It’s okay to have a bad week – an 18 month update

Early last year,  I blogged about Kubler-Ross’ five stages of grief.  It was more surrounding about my recent diagnosis of being CDH1 positive.  It’s applicable to a lot of life events and mourning the loss of your stomach definitely qualifies.

For some reason I had a difficult week a few weeks ago.  I woke up on Monday feeling extremely fatigued.  Not just tired but just not myself.  My weekend wasn’t too crazy so I couldn’t write that off as a reason.  Being in a healthcare field – I was able to pull myself together and continue motivating all my patients to persevere and deliver effective treatment plans but by night time I was wiped.  I thought I would just go to bed earlier on Tuesday and bounce back.  But same thing happened again on Tuesday.

By Tuesday evening, it all hit me.  My stomach is gone. It’s never coming back.  It unfortunate that I can’t eat certain foods and when I eat something that I can eat and is delicious, I can’t eat a lot of it.  I have to take a plethora of vitamins each morning.  I get lightheaded if I stand up too fast.  I have to wake up extra early so I have enough time to eat breakfast each day.   If I want to feel good for the morning, I have to eat oatmeal for breakfast.  I miss cereal.  I miss my stomach.

Maybe I should have waited another few years to have it removed? Maybe I could have lived my life a little longer with it? And so on and so on.

I don’t like people feeling sorry for me so I kept this all to myself.  Finally, Wed evening, I opened up to my husband and told him that I was having a hard week and that I really missed my stomach.  In a few simple words, he replied,

“Your stomach was going to kill you.  You made the right decision.”

I tell myself this most times when I start to feel frustrated by some stomachless challenges and I can get myself out of the funk within seconds but this time it wasn’t working.  It was good to hear it from someone else.

At the end of the week I randomly stumbled upon this letter that someone had shared on facebook.  It was all too appropriate and the timing was impeccable.

By that Friday I was feeling like my regular old self.

I am not writing this post for people to feel sorry for me. Please don’t. I am writing this to let all those CDH1 positive people out there who have had their Total Gastrectomies that it’s okay to have some time of weakness when you are always trying to be strong.

So following my not so good week, I’ve bounced back two fold. I’ve also made some great discoveries.

Right after surgery I tried not to combine liquids with my meals because it would fill me up too fast and I wouldn’t have room for those precious calories.  However, now I have realized that the more liquid I can consume BEFORE a meal, the easier time I have digesting that meal.  So now I try to drink some clear fluids prior to eating a meal to help get those digestive juices flowing or just prepare my new stomach for what is coming next.

When it comes to sleep, my sleeping patterns have never been the same post gastrectomy.  Some days I’ll sleep 10 hours a night and other times I’ll only require 4-5 hours.  Either way, I feel just fine when I wake up in the mornings.  After waking up at 4am back to back two days in a row I decided to investigate this a little further with my stomachless colleagues (thanks Steve, Rachel and Marne!).  Turns out we all have had this issues and we all figured it was just us.   I wonder if anyone else out there has this same issue?

I’m not so upset about this fact because I can get a heck of a lot accomplished when I wake up at 4 or 5am in the mornings.  I was happy to hear I wasn’t alone.

I stopped drinking Kefir a few months ago because to be honest, I didn’t love it.  But recently re-introduced it back into my diet and discovered that it has helped keep my GI flora happy and healthy.  I now try to drink a half a cup to a cup a day of it.  Kefir isn’t the most delicious but a necessity to staying fresh….if you know what I mean.

I’ve been doing strength training at the gym 2-3x a week and I am finally feeling like my strength is close to pre-surgery level.  I’m super happy that this has come back as I can now carry my entire grocery shop inside in one load.


The scale hit 118lbs this week and I was stoked. That is only 9lbs off of pre-surgery weight.  I knew it was likely temporary…and it was, but I haven’t seen that number in a LONG time.  I am sure that with continued strength training and continued eating, I will continue to gain weight.  After all, in the last year I’ve managed to gain 11lbs.

And to top it all off, I can now drink plain old water!  I still can’t chug it but it’s now an option. Some days are better for drinking it than others but I’m happy that it’s back on the menu.

It has taken me three weeks to hammer down and get this post out which only means one thing. Life is getting in the way!

Catch you all in a month. Happy Holiday shopping!






November is Stomach Cancer Awareness month


November is Stomach Cancer Awareness Month and it’s something that hits close to home for obvious reasons.  Prior to learning about CDH1 and Hereditary Diffuse Gastric Cancer (HDGC), I knew very little about stomach cancer and definitely had no idea that there were people out there living without their stomachs and have been for a while.  The goal of this blog is to share some facts about stomach cancer and if you’ve learned something, then I’ve done my job.

In Canada, the five year survival rate for stomach cancer is 25% (1). Stomach cancer is difficult to detect in it’s early stages as it rarely causes symptoms. According to the American Cancer Society,  the signs and symptoms of stomach cancer can include (2):

  • Poor appetite
  • Weight loss (without trying)
  • Abdominal (belly) pain
  • Vague discomfort in the abdomen, usually above the navel
  • A sense of fullness in the upper abdomen after eating a small meal
  • Heartburn or indigestion
  • Nausea
  • Vomiting, with or without blood
  • Swelling or fluid build-up in the abdomen
  • Low red blood cell count (anemia)

When you read this list, you can see that some of the symptoms are common among the general population.  How many people experience heartburn or indigestion out there?  I know I experienced heart burn since high school that worsened and was especially bad the five years prior to having my total gastrectomy.  I used to walk around with a constant supply of tums or other antacids.  Was this the beginning of stomach cancer? Who knows.  Often these symptoms can be attributed factors other than stomach cancer (i.e. stomach virus, ulcer, stress, etc).

HDGC attributes to less than 5% of stomach cancer (3).  CDH1 is a tumor suppressant gene.  Each person is born with two copies of the CDH1 gene which codes a protein called E-cadherin.  This protein is responsible for cell signalling and cell to cell adhesions.  When people are born with the CDH1 mutation, half of the team is already knocked out which puts all the responsibility on the remaining gene.  Researchers aren’t sure what knocks out the other one, but when it is gone – we’re in trouble.    This is why people with a CDH1 mutation or Hereditary Diffuse Gastric Cancer Syndrome are at a much higher risk for developing diffuse gastric cancer earlier in life.  The average age is 38 (3) but people have passed away as early as teenagers.

I’ve linked this before but to those new joiners to my blog (Welcome!) here is the link again. I think Dr. Perry Guilford does a really great job of breaking down such a complex topic in a way that we can all understand.  It’s from the No Stomach for Cancer’s Spotlight on Gastric Cancer event I attended back in April.  Skip to 27:54 to learn about CDH1.

Dr. Perry Guilford – 2015 Spotlight on Gastric Cancer

Genetic testing for the CDH1 mutation is available for families who fit the eligibility criteria.  In Ontario the criteria is as follows (3):

  1. At least two relatives with diffuse-type gastric cancer
  2. At least one diagnosed under age 50 or families with at least three relatives with diffuse-type gastric cancer at any age
  3. Families with one 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.

Genetic testing is a BIG decision and definitely not something to be done impulsively.  For those who think they fit the criteria, please speak with a genetic counselor.

Thanks all for sticking with me on this blog post to the very end.  I hope you all learned something and feel free to share!


  1. Canadian Cancer Statistics 2015 (2015, June). Retrieved from
  2.  American Cancer Society  (2015, March 16).  Signs and Symptoms of Stomach Cancer.  Retrieved from
  3. Mount Sinai Hospital Zane Cohen Centre. (n.d.) Hereditary Diffuse Gastric Cancer Syndrome – HDGC.  Retrieved from


Three decades down

On the 22nd this month I celebrated my 31st birthday.  I couldn’t help but recap the 30th year of my life.  At the end of my birthday blog post last year, I mentioned looking forward to what adventured 30th year would bring. I can tell you now that there were lots of adventures.

Last October I was struggling to maintain my weight. I was sitting at around 106lbs. I had been back to work for just under two months.  I struggled to maintain my weight as the stricture I had caused a lot of personal and family stress.  Physically, I was in rotten shape and eating was a continual experiment.

Well I’m happy to say that I now sit between 113.5-115lbs. I have not seen 112lbs on the scale for a long time. I’m at the gym at least 2x a week and am working a 32 hour work week with a near full caseload.

I have grown up a lot over the past year and continue to enjoy all of life’s small things. I’m ever thankful to have such a wonderful support network because without it, I would be lost.

I’m thankful for my health. Things can change so suddenly. Last week my mom (who also had a total gastrectomy in 2010) suddenly developed abdominal cramping. Eventually the pain was so severe she had to go to the ER. After taking a CT scan and running blood work, the doctors determined she had a “small bowel obstruction” and recommended investigative surgery. Five laproscopic incisions later and three nights in the hospital – mom was discharged home. Long story short, my mom is doing well and her small bowel is okay. My mom is just over 5.5 years post TG and this happened in a flash which made me remember that things can always change with no rhyme or reason.

CDH1 mutation still leaves me with a 40-60% chance of developing lobular breast cancer and I’d be lying if I said I don’t think about it. This month I have thought about it more as it is breast cancer awareness month and I received my letter that it is time for my annual screen. I’m sure the screen will be fine but screening always is a reminder that CDH1 mutation still is with me and my cancer risk is still elevated. Will I get a prophylactic masectomy? I haven’t decided yet but I do know I am going to wait at least another 7-10 years before seriously considering it.

I celebrated my 31st birthday with an impromptu hike with Brandon to one of my favourite places in town.  It’s a peak that looks over the entire town and the view is most spectacular in the fall.  After the hike we went to dinner at one of our favourite restaurants, Taylor’s Tea Room.  Normally they only serve breakfast and lunch, but more recently they have started to serve dinner on Thurs-Sunday.  We arrived at the restaurant around 7:45ish to an empty dining room.  We ended up having the entire dining room to ourselves for our entire meal.  It was an experience that was extra special and something that we couldn’t have planned.

So the big question is, “Did I eat cake on my birthday?” Answer – yes, I did. Did I pay for it? You bet. Was it worth it? 100% it was.

Livin’ lean – 16 month update

Tomorrow is October 1st and I almost missed my 16 month update.  I’ve been telling myself, “oh, I will blog this weekend” and then that time comes and goes.  There is one major reason why I’ve had a hard time blogging this month – I’ve been busy living life!

It’s true that my life has a ‘new’ normal.  But when can you drop the ‘new’ and just say it’s life?  When is ‘new’ old?  It’s now been one year and four months. Is it still a ‘new’ normal or is it just normal?  I’m almost ready to drop the new and say it’s just life.

Yea, I eat frequently throughout the day.  Yes, it’s true, you can always count on me for giving you a snack if you get hungry because you know I keep food on me at all times.   My friends know that if they ride in my car they will always need to move that bucket of nuts before they sit down.  I still eat more than I should at a meal and then pay for it later.  Food coma has a whole new meaning.

I mentioned returning to the gym last late last year. That lasted until March before my gym membership expired.  Over the summer I played some baseball but didn’t do much formal exercise. I am happy to report that I have returned to the gym 2-3x a week.   I also signed up for six personal training sessions for extra motivation.

On the first day, I received a mini assessment where my initial measurements were taken as well as weight and body fat percentage. My training goals were also discussed.  Shockingly, I have 16% body fat, which is similar to an athlete – Score! However, I also have the forced expiratory volume of a 51-year-old (this is how fast you can expel your air after taking a deep breath).  This taught me two things:

1) I am a great advertisement for my personal trainer when I work out with her
2) I need to work on some serious breathing exercises

I’m optimistic that with returning to the gym, I will be able to regain the strength that I have lost over the past year.  It was different for my trainer to hear that the purpose of my personal training was not to lose weight, but to gain weight.  Often, my trainer will point out to me that I’m smiling through my work outs no matter how brutal the exercise.  I don’t realize this is happening but I believe it’s because I’m happy to be back at the gym again AND because if you frown and tell yourself the exercise is brutal, it will be 10x worse. I guarantee it!

You can live without a stomach? – a 15 month update

I cannot believe that it’s already mid August.  Where has the summer gone?  This summer has definitely been an exciting one to say the least.

When I last visited the surgeon back in June, she mentioned to me that it would take 2-3 months to feel like I’ve returned to pre-surgery normal.  Well pre-surgery, but missing an organ sort of normal.  She couldn’t have been more correct.

As I mentioned last blog post, I changed jobs and started working at a new physiotherapy clinic.  I have been gradually building hours over the past six weeks and for this first time this week, I was able to put in closer to full time clinical hours.  It’s been a long time in the making and I’m pumped to say the least.

At work I am helping others get well but little do the patients know that they are also helping me return to normal as well.  Performing daily manual therapy on people as well as demonstrating a variety of exercises, has resulted in my body shape returning to pre-surgery form.  I am getting stronger as well as more lean.

I also try to practice what I preach and that means working on my own posture.  Often I find myself walking with forward head posture.  Essentially it means my shoulders are rounded forward, my neck in slight extension with my chin jutting forward.  This is something that has been stuck with me since surgery and I am now making a conscious effort to change it.  It stems from lack of core strength as well as not standing up straight for the month or two after surgery due to the incisional discomfort.  My brain learned that this posture was upright for me, when in fact, it was not.  When I stand erect it seems I am leaning slightly backwards but in reality I am upright.

Example of forward head posture on the right.

Example of forward head posture on the right.

Thankfully, as a practicing physiotherapist, I am able to give myself my own home exercise program to improve my posture. However, I would recommend that people who have had a prophylactic total gastrectomy see a physical therapist when they are cleared by their doctor to do so.  I believe it will reduce many problems that can creep up on us down the line.  I noticed at the “Spotlight on Gastric Cancer” event in April, that many of us had the same posture and I believe it is a result of surgery.

I often forget that living without a stomach is shocking to some people.  The other day I was in the vitamin aisle at the local grocery store and an employee asked me if she could help me out.  I mentioned to her that I was looking for vitamins that are easily absorbed because I was lacking a stomach.  The look on her face was priceless.  She said, “You can live without a stomach?”.  I wasn’t sure how to reply since I was very much alive and in front of her. Haha.  Its become a normal in my family as well as among my friends.  I’m part of a strong community of felIow CDH1 positive stomachless people and it becomes even more of a norm.    I have to remind myself of the feelings I felt when my mom first told my brother and I that she would be removing her stomach.   I speak of it so nonchalantly about it but to the general public, I guess it is a little bit of a wild thing.

I am happy to finally feel like I am returning to pre-surgery normal.  Looking back, the stricture really put me behind in my recovery, but there’s no point in dwelling on the past.  Just move forward and forward I will keep moving!






No Stomach vs. No arm? A 14 month post gastrectomy update

I have been meaning to blog for the past month; however, June was a wild month.  Emotionally and physically.

About a month and a half ago, I was presented with a new job opportunity with a different company.  I have been with the same company since I graduated from physio school and they have been very good to me over the past six years.  Even more so over the past year as I recovered from surgery.  However, this new opportunity was a hard one to pass up.  There was a lot of opportunity to grow as a clinician.  After serious consideration and long talks with friends and family, I decided to take the jump and resign.

The unknown is scary.  Leaving something you are sure about to try something you have never done before is difficult.  You aren’t sure of the outcome so why would you change?  Jump back to December 2013, I was working full time, living a regular normal life, and then….CDH1 positive.  Do I remove my stomach? Do I keep it?  I knew that living without a stomach was possible but how would it affect me? Was I making the correct decision? It was the unknown.  We all know what I chose to do and now look where I am now.  Happier, healthier, and stronger. So although I don’t know everything about what my new job is going to shape up to be, I do know that it is yet another adventure and you don’t grow if you don’t challenge yourself every now and then.

Now for the physical event…and it’s NOT GI related for once! I was playing baseball three weeks ago and was sprinting to first base when the first baseman crossed the chalk line and I slammed into her.  Next thing I knew I was staring at the beautiful blue sky.  I got up thinking I was okay, but was quickly proven wrong.  As the game went on, my right wrist and elbow became increasingly stiff and swollen which eventually took me out of the game.  I figured I would go to bed and then wake up the next morning and be 100% better.   The next day, I couldn’t bend or straighten my elbow and my hand was incredibly painful.  After a quick visit to my MD (who basically said I don’t want to see you, go to Urgent Care), and four hours in urgent care – I returned home in a sling and put off work for a week.  Luckily there was no fracture but to spare you all the details, I have a new respect for people who only have one arm.

The reason I am sharing this story is not for sympathy but to demonstrate success.  One day I caught myself saying, “I would rather have my stomach removed then to go through this with my arm again”.  The surgery is becoming more of something in the past and something I no longer dwell on 100% of the time.  My “new” normal is really becoming my normal.  The past two months have been huge for my recovery and I feel like I’m almost there.  At my last follow up with my surgeon, they let me know I was 2-3 months behind in my recovery due to the stricture and that I should be fully recovered by August.  I believe it.

So what does my normal look like now?

  • I still have to eat every 2-3 hours.  If I don’t, I usually start to get tired which is followed by bouts of feeling lightheaded and finally a throbbing headache. That usually reminds me that I don’t have a stomach.  I continue to live the hobbit life and have 2nd breakfast, 2nd lunch, 2nd dinner, and dessert.
  • I am able to tolerate more sweets but that usually results in flatulence.  Just know you’re taking one for the team, sorry friends.
  • I still don’t tolerate eating white bread products or heavy carbs (i.e. bagels, hot dog/hamburger buns, etc).  I end up feeling really dopey, foggy, and often fall asleep immediately after if I’m at home.  It’s just not worth it.
  • I eat a diet high in protein.  I still drink smoothies and add protein powder to my coffee.  I continue to make my own protein bars.
  • I am able to work part time.  It takes me about 15-20 minutes to prepare my food for the day for work due to all the snacking. I have to wake up 20 minutes earlier to eat breakfast because I can no longer eat cereal in 5 minutes or less.
  • I take supplements daily – B12 sublingually, multivitamin, vitamin D, calcium, iron
  • I miss eating large portions of ice cream, bagels, and sandwiches.  Actually just large portions in general.
  • I haven’t been able to break the 110lbs barrier.  I’m used to my body image and am only reminded that I am skinnier when I look at photographs of myself.

So that about sums up my June.  Last week I was notified that my hospital roommate recently passed away due to cancer.  She was an amazing woman, a fighter, and the best hospital roommate I could ask for!  I kept in touch with her over the past year and it was a shock to find out about her passing.  We had a lot of visitor parties in our hospital room and I was able to get to know some of her family.  My sincerest condolences to her family and friends.

It’s events like these that remind me that life is fragile and things can change quickly.  If you think you are having a bad day, just know that someone else is struggling to survive.

Catch up with you all in August!

Guest post from my mom – 5.5 years post gastrectomy

Happy Canada Day to all my fellow Canadians!

Today’s post is a little different from my usual posts.  Recently, my genetic counselor asked for some tips that we could give others about living without a stomach. She wanted to assemble a resource guide to help others with the CDH1 mutation decide to have surgery or not and to answer common questions about life after a total gastrectomy.

I decided to ask my mom if I could share her response to some of the commonly asked questions when deciding to have a prophylactic total gastrectomy. Of course she said, “no problem”.  My mom is now 5.5 years post total gastrectomy and is doing fantastic.  Although my recovery had some bumps in the road, it was a lot easier because I had my mom who had already been through it to give me advice.

So here’s my mom’s responses to some of the commonly asked questions about having a total prophylactic gastrectomy and also some of shared experiences about her recovery.   Everyone’s recovery is unique and my mom was in her early 50’s when she had her surgery.

On my decision to have the surgery:

Once I found out I was positive, all I could think of was my children and how they would be impacted. I wanted to set a good example for them and wanted to be alive to watch them grow. Because of Technology, I was given choices. Live a different life following surgery or have an 80% chance of a bad cancer diagnosis (without any control of outcome) sometime in the future.

I chose to do something with the knowledge I had been given. I was not afraid of surgery.

Gastrectomy truths and how I kept myself happy during the recovery period:

Your life will be different post gastrectomy. It will be a “New Normal” Not the same as before, not better, not worse, just different. Whenever I am having a bad “Food Day” I always remind myself that I could be dead. Makes me feel a little better instantly.   I ride out the uncomfortable feeling and it resolves 20-40 mins after the offending food(s) have been ingested.

Keep a food journal. Your food intake will be based on trial and error. Try something and if you have issues, leave it and try again in a few months. In the beginning, eat everything you can manage. Don’t worry about nutrition. You have vitamins for that. Just get as many calories as possible. Avoid sweets or simple carbohydrates (white bread, doughnuts, bagels) Rice, eggs, ham, nuts, cheese, beans, ritz crackers and processed foods go down easy. Fatty meats are easier to eat than lean and rare easier than well done. Prime rib and New York steak and salmon are favorites. So are French fries! Eat mashed potatoes, squash, carrots and peas and oatmeal and cream of wheat at every opportunity.

For someone who had eaten “healthy” and watched for weight gain, my “new normal” was whole new way of thinking . I still enjoy food, can eat as much as I want and not gain weight. Bonus.

For the first months post surgery, I would feel “stretched tight” after a meal. Get up and walk around. If you feel nauseous, do jumping jacks. It’s the last thing you want to do but it works. The uncomfortable feeling will subside faster.

You will be flatulent and smelly. Your body will eventually adjust to digesting the fats. I always have “Just a Drop” in my purse.

Your stool will be many different colours and usually looser. 5 years post gastrectomy and my poop looks like it did pre surgery.

You can drink alcohol and it hits you fast. It was at the 2 month mark before I had my first glass of wine.

Do you regret having the surgery?

Absolutely not. I am in much better shape physically than my peers. Go to the gym 3-5 times a week. Eat everything I want. Thinner than I was and have bigger boobs. Love watching my family reach their goals.

Life is good.

Life is good mom, well said!

Top 5 events in my life

My brother and I have always been very close.  When it came to my wedding day, there was no doubt in my mind that he would be my “Man of Honour”.  When we found out in 2009 that we had a 50/50 chance of inheriting the CDH1 genetic mutation, we decided it would be better if both of us had it or neither of us.

Yesterday, my brother, his girlfriend, my mom, dad and I sat around a large table awaiting to hear his genetic test result.  This was a situation all too familiar for our family.  In 2009, my dad sat with my mom to hear the result.  In 2013, my mom, dad, and husband repeated the same process.  Now it was my brother’s turn. Third time’s a charm right?!?!

Just before the genetic counselor joined the table, I told my brother, “remember when we discussed us both having the gene vs. neither? Well, I no longer feel that way”.  We all had a good laugh and then the counselor walked in.  After saying our hello’s she quickly cut to the chase.

“We all know why we are here today and I have good news for you, you are negative!” .  My mom did her happy dance and I immediately broke into tears.  This time tears of joy.  I am not a person who cries so this was a HUGE deal.  I didn’t even cry on my own wedding day! My dad kept his cool as always but we all know he was celebrating inside.   I jumped up and gave my brother a big hug.  We were all so happy.  The counselor then proceeded to show my brother the paper that describes what the test showed but she could tell that we were not paying attention.  After negative, I don’t think any of us heard anything else. Haha.

My brother had been preparing himself to hear positive for the past eight weeks.  He and his girlfriend had a game plan of what he wanted to accomplish before having his stomach removed.  We were obviously all so happy he was negative but also in a little bit of awe because we had heard about many families where more all siblings were affected.  The genetic counselor mentioned that it may be normal to feel guilt that he tested negative when I tested positive. But I assured my brother that that should be a non-issue.

Sometimes you may not realize how much something sticks to the back of your mind until it’s gone.  Although the test result was not for myself, I kept thinking of my brother.   It’s so fantastic to know that we can close the CDH1 book on my immediate family.

So now when I look at the top 5 events of my life thus far, this one definitely makes the list and a day that I will remember forever.

My brother and I at my wedding in 2012.

My brother and I at my wedding in 2012.

No Stomach, No Problem

This time last year, I just been moved to the ward from the step down unit at the hospital. I had survived my first two days without my stomach and was doing well. I didn’t know what the next year of recovery was going to look like but I knew there was going to be an adventure ahead.

Jump forward 363 days later.  I’ve lived for a full year without an organ that tried to kill me.  I have tried to look at every day with positivity and optimism but I can assure you all that not all of the last days were hearts, sunshine, and rainbows.   Majority of my days are great days but there are also days of challenge and frustration.  It’s hard to reflect on the past year without becoming overly emotional as it was definitely a year of personal growth.

I’ve learned that perspective is everything and it goes a long way. From the day I found out I was CDH1 positive, my perspective on life has changed and although I was optimistic before, I became even more so. It may seem odd to say that I became more optimistic when finding out I have a gene that puts me at a very high risk for stomach and breast cancer, but it’s the truth. I was given a choice to stop cancer before it stopped me. I also knew that feeling sorry for myself would get me no where so mine as well make the best of it!

When I have a hard day, Brandon reminds me that the alternative could have been a lot worse. It is all too true. When I look back over the past couple of years, I did have a lot of heartburn and the indigestion was worsening. I’m pretty sure that I would have died of diffuse gastric cancer if I did not remove my stomach. So, if I have issues eating, I just take a moment and try again later. If at first you don’t succeed, try, try again, right? If I had an issue rolling over in bed or lying down, just braced yourself and told myself that it will get better. When there’s a will, there’s a way. Any day I can get out of bed is a good day because there are so many people who cannot.

I’ve also learned that you should never take your family or friends for granted and that you are more loved than you know. I’m so thankful for all the support from family and friends during my recovery. Words cannot even come close to expressing how thankful I am for everything. Without friends or family, this year would have been a lot more difficult. I also developed a great network of new friends who also are stomachless due to CDH1.

I’ve struggled a lot with my work/life balance. Prior to surgery, I was a go-go-go person.  Even in the hospital I would ask the doctors when I could start doing this or that and they would remind me to take it easy because I just had a big surgery.  When I could not consume enough calories, was forced to cut back on my activities which was a really difficult thing for me to accept.  My body was telling me to SLOW DOWN.  I think the hardest hit was when I tried to up my work hours and then realized it was not working and had to cut them back down again.   Being a physiotherapist was and still is part of my self identity and something I really love doing. Cutting back was a difficult thing to accept and I am still working on returning to full time work. Thankfully, the company I work for has been incredibly understanding and I have been able to supplement my hours with administrative duties as I am now managing a few clinics in the company.

My energy level has still not bounced back to 100% and I am trying to push myself hard again because I’m not willing to accept that this is the way it’s going to be for me for the rest of my life.  It’s like when you first start to work out. At first you are really tired and sore, but once you push through it, you are a lot more in shape and have increased endurance.  I’m not back to normal yet, but I remain optimistic that I will get there if I just keep pushing myself a little bit at a time.

Although I’ve been told it is one year recovery post total gastrectomy, I know I’m still improving. I’m able to eat as much as you’d expect a thin person to eat and my weight is maintaining at a healthy 110lbs. I am a hobbit and I eat second breakfast, lunch and dinner. I have difficulties staying hydrated but I’m working on it. I’m always the last one to finish at the dinner table but that’s okay.  My baseball season just started and I was able to jump back into it as if I had never left (although I was sore for 3 days after…haha).  Thankfully, I’ve been able to return to the activities I participated in prior to surgery.

Living without a stomach is not a bad thing. It’s just different. Depending on how you look at it, it could be one of the best or worst things that happen in your life. No stomach, no problem.

The last meal my stomach ever contained

The last meal my stomach ever contained

Day 2 stomachless!  Feeling good with that pain pump

Day 2 stomachless! Feeling good with that pain pump

Hours spent in this area of the couch last summer

Hours spent in this area of the couch last summer

Realizing that my swallowing issue wasn't normal.  Stricture followed by a series of dilatations.

Realizing that my swallowing issue wasn’t normal. Stricture followed by a series of dilatations.


Breakfast 1 year post op. Takes about 20-30 minutes to finish it all.

Breakfast 1 year post op. Takes about 20-30 minutes to finish it all.

Incision 1 year post op - bikini worthy? Why not.

Incision 1 year post op – bikini worthy? Why not.