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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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.

Three Years! – Obviously a 3 year update…

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

 

 

Exercise is medicine – 2 year, 10 month update

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

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

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

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

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

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

So there it is: Exercise IS medicine

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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!

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The things I miss – 2 year, 2.5 month update

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

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

– Ice cream – 

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

– All you can eat Sushi restaurants –

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

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

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

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

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

– Hamburgers and hotdogs with the bun –

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

– Sandwiches – 

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

– Starbucks –

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

– Being able to function on an empty stomach – 

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

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

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

Two years! – a 24 Month update

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

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

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

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

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

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

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

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

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

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

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

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

Thank you all for following me over the past two plus years. Life is all about celebrating the small things. Keep smiling!
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