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).



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!

  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.

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!




IVF and CDH1

*** NOTE: this is a sensitive topic to discuss publicly; however, I have seen some questions revolving around IVF and CDH1 so I decided to move it from a private post to a public post. IVF is a VERY personal choice, I do not intend to offend anyone with this post. It is purely educational for those curious about pursuing it ***

If you have needle phobia, this will cure it for sure.  Between blood work and self administering the medication to grow and retrieve the eggs – there are a lot of needles.  But it’s no biggie. Nothing compared to the process of getting your stomach removed.

Brandon and I had many, many, many conversations with each other and health care professional, family, and friends prior to deciding try IVF to prevent passing the gene down to for our future children.  It is a big personal choice and I hope not to offend anyone by choosing this route.   It was a difficult decision to discuss this openly online as well but in true Rachel fashion, I love to educate and help others, so ultimately I decided to blog about it for all those wondering about IVF.

In June of 2016 we met up with a fertility clinic in Toronto which we were referred to by our genetic counsellor.   This would be the 2nd time coming to this clinic as the first time was before having my gastrectomy.  At that time, the discussion was about preserving eggs in the event cancer was found during the surgery and I was required to go through chemo and radiation.

In June, we found out that we would be covered for a funded cycle for IVF  but would be placed on a waiting list.  Our date was October 2017.  Late Dec 2016 we were contacted by the clinic with an opportunity to bump it up.  We took it.

We met back up with the clinic in Jan 2017 to get the ball rolling with creating the genetic probe to screen for CDH1 in our embryos.   This is not available in Canada from what I know so the fertility clinic I attend partnered with a lab in Michigan to create the probe. This lab is called Genesis. Unfortunately, this genetic test creation and test is not covered in the funded cycle but we were prepared.

Genesis sent us a kit to collect DNA samples from my mom, dad as well as Brandon and myself.  The goal was to create a genetic marker that contained the code for the mutated CDH1 gene as well as be sure the baby receives got my dad’s copy. The whole thing is pretty complex so I’ll spare you all the details but you can Google, “pre-genetic diagnosis and screening” and learn about the process.

It took about a month or so to have the probe created. It was completed the 2nd week of February.   At this point I was good to go to start the IVF process.

I had to wait until the 1st day of my period prior to starting my cycle.  We were eager to start in Feb but my period never came. Figures…when you want it, it doesn’t come and  vice versa.

I learned through this process that I have polycystic ovarian syndrome which means my body doesn’t release an egg monthly. This would explain my irregular periods throughout my lifetime.

In March aunt flow decided to show up and we were off to the races.

I had to complete an ovarian reserve test which is an internal ultrasound to count the number of follicles in my ovaries.  The doctor started counting and said there was too many to count but ultimately she said over 30.  The average amount for someone my age was around 15.  I was in good shape.

What that meant though was that I was at risk for having ovarian hyperstimulation from the drugs.

I also had to complete a hysteroscopy. This is a quick 10 to 15 minute procedure where your fallopian tunes and uterus is flushed with water to make sure everything is clear.  Thankfully, I was clear.  The procedure wasn’t too painful. Just a sharp cramping sensation for a minute or less was the worst part.  I was clear and good to go!

On March 28th, Brandon and I signed a series of consent forms and then learned how to do all the medication injections. These are all done subcutaneously (abdomen, or upper thigh). On April the 2nd, the real fun began, I started egg stimulation. Every night I administered two needles – Gonal F and Luveris.  Brandon helped me with the Luveris as it involved mixing and I was not good at it.  These injections occurred from the 2nd until the 8th.  On the evening of the 8th, a third needle Orgalutron was added.  This needle prevented the eggs from being released prematurely.


Meds for a few days

Generally I handled the hyperstimulation well. Near April 9th, I started to feel more fullness in my ovaries. More on the left than the right.  It also felt a little worse after eating.  Around April 13th, I started to get a little short of breath when walking up hills.

During this stimulation period, I was monitored closely.  This meant frequent trips to Toronto. The monitoring was pretty quick and painless. Blood work and ultrasound followed by a meeting with the  nurse who educated us on how to proceed with the medication.  Thankfully, Brandon was able to drive me to most of them so we would grab some eats before heading back home.  The round trip was about 4 hours.  Most of the time I was on my way home before my regular wake up time!  I had to go back on the 6th, 8th, and 11th.  After each appointment, I continued to work. Needless to say, it was a long and tiring work week.


Injection time

Egg retrieval was on the 14th of April. Good Friday. This is also the day conception happened for potentially all my future children.  On the evening of the 12th, I took  only ONE shot called suprefact which triggers the follicles to be released.  I was back to Toronto the next morning for blood work to ensure the shot was successful.  The blood work needle was the only one that day.  The evening of the 13th was needle free. Hooray!


Egg retrieval day

Egg retrieval was painful but necessary. A little pain for a long term gain.  By the end of Thursday I felt a lot of pressure and fullness in my abdomen from my ovaries. I also couldn’t walk fast without getting short of breath.  It was time to get these follicles out!

I was sedated mildly with a drug to make you sleepy as well as a pain killer. That being said, a needled is passed through the vagina into the ovaries to extract the eggs.  It wasn’t very fun and something I don’t really want to repeat.  Brandon got to come in as well to watch.  After all, this is how our kids are being created.

After the procedure was completed, I went back to a recovery room and slept a little. I had to wait there until I could urinate.  Then it was home time.  Once I got home, the pain from the procedure became more intense and I required some Tylenol.   I also slept off and on the rest of the evening.

The day after the egg retrieval, I was extremely bloated and had a lot of cramping.  It was hard to do transitional movements and difficult to take deep breaths.  It reminded me of what it felt like when my incision was healing post surgery.  To a much lesser degree though but still uncomfortable.  I spent the majority of the day relaxing and eating salty foods.  I think I was developing mild ovarian hyperstimulation syndrome.  It is recommended by doctors to eat salty foods to try get the fluid to leave your abdomen and go back into your bloodstream.  Needless to say, I spent the whole day eating as much salt as I could (salted peanuts, rice crackers, campbells soup).  I also took Tylenol throughout the day the assist with the pain.  I weighed 121.4lbs.  This is the most I’ve ever weighed post gastrectomy; however, it was all fluid weight.  By Wednesday, I had lost much of the weight and was down to 118.5lbs.  I also lost 4cm of abdominal girth due to all the retained fluid in my abdomen.


No, I’m not pregnant. The bloat was real

The day after egg retrieval I started a medication called prometrium.  This is taken 2x a day for 14 days.  It is a progesterone capsule that helped to get my period and cycle back on track.

In terms of the egg retrieval, I felt ill prepared and did not realize that it would take such a toll on my body.  I am glad that it occurred on a Friday so I didn’t need to miss any work. My advice to people doing this in the future, is to take a couple days off work after the retrieval if you are at risk for OHSS.  The after effects were not very fun.

Then the wait game began.  It takes five days to see which eggs survive to the Blastocysts stage which is the stage required to be biopsied and tested for the gene.  During the testing phase, the blastocysts are frozen while the samples are sent to Genesis to be screened. This may take up to four weeks.

On April the 15th (Day 2), I received a call from the embryologist that of 18 eggs retrieved, 17 were mature enough to be fertilized and 15 were successfully fertilized.  Yay!  The  more the better because there will be a bigger pool to test as 50% of them will be positive for CDH1.

After I received this phone call, I started thinking about those 15 fertilized eggs and that they could potentially be babies. That was a sad thought that I would be eventually discarding the ones that make it to day 5 but test positive for the gene.  I wouldn’t be here if this was the choice given to my parents.

On April the 20th (Day 6), I received a call that only 6 fertilized eggs developed enough to be biopsied.   These biopsies were sent to Genesis. We had to wait 2-3 weeks for the test results.  At this point, both of us were crossing our fingers and toes that we would get at least a few that were negative so we wouldn’t have to make decision if I was to repeat the cycle.

On May 2nd, 2017, I received a voicemail from the genetic counsellor that my test results were in and to call her back. I immediately called her only to find out that of the 6 that were tested….5 had the gene mutation and the one that didn’t, was chromosomally abnormal and would have resulted in a miscarriage if implanted.   I was shocked because the odds were 50/50 based on stats for inheriting the mutation but we were 83% positive for the mutation.  Hearing the news was difficult but the logical side of me started to think about what were the next steps.  Going through it once was physically, emotionally and financially stressful.  I also had to repeat this information to Brandon. That was equally difficult. No one prepares you for this.

We were pretty hopeful that we would have had at least a couple of embroys to transfer; however, we were left with nothing.  This is why you test right?

As mentioned earlier, it was difficult to decide whether or not to pursue IVF for our future children.  Now we are faced with the decision…do we try again?  That’s a whole blog discussion on it’s own and I’ll spare you the details (On a side note, for those who are interested in discussing it, please send me an email).  I’m a big believer that the universe works in mysterious ways and although the reason may not be clear now, it will become clear in time.  There are pros and cons to both and there is no RIGHT answer.  There’s not even the most right answer.

I will leave a few for anyone trying to decide what to do:

  1. Be patient and don’t expect anything.  Just go with the flow.
  2. Be prepared to take time off work for appointments as well as any side effects from the medications/egg retrieval.  Although the whole monitoring process is only around twoish weeks, you are making visits to the clinic almost every other day.
  3. Investigate your insurance coverage options.  We were fortunate to have one cycle funded; however, our insurance did not cover any of the medications, genetic testing, or probe creation.

Yet another experience to add to the CDH1+ adventure log.





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


All ready for the gym

Cereal is back on the menu

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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!