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.

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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.

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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!

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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.

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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

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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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Sugar!

December 6, 2013.  Three years ago I was hit with the news that I was CDH1+.  I’ll never forget sitting around that round table being told I tested positive for the CDH1 gene mutation. 

Many things have changed over the past three years.  But, I can say that they have changed for the better. 

Physically, I’m not as strong as I used to be and I don’t have as much endurance to go go go.  Mentally, I’ve learned more about myself over the past three years.  Being faced with a challenge only pushes you to grow.  The answer to the challenge may not be clear at the time but as the days progress a method to the madness becomes apparent.  The message for me was balance.   But that’s a whole other separate post in itself.  Let’s get on to why I called this post Sugar!

Sugary foods and drink scare me but you can only be scared for so long.  Being the holiday season, I decided to take a risk and start eating some of the delicous goodies that are coming into the clinic.  I’m excited to report that so far so good.  I’ve eaten my fair share of shortbread, gingerbread, and chocolates.   I’ve also ordered half sweet lattes of the Starbucks menu and been fine.    My tolerance keeps improving as time moves forward.  This has been both an exciting and expensive discovery. 

If I eat too much sugar it puts me to sleep.  If I eat sugar too late at night, I wake up 4-5 hours later wide awake.     So on nights where I need to get up early the next morning and be productive…eat a cookie or two before bed.  Also, don’t eat too much sugar around co-workers or patients.  Sugar = gas.  The worst gas.

So this holiday season, I’m going to take that extra cookie.  Eat that extra truffle.  And order that gingerbread latte.  Why? Because living without a stomach isn’t all hearts and rainbows and sometimes you just need a little reward. 

Happy Holidays to you all and thank you all for your continued support.  May all my stomachless friends enjoy 1st, 2nd, and maybe 3rd small helpings of Christmas dinner. 

Perspective

Hey everybody! It’s been a couple of months since my last post and it seems only fitting to write another post as it is stomach cancer awareness month.  Since being diagnosed with Hereditary Diffuse Gastric Cancer syndrome, I have tried to make it a point to educate a couple of people each month about the CDH1 + mutation and stomach cancer.  Lucky for me, I work in a health care environment where I speak to a variety of people daily so the opportunities arise often.   Usually it starts with the patient casually mentioning something about me being skinny or thin.

Recently a coffee order was being taken at work and the conversation went something like this:

Co-worker: “Would you like a coffee?”
Me feeling my usual post meal digestion sleepy: “For sure”
Co-worker: “What would you like in it”
Me: ” Double cream”
Patient looks at me in awe, chuckles and asks:  “Double cream? How do you stay so thin?”

Depending on the patient and time, I often proceed by explaining to them about the CDH1+ mutation, the effects, the surgery and future breast cancer risks.  If time I’ll slide in the genetic testing criteria and close with, “thanks to science, I’m still alive and I’m forever skinny.”  We usually have a good laugh.

Not to overburden everyone with an abundance of information, here is the genetic testing criteria for CDH1 at Mount Sinai Hospital in Toronto:

“Eligible families who have at least two relatives with diffuse-type gastric cancer, at least one diagnosed under age 50, or families with at least three relatives with diffuse-type gastric cancer at any age. Families with once case of very young diffuse-type gastric cancer (e.g. under age 35), or families with diffuse-type gastric cancer and lobular breast cancer may also be considered.”

For more information on HDGC from Mount Sinai Zane Cohen Centre click here

For more information on stomach cancer, check out No Stomach for Cancer’s webpage

 

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Both lines are the same length but may appear different depending on which one you are viewing

I recently saw a person with a tattoo of the image featured above.  It was all too familiar as I used to draw this as a kid.  I asked him, “does your tattoo have any particular meaning?”  He replied, “it means life is about perspective and can change depending on how you look at it”.    He had been through some troubled times in his life but had managed to persevere and come out on top.

On Friday, I was at the gym participating in a step aerobics class.  After finishing the first cardio peak track, the instuctors announces, “we just burned 600 calories!”.  In the past, I used to like hearing this as it meant that I was really getting a great work out as I was burning off all that iced cream.  However, now when I hear her announce that, the very first thing that pops into my head is, “how will I make those calories up?”.  Then the next track finishes and she hollars, “we burned another 300 calories”.  At this point I’m thinking, that’s 900 calories I’ve burned.  I’m going to have to do a lot of eating to make up for that.  It’s funny because this instructor probably thinks that the majority of people there are there to maintain or lose weight.

It’s funny how a simple messages can be perceived so differently.

Pancakes are back on the menu!

About a month ago I reached out to my fellow stomachless friends about some breakfast ideas that wasn’t oatmeal or eggs. I learned that they all could eat pancakes. I was both shocked and excited with this information.  I had been avoiding pancakes for the past year because every time I ate them, I would end up feeling ill and falling asleep. Steve suggested I try birch benders paleo pancake mix. Sadly, we quickly learned that they cannot ship to Canada so I resorted to pintrest to find a paleo pancake recipe. Low and behold, I found one and have been eating them every weekend.  
The biggest difference was that it used almond flour instead of regular flour.  I also found a great waffle recipe using the same principle.

I haven’t been bold enough to put my usual peanut butter or syrup on them yet but I have put chia seed blueberry jam on them and have been fine.   Needless to say, I have been eating pancakes every weekend since this new discovery.  The almond flour can be more expensive but it’s totally worth every penny. 

Pancakes and Waffles are back on the menu!

The Starbucks Experience – a 2 year, 4 month update

One of my new favourite things to do is purchase an expensive delicious beverage from Starbucks and spend the next 1-2 hours blogging away or writing in my own personal journal.   Why do I purchase a six dollar coffee when I could just make one and write in the comfort of my own home?   It’s all about the experience.  Plus, it takes me a good hour to finish my grande flat white latte.  There’s something about observing the hustle and bustle of the world around us.   People coming, people going, long time friends meeting up after a year of not seeing each other, parents saying goodbye to their kids who are going off to university, widowers and widows, business people doing business things, students studying, and me – the stomachless blogger. 

The interesting thing about having a health scare is that it changes your perspective on life.  It forces your to slow down and evaluate where your priorities lie.  It shakes you out of your normal routine and forces you to develop as an individual.  You truly understand how many people love you and are supporting you.   I realized that everyone is writing their own story that I may know nothing about.   Maybe that’s why I have taken a new love to hanging out in coffee shops.

Cheers!
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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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