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

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Stomach Cancer Awareness Day

Hey all!

Today is Stomach Cancer Awareness Day and I will be attending the 2nd Annual Stomach Cancer Conference in Toronto. There will also be a live cast for anyone unable to attend but interested in the information presented.

If you are going to be there today. Come say hi!

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!

Four years wiser – 4th Gastrectoanniversary

Today I celebrate four years without a stomach and my annual gastrectoanniversary blog.

I’ve been MIA from the blogging scene over the past few months. Where have I been? I’ve been busy living. Honestly, my life is becoming so much more normal that I find it difficult to find unique gastrectomy topics to blog about these days.

This past year I have been working on overcoming two ongoing issues since surgery – Fatigue and Sugar.

On Sugar

About a year or so ago, I decided to man up and try sugary foods and various breads that I previously not digested well and surprisingly I could tolerate a lot more than what I had originally thought. I grew tired of being afraid of feeling unwell and that I didn’t want to live out the rest of my life missing out on things I may be able to tolerate but was too afraid to try. So in the safety of my own home, I started experimenting with various foods/beverages. Thankfully, I was able to tolerate a lot more than what I could tolerate a few years ago.

So after four years, I can eat a small slice of whole grain toast with peanut butter for breakfast. I don’t pass on cake or pie. And I can eat a whole donut over 45 mins and not feel terrible. The key to my success is pacing and portion control. At this point, I will try anything and just pace through it and 85% of the time I’m fine. The other 15% I’ve passed out on the couch.

Donut time!

On Fatigue

I work a healthy 30 hours a week and have not bumped it up for the past three years. To those who may not know, I work as a physiotherapist in an orthopaedic clinic performing manual therapy on patients throughout my day. I’d classify it as a physical job. Twice a week I start work at 11am and I have been careful not to do anything too strenuous before work for fear I would burn out by the end of my work day.

Well, earlier this year, I decided that I wanted to do more with my mornings and started pushing back my rise time and doing more with my mornings. I knew there would be an adjustment period where I would feel tired but my body would adapt and I’d even out. My good friend, coffee, would also be present to help me through. Currently, I am able to wake before 8 am with enough time to get some jobs accomplished before work. I’m working on pushing it back to 7:30 am to have a more consistent wake time throughout the week. It goes to show that if your mind is ready, your body will eventually figure it out. I require power naps every now and then but overall, my energy level has increased and I’ve gotten a lot more accomplished.

Other updates

As for my weight update, my weight remains fairly stable at 117-118lbs. Although I am only off of my pre-surgical weight by 7lbs, my body shape has changed. I’m leaner and carry my weight in different places. Reading through last year’s post, I’ve managed to maintain this weight throughout the year. I am beginning to think I’ve levelled out. The only issues is that my mind still thinks I am my old size and I constantly pull clothing sizes that are too large even four years later!

I want to make a quick mention about the importance of iron supplementation and monitoring levels post total gastrectomy. My iron level has been slowly dropping over the past few years and for the first time this year, my iron was at a low enough level to affect me physically. It felt like I hadn’t slept for days. I just kept pushing through figuring it would pass but it did not and after a week and a half I caved and went to see my family doctor. She ran some blood work and I now know I need to take my iron supplement daily. Once I started taking it daily, my energy levels improved almost immediately. Previously, I was taking it every few days thinking that was good enough. Apparently not!

From an unsuccessful IVF cycle, to a miscarriage, to facing your fears, this past year has been filled with many learning experiences that have helped me become more resilient and wiser. Year four has gotten me even closer to my pre-gastrectomy self and I believe this time next year I’ll be that much better.

Olympic fever

I love the Olympics – especially the Winter Olympics.  Many of the sports carry considerable amount of physical risk, whether it be the laser sharp blades of the speed skaters, the speed zipping  down a steep hill, flying stories above the ground, and of course sending yourself head first down an ice track on a small sled.

I also love the stories of all the athletes as they have spent many years training for this moment when the world watches and cheers.

Obviously, I follow and cheer a lot more for our Canadian athletes and last night I witnessed a truly inspirational story.

Last March Mark McMorris was seriously injured while snowboarding backcountry.  He hit a tree and fractured his jaw, left arm, pelvis, multiple ribs, ruptured his spleen, and collapsed his left lung.  It was shocking to the nation and many of us followed his story as he fought to recover.

Fast forward to Pyeong Chang 2018.  Just under one year later. Men’s slopestyle.  Guess who’s back? Mark McMorris.  He laid down three amazing runs to land him a second Olympic Bronze.   Oh and did I mention he broke his femur in 2016 and has a rod in there?  

From Olympic Instragram post – Feb 11, 2018

And then there’s Denny Morrison.  He recovered from a bad motorcycle accident in 2015, suffered a stroke in 2016 and is back competing in long track speed skating.  

These stories are so inspirational as it demonstrates many things.  Perseverance.  Determination. Attitude.

If they can overcome challenging life experiences, so can we. 

But first….coffee

I have never enjoyed coffee as much as I have over the past three and a half years and counting.   Maybe it’s because it’s easier to drink than water. Maybe it’s because it wakes me up. Maybe it’s because it helps me poop.   You may be thinking TMI but you know it’s true.

I mean, other people love coffee too, but there’s just something about drinking coffee without a stomach.   The caffeine goes to your brain fast, real fast.    Curious to know if it was just me or if it was a stomach-less thing, I decided to do a mini-poll among my stomach-less friends and we all decided that coffee is just great.  By the way, I don’t have a huge sample size to back this up (four people to be exact) but I’ve also seen on the support groups that I follow that those who can tolerate this wonderful beverage also love coffee.

Breville Barista Touch with a shout out to “My Gut Feeling”

In November of last year, Brandon and I decided to treat ourselves to a semi-automatic espresso machine as an early Christmas gift to each other.  Since then, I have developed a greater respect for baristas and better understand why my Starbucks coffee may cost $6.  Thanks to YouTube, I have been able to become my own barista – spending countless hours learning about tamping, grind size, brew time, frothing, and or course latte art.

Besides the benefits I listed earlier, consuming coffee has other health benefits.  A recent study published by the British Medical Journal concluded that consumption reduced mortality from cardiovascular disease, coronary heart disease and stroke (1).  It also reduced the risk of developing specific cancers such as prostate, endometrial, melanoma, non-melanoma skin cancer and liver cancer (1).   Consuming coffee also reduced the risk of developing type II diabetes, gallstones, gout, and renal stones (1).  Heck, it even reduces your risk for developing liver conditions such as cirrhosis by half! (2).  When it comes to your brain, it may reduce the risk of developing Parkinson’s disease, depression and Alzheimer’s disease (1).  Women post total gastrectomy should be aware that it may increase the risk of fractures due to calcium absorption; however, if you add calcium (milk or cream), you may help reduce the effects (1).

Cheers!

Besides the physical health benefits, there are other psychological benefits associated with coffee. It’s associated with many good times.  I’ve had many great conversations over coffee with friends and family.  I will also rarely blog without a coffee beside me.  Oh and it played a large role in getting through six years of university.

So for those who have made it through their total gastrectomy, can tolerate coffee, and love it as much as I do – go reward yourself with a sweet coffee machine. You deserve it!

References:

1. Poole R, Kennedy OJ, Roderick P, Fallowfield JA, Hayes PC, Parkes J. Coffee consumption and health: umbrella review of meta-analyses of multiple health outcomes. BMJ [Internet]. 2017 [cited 2017 Nov 22];359j5024. In: Ovid MEDLINE(R)[Internet]. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=medl&NEWS=N&AN=29167102

2. Kennedy OJ, Roderick P, Buchanan R, Fallowfield JA, Hayes PC, Parkes J. Systematic review with meta-analysis: coffee consumption and the risk of cirrhosis.   Aliment Pharmacol Ther [Internet]. 2016 [cited 2016 Mar];43(5):562-74. In: Ovid MEDLINE(R) [Internet]. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=med8&NEWS=N&AN=26806124

 

 

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, 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.

Stomach Cancer Awareness Day – Nov 30th

Today I had the opportunity to attend the first annual and first in Canada to focus on Stomach Cancer conference.  It was organized by “My Gut Feeling” which the first not for profit organization in Canada dedicated solely to stomach cancer.   Similar to “No Stomach for Cancer“, it was founded by two stomach cancer survivors who realized that there wasn’t much information out there on stomach cancer nor a place to network or with patients, survivors, or caregivers.   It was founded in 2016; however, I stumbled upon their web page earlier this year.

I am part of many groups on facebook that provide support to those who have had partial or total gastrectomies or the CDH1 gene mutation.  Many people ask questions and they are from all over the world.   The great thing about My Gut Feeling is that they can help Canadians navigate the health care system and offer support as well as spreading awareness and advocating for Gastric Cancer in Canada.

I learned many things today and heard many personal stories. The thing about attending these conferences is that they always pull on your heart strings.  You hear personal stories from survivors, caregivers, or patients and it reminds you of where you’ve been and how far you’ve come.  You hear talks from medical professionals who push to advocate for stomach cancer research where there is very little funding.  You meet others who have been through similar situations and you realize that you aren’t alone.  Oh, and you usually get a lot of breaks with food because you know a chunk of people in there don’t have a stomach.

There are many more wonderful things that I could share about this conference as it was so fantastic; however, I wanted make a quick blog post before bed and it is about an event I learned about which is occurring this Thursday in Canada.

My Gut Feeling has organized a Stomach Cancer Awareness Day on November 30th.  In honour of this day the CN Tower in Toronto will be lit up periwinkle blue.  So will the city hall towers and the Toronto sign.  Not only that, the city halls and landmarks in Victoria, Vancouver, Edmonton, Montreal, and Halifax will light up as well.

If you are near any of these landmarks, I ask that you snap a photo of yourself near it with #MGF365 to help raise awareness about stomach cancer.

 

 

 

October – two things to recognize…okay maybe three

Hey -yo!

I’m still here, alive and well.  I’m currently sitting in my favourite local Starbucks shop with my fall favourite…Pumpkin Spice Latte of course.   Recently, I decided I no longer wanted to pay an extra 70 cents for a lactose free milk and just got it with regular milk.  I wouldn’t recommend drinking a full glass of milk; however, I have found that the tall cup size latte gives me minimal discomfort.  Also, I ask them to add only 1 pump of the syrup to decrease the sugar content and no whipped cream.  What would fall be like without pumpkin everything, right?

Anyhow, I’ve been meaning to write a post for a while now but have been struggling a little bit with the content.  October has given me a new opportunity to write about three things close to my heart.

One of the main reasons I have not posted throughout the summer was that it was a little bit of a summer of highs and lows.   October 15th is Pregnancy and Infant Loss Remembrance Day and I wanted to discuss something that I recently experienced that society doesn’t like to discuss.  I think we should.  I’m breaking my silence.

Following our IVF disappointment, we decided that we were okay with trying to conceive naturally.   I don’t know if technology will be advanced enough cure stomach cancer; however, I do have hope that the medical world will have better ways of detecting the cancer, screening for it, and managing it.  After all, in the CDH1 gene mutation was discovered approximately 20 years ago and look where we are now.  I’m here.

Shockingly, I became pregnant immediately.  On June 14th, I had a positive pregnancy test – I was 6 weeks pregnant.  We were excited.  Who would have thought it would have happened so fast?  My cycle has been fairly irregular since surgery so we thought it would take a long time.  As the weeks went by, we starting thinking about our new future with a little one.  On the Canada Day long weekend, we gave our immediate families Happy Canada Day cards with the announcement inside – it was week 8.  I didn’t have my first ultrasound until week 12 and we knew we weren’t supposed to tell anyone until after this time but we couldn’t keep the secret much longer.   After all, if anything was to go wrong, we would want the support from our families.

On July 25th, we made our way to the hospital for my first ultrasound.   Both of us were nervous, it would be the first time seeing our future child.  The hospital was busy and we waited 2 hours past our appointment for me to be called in.  Finally it was my turn.  The ultrasound tech told me to lie down and then started taking images of my abdomen.   About five minutes in, she stopped and went out into the waiting room to get my husband.   He joined me and the tech left again.  Minutes later, she returned with another man.  I knew something wasn’t good.   Both of them reviewed the images.  He paused – looked at us and started introducing himself as the Ob-Gyn at the hospital.  “I’m sorry but you are miscarrying”.   I don’t think I’ll ever forget that day just like I’ll never forget the day of, “I’m sorry but you tested positive for the mutation”.  He went on to explain that the fetus stopped growing at 8 weeks and asked me if I had any cramping or spotting.   I did not.  I had what was called a “Missed Miscarriage”.  It means the fetus had stopped growing but your body still thinks your pregnant so nothing happens.

Both of us were devastated.  I described it as a deep, deep sadness.   Did I do something wrong? Why did this happen to us? Did the residual IVF hormones release an egg that wasn’t ready?  We’ll never know.  But I doesn’t end there, my body thought I was still pregnant and I went for another week and a half before I was given medication to pass the tissue.  It took another month for my hormone levels to drop back to normal (the time when a pregnancy test shows negative)  and a total of 9 weeks after the miscarriage for my period to return.  In May I was pregnant, by August I was not.

I have learned that I heal from speaking to others about my experiences.   In discussions with friends,  I learned that many of my other friends and colleagues have also had miscarriages.  One in four pregnancies result in miscarriage.   It was more common than I had originally thought.   Some say , “Oh, if left to go to term, it would have had serious health issues”.  Although this is likely true as miscarriages that occur prior to 12 weeks are due to chromosomal abnormalities, the flip side is that it could have also been perfectly healthy and gone to term.  You morn the loss of what could have been.

Time heals and we both are doing well.  I am optimistic about the future.  But now October 15th has a greater meaning to me.

The second thing I wanted to quickly recognize is Breast Cancer Awareness Month.  Since the stomach cancer is a non-issue for me anymore, the only other cancer I know I am at high risk for is Lobular Breast Cancer (40-60% lifetime risk).  The older I get, the more I start to think about it and having my Ontario Brest Cancer Screening letter come to me every October is always a reminder that I’m not in the clear.  Which brings me to the marketing for getting genetically tested.  People may not realize but there is a large psychological component associated with genetic testing and testing positive for something.   I would HIGHLY recommend speaking with a genetic counsellor prior to deciding to be genetically tested.  They can identify all the benefits and RISKS to being genetically tested.  They can also be there to support you depending on the outcome.   It may be a simple blood test but there are many other implications.   The most stressful time for me was between finding out I was positive and deciding what to do next.   I am so thankful for my genetic counsellor.
Number three – In just over a week I will be celebrating my 33rd birthday.  It’s three years more than my would be grandfather who passed away at 30 due to stomach cancer.    Even though I may be getting older, I’m thankful to be getting older because I honestly think I wouldn’t have made it much longer if I didn’t have the chance to prevent this cancer.

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 Gene, Support group for partial and total gastrectomies, Stomachless 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!