. You regret it later but the brain is a funny thing…give it enough time and it forgets the pain and you do it again.

The other day I watched the recorded, “Spotlight on Gastric Cancer” that was held in Seattle this year.  My mom and I went to the first annual one in Philidelphia and hope to attend another one in the future as it is a great opportunity to network with those in the CDH1+ community.

During this presentation a question was asked, “What sorts of things do you wish you would have known about at the time, or what kinds of things have you learned since that you wish you had the knowledge about from the beginning?”  It brought back a lot of early recovery memories and I thought it would be helpful to give my two cents.

>  If at first you don’t succeed, try, try, again.  Food is scary after you’ve had your stomach out.  You know, even 3 years out…some foods are still scary.  During my first year of recovery, I couldn’t tolerate sugar well.  Now, I can eat it in moderation (i.e. a full cookie, a small piece of cake, small portions of freshly baked breads).  I’ve had great success stories and some not so great ones.

>  Make sure you are mentally strong and have a good support network.  One thing about this CDH1+ mutation is that it really plays with your mind.  It’s great to have people to bounce ideas off of.  Having your stomach removed is like 10% of the recovery game, the other 90% is the mental component.

 >  if you don’t have anyone to speak with, you can reach out to the no stomach for cancer community, genetic counsellor, and social media

>  Facebook: CDH1 Mutation GeneSupport group for partial and total gastrectomiesStomachless Living Support Group – Support For Full & Partial Gastrectomies

>  Test your body. Push it a little and see how it responds.  A little bit of pushing will go a long way.

>  Go to a centre where they are well versed about CDH1+ as well as the prophylactic (curative) total gastrectomy.   My genetic counsellor as well as my surgeon are all within the same hospital network.  I continue to be followed annually.

>  Probiotics.  They have been a game changer for me over the past 6 months.  I think I was lacking something and now I’m afraid to stop taking them. I’ve noticed a great gain in energy since I started. On the same note – take your vitamins.   B12 deficiency is real and can have long term health consequences if your levels aren’t maintained. Also monitor your iron, calcium and vitamin D.

 

I’m sure there are a lot more other tips but I don’t want to drag this post on and on.  The past year has been even better than the previous two years. I am excited to see what this next year will bring to the table!

 

 

 

Exercise is medicine – 2 year, 10 month update

I openly admit I’m a yo-yo gym attender. Looking back on old blog posts, I’ve mentioned always starting certain exercise activities and then not mentioning ending them. Well the secret is out, I only usually attend the gym in the fall to winter months. After that I end up falling off the bandwagon because the weather is too nice to work out indoors. I switch to playing women’s fastball in the spring-summer. Currently, I only indoor rock climb and participate in my yoga with Adriene intermittently.

I’ve done this for the past 5+ years and over the past three I’ve noticed a trend. When I exercise, I gain weight.

What?! Wait? When you exercise you gain weight? The pre-gastrectomy old me would have said…”shut up and get out of here”. For the past two gym seasons I’ve managed to put on about 4 to 5 extra pounds. As soon as I stop, I lose it and drop back down to my usual 111 to 112lbs. I’ve also noticed that I have more energy and require less sleep.

Many of the benefits I’m reporting are well researched in the literature but it’s a whole new world when you actually experience it.

I only attend the gym 1-2x a week (step class, zumba class, or aerobics) and go for about a 45 minute walk 1x a week. That combined with my active job is enough for me to maintain all those positive benefits.

Another quick thing I wanted to mention is that I started taking a probiotics (by fluke and a bit of another story) and have noticed my energy level increase significantly. For two weeks, I operated like I did before surgery and it was unbelievable. I didn’t realize it was possible. After that I had a pretty hard crash for a day or two but those two weeks were fantastic. I’m now afraid to stop taking them. I really believe they help with digesting food post gastrectomy which improves nutrient absorption. I tried to perform a literature review to see if anyone had done studies on probiotics post total gastrectomy but didn’t come up with much. If anyone has any scientific evidence about this, I’d love to read about it in the comments below.

So there it is: Exercise IS medicine

image

All ready for the gym

Cereal is back on the menu

image It’s baaccck

I miss cereal.  Let me re-phrase that, I missed cereal.  I have attempted to eat cereal a few times each year in hopes that one day it won’t go right through me.   I am excited to report that that two weeks ago was that day.

For me, cereal was a breakfast staple for many years. Not only was it quick and easy, there were so many varieties to choose from.  I could wake up, eat a bowl of cereal and be out the door in no time.  I missed cereal.

Often I would walk through the grocery store, pick up my old favourite cereals, read the ingredient lists and then return the box back to the shelf for I had vivid flashbacks to my dumping syndrome day.  Many varieties of cereal have a high sugar content with glucose or fructose being in the first few ingredients. In addition, I try to avoid too much unbleached wheat flour as it makes me feel ill.

Two weeks ago a box of Multigrain Cheerios ended up in the shopping cart.  Not only were they one of my favourites but they were also on sale.  The sugar content was 6g per 1 cup.  Cheerios are also high in iron.  It was time to try eating cereal again.

I started with half a bowl of dry cereal in the evening.  It’s better to eat sweetened foods later in the night because my mom and I both believe that a “buffer” is created with food eaten earlier in the day.  Less chance of dumping.  After finishing the bowl, I waited for the inevitable to occur….but lo and behold. I was fine.   No gut pain. No gurgling. No fatigue or nausea. No dumping!

Feeling excited, I ate a small bowl of cereal the next evening with milk.  Again, I was fine.  High fives occurred all around in our house.  Also a little dancing. Okay, a lot of dancing.

The next test was to eat it first thing in the morning. No buffer. Fear, yes.  This morning, I poured myself half a bowl of cereal with milk.  I told myself to eat it slow but I definitely ate it in 10 minutes.   About 10 minutes after I finished, I started to feel my heart rate rise.   But about 10 minutes after that, I was fine!  No fatigue, no diarrhea, no nausea.  I’ll take it as a small victory.

A big turning point came about 2-3 months ago.  I decided I was tired of avoiding foods I wasn’t sure about and that I would just go for it (within reason).  Up until then, I was apprehensive to try new foods or foods that had caused problems in the past.  It’s frightening because you don’t know it’s bad until it’s too late.  Much like drinking too much alcohol.  Everyone is having a great time until it really hits you. By that time, it’s too late to turn back and you must deal with the consequences.  It was time to face my fears.

Since then I have discovered that I can tolerate more than what I had previously thought.  It’s exciting that as the months pass, I find myself adding more and more foods to the can have list and not the can’t have list.  A great start to 2017!

tom-quigley1-asset-4fbf959cefaad

 

 

 

 

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. 

image

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!
image

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

Screen-Shot-2015-02-03-at-14.34.01

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.

 

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.

04f7839523f9473438b43bbc1a3700ff4145a7ea537dd84a50b7de4e6a162dce

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!

 

 

 

 

 

November is Stomach Cancer Awareness month

nsfc_scam_banner_web

November is Stomach Cancer Awareness Month and it’s something that hits close to home for obvious reasons.  Prior to learning about CDH1 and Hereditary Diffuse Gastric Cancer (HDGC), I knew very little about stomach cancer and definitely had no idea that there were people out there living without their stomachs and have been for a while.  The goal of this blog is to share some facts about stomach cancer and if you’ve learned something, then I’ve done my job.

In Canada, the five year survival rate for stomach cancer is 25% (1). Stomach cancer is difficult to detect in it’s early stages as it rarely causes symptoms. According to the American Cancer Society,  the signs and symptoms of stomach cancer can include (2):

  • Poor appetite
  • Weight loss (without trying)
  • Abdominal (belly) pain
  • Vague discomfort in the abdomen, usually above the navel
  • A sense of fullness in the upper abdomen after eating a small meal
  • Heartburn or indigestion
  • Nausea
  • Vomiting, with or without blood
  • Swelling or fluid build-up in the abdomen
  • Low red blood cell count (anemia)

When you read this list, you can see that some of the symptoms are common among the general population.  How many people experience heartburn or indigestion out there?  I know I experienced heart burn since high school that worsened and was especially bad the five years prior to having my total gastrectomy.  I used to walk around with a constant supply of tums or other antacids.  Was this the beginning of stomach cancer? Who knows.  Often these symptoms can be attributed factors other than stomach cancer (i.e. stomach virus, ulcer, stress, etc).

HDGC attributes to less than 5% of stomach cancer (3).  CDH1 is a tumor suppressant gene.  Each person is born with two copies of the CDH1 gene which codes a protein called E-cadherin.  This protein is responsible for cell signalling and cell to cell adhesions.  When people are born with the CDH1 mutation, half of the team is already knocked out which puts all the responsibility on the remaining gene.  Researchers aren’t sure what knocks out the other one, but when it is gone – we’re in trouble.    This is why people with a CDH1 mutation or Hereditary Diffuse Gastric Cancer Syndrome are at a much higher risk for developing diffuse gastric cancer earlier in life.  The average age is 38 (3) but people have passed away as early as teenagers.

I’ve linked this before but to those new joiners to my blog (Welcome!) here is the link again. I think Dr. Perry Guilford does a really great job of breaking down such a complex topic in a way that we can all understand.  It’s from the No Stomach for Cancer’s Spotlight on Gastric Cancer event I attended back in April.  Skip to 27:54 to learn about CDH1.

Dr. Perry Guilford – 2015 Spotlight on Gastric Cancer

Genetic testing for the CDH1 mutation is available for families who fit the eligibility criteria.  In Ontario the criteria is as follows (3):

  1. At least two relatives with diffuse-type gastric cancer
  2. At least one diagnosed under age 50 or families with at least three relatives with diffuse-type gastric cancer at any age
  3. Families with one 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.

Genetic testing is a BIG decision and definitely not something to be done impulsively.  For those who think they fit the criteria, please speak with a genetic counselor.

Thanks all for sticking with me on this blog post to the very end.  I hope you all learned something and feel free to share!

References

  1. Canadian Cancer Statistics 2015 (2015, June). Retrieved from http://www.cancer.ca/~/media/cancer.ca/CW/cancer%20information/cancer%20101/Canadian%20cancer%20statistics/Canadian-Cancer-Statistics-2015-EN.pdf
  2.  American Cancer Society  (2015, March 16).  Signs and Symptoms of Stomach Cancer.  Retrieved from http://www.cancer.org/cancer/stomachcancer/detailedguide/stomach-cancer-signs-symptoms
  3. Mount Sinai Hospital Zane Cohen Centre. (n.d.) Hereditary Diffuse Gastric Cancer Syndrome – HDGC.  Retrieved from http://www.zanecohencentre.com/gi-cancers/diseases/hdgc