Pregnancy post total gastrectomy

I have been a little MIA from the blogging world over the past few months. Not because I didn’t have any ideas but I was saving up for some big news!

After last years adventures with IVF + PGD +PGS followed by a natural pregnancy and a miscarriage, we are happy to announce that we are expecting. I write this with both excitement and hesitation. As you all know, I am an optimistic person and prefer to see the light in situations. However, after experiencing a miscarriage, it is hard not to be semi-guarded when expecting. We announced to our friends and family after the infamous end of first trimester, but I did not feel comfortable posting anything onto social media. After speaking with Brandon and thinking about it long and hard, I decided that I wanted to blog about being pregnant without a stomach as it may help many other women trying to make that tough decision about when to have their stomach removed. I know I was there back in 2014 and it was not an easy one.

I was one week out from meeting with a fertility clinic as it had been almost 1 year since our miscarriage last year. I decided to take a pregnancy test about a week before the appointment and much to my surprise, it was positive. I was four weeks pregnant. This was back in mid August.

I had suspicion that something was going on as I was able to eat some ice cream, which I shared with the world on my last blog post. This happened to me last year before the miscarriage. I was able to tolerate sweeter foods easier. That was my first sign.

I called the fertility clinic to let them know about our natural pregnancy and they still followed me for the first eight weeks. At this point, I was transferred to a high risk maternal fetal medicine clinic. During my appointments at the fertility clinic, ultrasounds were taken at the six week and eight week mark. Each one filled with nerves that we would receive bad news and then joy that things were going well.

Once I was transferred to the high risk clinic, I first met with the regular maternal fetal medicine clinic and a genetic counselor to discuss the hereditary nature of the CDH1 genetic mutation as well as how one can go about testing a fetus for the gene. We had already decided in advance that if we had a natural pregnancy the child would not be tested until it is old enough to make the decision on their own. But for those who are interested, doctors are able to test for the gene using Chorionic villi sampling or amniocentesis. At this point, the expecting parents can decide to terminate the pregnancy or keep it. It is not an easy decision for anyone, that is for sure. In Ontario, these tests are covered which adds more layers to the decision making process of IVF with PGS/PGD (costly) vs. natural (testing is covered).

Thankfully, we were already prepared for all of these decisions as my genetic counselor discussed all this with me back in the day when I found out I was positive for the mutation.

I had morning sickness from weeks six to week fifteen. It actually was afternoon/evening sickness which allowed me to get through my work day but knocked me out at night. I experienced brutal nausea from about 4pm to when I crashed at night around 8pm. I attempted vomiting hoping it would make it stop but that is one thing that I have not been able to do since my stomach removed. So it was basically like being stuck with constant motion sickness for a nine weeks. Props to all the women who have this throughout the entire pregnancy and for those who don’t, you are lucky!

Around week six, I started to develop coccyx (tailbone) pain which has progressed into right sided glute/hip pain which radiates a quarterway down the back of my leg. Thankfully, I have many great physios friends who with who have been keeping it manageable. It is a real pain in the butt!!

In week 16, I was able to feel the baby kick and in week 17, I was able to see some kicks and feel them on the outside. They say that people may not feel these things until 20 weeks or later in pregnancy but I think us stomachless people are so body aware, we pick it up faster. The baby kicks more after I eat, I am assuming because all the intestinal noises from digestion must be pretty loud in there for it. The baby is sitting on my left side and fairly low.

In terms of weight gain, I have gained about four pounds since becoming pregnant. The Ob-gyn recommended that I gain 5-8lbs by week 20. I also recently completed my anatomy scan which occurs around weeks 18-22. Again, I had some ‘scananxiety’ but thankfully, everything was normal. I have still not gained much weight and I have a small bump. My Ob-gyn was not concerned about the lack of weight gain as it is too early to tell if the baby is growing appropriately.

Anyways, I plan to keep people up to date about how things are moving along. Pregnancy post gastrectomy is not a topic that many blog about so I think this will serve as a good platform to blog more frequently again.

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Hereditary Diffuse Gastric Cancer Webpage

Hey all!

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

The mission statement:

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

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

Check it out:

Hereditary Diffuse Gastric Cancer

Ice cream

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

But I’m back for another reflection post.

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

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

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

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

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

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

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

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

Happy August everyone!

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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.

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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).

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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.

Infant loss

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.