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.

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On the road without a stomach

I’m sure at this point, people are wondering….where have I been?  It’s been a busy month to say the least. So many exciting things have been going on and just as I’m going to write the post for my past exciting adventure, another one creeps up.  This post will focus on the past two adventures – Philadelphia and Cuba.

I’ll start with No Stomach for Cancer’s Spotlight on Gastric Cancer in Philadelphia last month.  I’m still glowing from the experience.  Not only did I get to meet Dr. Parry Guilford and his research team, but I also had the opportunity meet many people from the No Stomach for Cancer community.   Many of these people have provided me with much support over the past year with CDH1.  In addition, I also had the opportunity to share a meal with Marne, a fellow CDH1 blogger, and her husband Kyle.  The funniest part was that Kyle was actually the minority at the table – being the only one with a stomach.

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To save you from the bore of all the details of my trip. I’m going to list a few of my highlights from the trip (in no particular order).

1) I was lucky to be able to travel to this conference with my mom.  Many people there had lost parents or other family members to gastric cancer and I felt so thankful that my mom and I could enjoy this experience together.

2) I was in a room with many other people living without stomachs. When am I going to be in a room with that many stomachless people?!?!

Thanks to Dr. Parry Guilford and his team (front and centre), we can all live to tell the tale

Thanks to Dr. Parry Guilford and his team (front and centre), we can all live to tell the tale. Everyone in this photo (except for Dr. Guilford) live without stomachs!

3) I was able to network with others in the No Stomach for Cancer community.  One of my goals of attending the conference was to learn more about pregnancy post gastrectomy.  I was able to spend a lot of time with one woman who has been pregnant twice post gastrectomy and is doing well.  It was great to share stories and increase my knowledge that pregnancy post gastrectomy IS possible although classified as high risk.

4) Mom and I realized that we really are cheap dates and were able to split every single many meal throughout our trip – yay no stomachs

5) I was able to see Philadelphia – including the Rocky Stairs.  Only seems fitting given the challenges I’ve overcome over the past 12 months.

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At the top of the Rocky Stairs at the Museum of Art

6) As a physiotherapist – I noticed that many people who had gastrectomies, also had the same slouched over posture while sitting, standing, and walking.  It’s something that was really eye-opening and I’ve made a bigger effort in becoming more body aware and correcting my own posture as I too fall into this category.  I would advocate for all those who have had a gastrectomy to see a physiotherapist to avoid long-term consequences of having an the abdominal surgery.   (How many of you just checked your own posture?)

Phili was definitely a great experience and I hope to be able to attend many more events like this in the future.

The second big travel trip I have successfully survived was Brandon and my recent trip to Cuba.  I had a great trip with majority of it sitting in the sun and one day trip to Havana.  However, I realized that traveling without a stomach has it’s challenges but it’s doable.  When you travel, you often will go for long periods of time without eating a meal.  Often you are required to be at the airport 2-3 hours early and then you have your plane ride.  By the time you get to your destination and find food, it could be hours later.

I had eaten breakfast around 8am at the airport but didn’t eat another sit down meal until 4:30pm.  At that point, I was tired, weak, fatigued, and had a massive throbbing headache.  Thankfully, Brandon was able to find us food at the resort and we were able to eat.  I instantly felt better and the headache was gone.  I don’t think I’ve ever experienced that before since surgery so now I’m fully aware of the consequences of letting yourself get low on food stores.

Often I will compare this feeling to a video game.  You are a character running around in an adventure and your health bar begins to run low. At first you are so fast and charged but as your energy level depletes, so do you.  BUT, as soon as you eat or restore your health, the energy bar instantly goes up and you feel instantly better.  It’s amazing how much food does for you.

Brandon and I ate half of our meals together and half of them apart.  At home, we eat together at the dinner table, but when Brandon finishes, he can go do other things while I finish eating.  However, in Cuba, he would finish his meal and then patiently wait for me to finish.  It wasn’t necessarily bad, but definitely different.  Plus, the wait staff are so efficient that once they notice your plate isn’t full they try to take your food away.  This happened a lot for me since my plate was never full and I took many breaks.  Most of the days when we ate alone, I had to do Sudoku puzzles or something to distract me or I would eat too fast and pay for it later.  On the plus side of things, neither of us got food poisoning…but wondered if it’s even possible without a stomach?

I brought oatmeal for a snack because I figured they didn’t have it in Cuba and it was a good thing that I did.  I have learned that oatmeal is something I can’t go two days without and definitely a staple in my diet.  Also, I would often go on my daily scavenger hunt to find bananas at the buffets.  When I found them, I would always take a handful and sneak out of the restaurant.  Banana’s are another staple in my diet.

I was concerned also about what I would drink at the all-inclusive resort since many of their beverages are sweetened.  On the second day I took a risk and ordered a pina colada and was fine.  Big win.  I’m assuming I was okay because the juice and sugars were all natural, but who knows. I was pretty happy.  Since I still have difficulties drinking a glass of water, I was able to water down the slushies to create my usual 1/2 juice, 1/2 water combinations.  There also was an ice cream bar and I was able to eat a scoop of ice cream and feel okay.  Double big win.  I have noticed my tolerance for sugar has increased as long as I pace myself…not sure if that’s a good thing though…haha.

Before we left for our trip, I had to go out and buy a set of new bathing suits since all I owned were bikini’s.  I ended up picking up a few nice tankini’s a few days before the trip so I could keep my scar out of the sun. However by day two, I caved and rocked the bikini for a day.  There were people of all different body types rocking the bikini, so I figured, why not?  If anyone asked what happened, I sure had a good story to tell.  I think that day was huge and more of a celebration in terms of accepting my new body image and I was proud to overcome that barrier.

So that’s my mini travel blog about traveling without a stomach.  I have much more information to share but I’ll be back soon to write my mandatory gastrectoanniversary blog.  This time last year, was my last day with my stomach.

Lookin’ Good, Feelin’ Good

Spring is finally in the air here and the temperatures are such that I was able to unearth my spring wardrobe.  After pulling it all out, I repeated the process that has become all too familiar to me, try things on, look in the mirror and debate if it really is too big, convince myself that it REALLY IS too big and say goodbye to favourites.   After repeating this process for the third season in a row, I was left with a pretty bare closet.  Which only meant one thing….more shopping!

For those who have been following my journey, you will know that I recently had a makeover from the Cityline team.  As part of that makeover, mom and I received a gift card from Bayview Village located in the big city.  After the show, Janice (the stylist), offered to meet us at Bayview village to help us spend our gift card.  This outing occurred last Friday and it couldn’t have come sooner.

I was really looking forward to meeting up with Janice again because she is such a positive and inspirational person to be around.  I spent two days with her for the Cityline show and clearly it wasn’t enough.  While we were shopping, it was amazing to watch Janice in the clothing racks pulling many pieces of clothing to try on.  She just knew what to pull to put together the perfect outfit.  She also gave me a lot of great style tips. Did you know that there are different types of bras and there are specific cup shapes for your body type!?!?  As a person who lived in yoga pants and sweaters, this experience was definitely eye opening.   It was exciting to come home and hang all my new clothing up in my closet.  I used to spend fifteen minutes trying to figure out what I could wear because I didn’t have anything to wear, and now it’s spending fifteen minutes deciding which new outfit to wear.

But what I have learned since the Cityline experience and even more so after shopping with Janice is that when you look good, you feel good as well.  I used to watch a lot of “What Not to Wear” and the person who was receiving the makeover would always mention how much better they felt afterwards.  I know it’s T.V. but I fully understand what they are talking about now.

I would definitely recommend anyone to see a stylist but especially for those who have gone though similar experiences as myself.  It really is a morale booster and helps you appreciate your new body to a different level.   Thanks Janice!

Janice is currently developing her webpage but when it’s up. I’ll be sure to link to it.

See some of you in Philadelphia on Thursday!  I’m sure I’ll have a lot to blog about after this week.

Hurry up and Wait, Return of clear fluid diet, and Pancake brain

This past week has been a busy one and also a little reminiscent to the days when I was making frequent trips to the big city for medical follow-ups.  Over the past two weeks, my mom and I have made four trips to Toronto.  Thankfully, three were for the Cityline Makeover and only one was for a medical follow-up.

Cityline update!

Mom and I arrived at the Cityline studio at 8:30am to be prepped for the taping.  Our hair and make-up was completed by 9:30am and the show’s taping began around 10am.   Mom and I were backstage for the majority of the show so I’m not sure exactly what was occurring on stage.  What I do know is that the show focuses on topics about life after cancer.   In addition, the entire audience consisted of cancer survivors and caregivers which was really special and truly a celebratory show.   The set was glamorous and I heard that it was one of the nicest sets they have had on Cityline.  I managed to snap a shot of it before the audience was seated.

The set

The set

Around 10:30am, Janice (stylist) dressed my mom and me in our outfits.  We were revealed to the audience around 12:30pm.   Coming out onto the stage was pretty exciting and I was able to speak on camera with Tracy Moore (Cityline host) for a brief moment.   I was both nervous and excited.  The trickiest part was knowing where to look because there were cameras and screens all over the place.

After this experience, I have a larger appreciation for the T.V and movie industry.  Hurry up and Wait is a common phrase in the industry and after having the two days of filming for Cityline, I have learned that you have to be very patient but also be able to act on the fly.   It was a flurry to get everyone ready and then we all waited until it was our time to go on the stage.  I am looking forward to watching the final cut tomorrow (Tuesday March 31st) when it is aired on Citytv.

Return of clear fluid diet

The second big thing that occurred this week was experiencing my first colonoscopy.   Before being diagnosed with the CDH1 mutation, I figured a colonoscopy wouldn’t occur until I was over 50.  But since colorectal cancer is loosely linked to CDH1, I am starting screening now.

The actual procedure was a walk in the park, however, the prep for the procedure was less than pretty.  The day before a colonoscopy is performed you get to experience a forced detox of your body.  Your diet is clear fluids all day and then a flush (pun intended!) throughout the evening.  I won’t go into all the details but I will say, I was thankful for my ipad and smartphone.

The clear fluid diet was difficult as a stomachless person.  I still cannot tolerate a large intake of sugar and especially if there’s nothing else in my “tube”.   So I ended up drinking chicken and beef broth all day.  I also drank water downed juice.  Within the first 3 hours of waking, I started to feel like a space cadet – fatigued, and just not 100% with it. I could function but definitely was not on my “A” game. The staff meeting that I ran was probably a good one to remember.  It was surprising to see how much your body changes without sustenance.

During the same appointment, I also underwent an endoscopy with dilation.  I haven’t noticed too much of an much issue eating since the last endoscopy in November but since the gastroenterologist was going to look at the anestemosis, he said if it needed dilation, he would perform one.  After awakening in the recovery room, I was told that a dilation was performed and some small polyps were removed from my colon.  The polyps will be sent for investigation but the gastroenterologist assured me that they will be a non -issue.  Yay!  Since this appointment, I have noticed a significant improvement in eating so I guess the stricture wasn’t 100% gone.

Pancake brain

Here in Ontario it is the season where our maple syrup trees are tapped to create maple syrup.  Often, there will be “sugar bush” festivals where you can go see the trees being tapped and eat pancakes.  Inspired by the season, I decided to make some pancakes for myself to eat at home.

Prior to surgery, I really enjoyed eating pancakes.  After surgery, pancakes are something that I have tried numerous times with limited success.  I was not willing to accept that they may be something I shouldn’t be eating anymore.  I have tried at least five different recipes and all come out with the same outcome – first nausea, followed by extreme fatigue and the sweats.  I have now deemed this feeling, “pancake brain”.   This time I ate two pancakes and pancake brain lasted about an hour.  The same thing still happens with me with other foods heavy in wheat flour.   If anyone has a good pancake recipe that they can tolerate post gastrectomy, I’d love to know!

No Stomach for Cancer Spotlight on Gastric Cancer

Last blog post I had mentioned that my mom and I were planning on going to Philadelphia to attend the latest conference on hereditary diffuse gastric cancer (HDGC).  Our trip has now been booked and I am looking forward to connecting with others who have also been affected by CDH1 and HDGC.  I’m hoping to also meet up with some people who have been following my blog.

I can now count down the weeks to the one year mark instead of counting up the weeks post recovery.  It’s amazing how fast time can fly!

10.5 Months – I’m going to be on TV?

Prior to surgery, I’ve always thought it would be cool to be a contestant on the TV show, Survivor.   I have watched all the seasons and figured I could pull it off.  I was athletic and thought I might have a chance at the social game.  However, after surgery, I’m not so sure I would do well with the not eating part of it.   Recent events have allowed me to be on television in a whole different light.

A few weeks ago my mom entered us into a “Cancer Survivor Makeover” competition for the T.V. show “Cityline“.   This is a Canadian National daytime T.V. show that focuses a variety of lifestyle topics.  I was unaware of this until she told me she put our names forward.  Next thing I knew, we were finalists, and then we were winners.  We didn’t think we had a chance but I suppose our story is unique.

Our makeover took place last week Wednesday.

We arrived at the Fiorio Salon bright and early and met the show’s producer, Mary Benadiba, who let us know how the day was going to run.  We would be interviewed, have our hair and makeup done, as well as be outfitted with new clothing.   We got to spend some one on one time with, Bill Rowley, Kerry BattersbyDino Dilio, and Janice Meredith (hair, colourist, makeup, and stylist, respectively). These people are experts in their fields and a few of them make regular appearances on the show.  I don’t think I stopped smiling the entire time.  I received some good tips about how to dress for my new body type as well as new hair and makeup tips. There was a lot of footage taken and it is going to be spliced together for a 2-3 minute segment during the show which is taped on the 24th of March. My mom and I are also going to be present during that show and are going to do a big reveal at the end in front of the audience and cameras. I’m both nervous and excited to see how it all comes together on the 24th. If you live in Canada and want to see it when it airs, check out the Cityline broadcast schedule here. For all others, it may be posted on there webpage after the show airs.

The most important thing is that I wanted to raise awareness that stomach cancer affects young people as well as older people.  Mom and I had no idea what was involved with our makeover, if there would be other survivors there as well, or that we would be on TV. We also didn’t know we would be interviewed and both wished we prepared better.  I hope the final cut of the video spreads awareness about hereditary diffuse gastric cancer and the CDH1 genetic mutation. Nonetheless, it was a wonderful day to remember with my mom and definitely an experience of a lifetime. Thanks Cityline!

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Activity update

I was banking on our trip to Banff for my snowboarding fix for the year but unfortunately, Brandon and I had to back out of the trip last minute.  The snow here is quickly melting now and I knew that if I didn’t get out at least once this season, I would be regretting it.  So on Saturday we went to a small hill about an hour and a half away.

The biggest thing I was afraid of was not being able to get up after buckling myself into my snowboard bindings.  It takes a fair bit of core strength to push yourself up off the ground after getting off the lift.  But lo and behold, I didn’t have any issues.  Big win!  I also was afraid of falling going down the hill because I still feel where the incision was made with quick muscle contractions and a fall would likely feeI like I was tearing in half. So I took it easy.  I did notice that my technique had to change going down the hill but that makes sense given I am 20lbs lighter than I was last year.  All and all it was a wonderful day.  I’m really happy I can cross another post surgery activity limitation off my list.

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Whenever I try an activity I used to do before surgery but haven’t tried after, it’s almost like I’m doing it again for the first time.  You are a little unsure if you are going to be okay and when you finish doing it and you are okay, it feels like another big victory.

I think the next adventure will be returning to the baseball diamond this spring.  I haven’t swung a bat, pitched, or thrown a baseball since summer of 2013.  I’ve played baseball all my life and I’m pretty pumped to see what the season holds.

In terms of energy level, I think it’s slowly returning. I have super energy days some days and incredibly exhausting days other times. It’s like a roller coaster. A few weeks ago I was hit with a very minor cold that lasted three days and just about put me out. Things like this never caused an issue before but now it takes a lot out of me. I’m looking forward to when I’m fully recovered and this no longer occurs.

Medical update

Two weeks ago, I met up with a GI Oncologist closer to home.  The appointment was arranged by my genetic counselor from Toronto almost 7 months ago. I was unsure about the purpose of the appointment but I figured it too much follow up with specialists never hurts. Plus, I may be able to educate him about CDH1 since it is less known about in my region.

I now realize that it was to connect me with a network of resources in town.  I will be seeing him annually which is nice because I have a feeling I will be discharged from my surgeon’s office and that team in May.

In about a week, I will have my follow up with the gastroenterologist who performed my dilatations to make sure everything is healing well along with my colonoscopy to screen for colon cancer. Again, screening is always reminds me I’m not clear of all cancer risks but at least the bigger one you can’t screen for is gone.  I can tell you that I’m really looking forward to the detox that will occur before the procedure. Haha.

Recently, Dr. David Huntsman and his research team released updated stats for CDH1 and associated cancer risks. It actually lowered my lifetime stomach cancer risk but given my family pedigree and my pathology results…..I’m glad my stomach is gone.

For the article, click here.

Food update

I’m eating well and I can eat….wait for it….bread! But not all types. I’ve discovered that bread made with sprouted grains (i.e. Ezekiel bread) is one of the only few I can eat so far. I can’t begin to tell you how much money I’ve spent on various loaves of bread only to find out that I don’t digest them well. Trial and error right?

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My portion size is slowly growing and now is similar to a snack size which is perfect because I can purchase a Tim Hortons snack wrap for $1.99 and call it a meal.

Besides bread the number one food that I miss and I keep trying to eat is ice cream. I tried a spoonful last week and thought I was being kicked in the gut for the next half hour. Not fun but for sure worth a try. You bet I’m going to try again later.

I still don’t tolerate large quantities of sugar well and I try to limit it to 11 grams or less. I can eat it but sometimes it results in a nice colon cleanse. Haha. Sorry if that was too much information but my fellow stomachless friends can likely contest.

 

On April 23rd there is  an event hosted by No Stomach for Cancer in Philadelphia, PA.    My mom and I are hoping to fly down there and connect with people who are also affected with CDH1.  I have never been to Philadelphia so it will be an exciting getaway as well.  If any of you will be attending, it would be fantastic to meet you all face to face!

Until then, keep smiling, look at the bright side, and stay awesome!

 

Don’t worry, it gets better

Over the month, I have made significant gains in the quantity of food that I can consume as well as the types of food I can eat.  The days of eating out and asking the waiter many questions about the ingredients in each meal are fading away.  I’m getting closer to eating a normal portion of food.  It makes me think back to what I used to be able to eat last summer and realize what I thought was a lot of food, was not  a lot at all.  No wonder I lost so much weight!  Plus, my body needed the extra calories to heal.  This is where I want to re-iterate to those who have just undergone surgery that you should not worry, it gets better.  My weight still fluctuates but I’m no longer seeing those drops of 1 lbs a week.

I’ve learned that there are two big things that upset my system:

1) Eating too fast – When you have a stomach, you usually feel uncomfortable about 20 minutes after eating.  It occurs after your brain realizes you are actually full.  This is the same for me as well; however, if I don’t chew my food enough it feels like I’m being punched in the gut until the food has been digested.  Since I don’t have a stomach, I don’t have that extra step of mechanical breakdown that the stomach provides.  Therefore, I have to chew my food a lot to compensate for this loss.  If I don’t chew enough, the food gets stuck or my intestines try to do this work and it isn’t nice.

2) Eating too much – When you have a stomach, it doesn’t feel nice.  When you don’t have a stomach, you can add – hot, nausea, intestinal discomfort, and pain in the abdomen (being punched in the gut repetitively) to the list.

The worst is when you put 1 and 2 together.  Then I really become the life of the party.

In terms of my medical appointments, my family doctor no longer needs to see me monthly for blood work.  My last blood work came back normal.  I continue to supplement my Vitamin D, multivitamin, B12, calcium, and Iron.  I don’t need to see her for another six months.  This is wonderful news!

Next month I will go for a follow up gastroscopy and I hope that I will be discharged from that clinic as well.  I will also be screened for colon cancer that day.  That same week, I will also be seeing a genetic counselor closer to home so I will not have to return to the big city for my follow up screenings.

My endurance has still not returned to 100% but I am learning how to pace myself to avoid those big fatigue crashes.  I remain optimistic that I will get back to where I was at before surgery as this year progresses.

So that about sums up my last month.  I’ll probably make another post in March after I’ve spoken to all those specialists again but until then, keep smiling!