Almost 6 month update – Everything is awesome!

Last week, I started a list of things to write about for my weekly update (last Friday), but then became so busy I didn’t have a chance to get around to it.  So today, I’ll do a special two week update in one post.  Some old news, some new!

Meeting Colin last week was a reminder about how far I have really come over the past five months.  I had forgotten about all of the little things about recovery and visiting him reminded me about everything I have accomplished since surgery.  I am not back to where I would like to be, but I am getting closer to that goal each day.

The biggest change over the past two weeks has been my eating.  Big win!  After having the dilation a few weeks ago, I have noticed a large difference in my ability to swallow.  Since I am able to swallow more in one sitting, my small intestine has to adjust to the increased food intake.  This means I have to be careful about how fast I eat because if I eat too fast, I pay for it 15-20 minutes later.  Paying for it means anything from intense intestinal cramps to bloating to dumping syndrome and I must not forget – gas.    Before, the stricture was acting like a sphincter – limiting food passage into my intestine.  Now it’s mostly smooth sailing.  Which leads me to my food update!

The past two weeks I have been able to eat a variety of foods and it has been fantastic.  I got a lot of good food ideas from the gastrectomy book I bought off of amazon last month.  Most of the recipes in the book have been a success which has been exciting.  Things I am most excited about re-introducing into my diet are:

whole wheat tortillas – filled with tuna, cheese slices, and hummus.  Oh and sometimes for extra calories – spreading Philadelphia cream  cheese between the layers when I roll it up.
Apples – I used to eat one every day before surgery and I am so excited that I am able to eat them again.  Especially because they are in season right now
Whole wheat pancakes – with almond butter on top (I just eat 1-2 small ones at a time)
A small slice of blueberry pie – this pie was home made with minimal sugar and it was fantastic!
Also, last Saturday, my friends threw me a surprise birthday party and one of them baked a special cake for me that was sugar free and made with Japanese sweet potato instead.  I’m sure she spent hours researching the perfect cake and a lot of time to bake it.  It was super thoughtful and I was able to eat it without any issues.  Thanks Kiriko!
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Last update, I wrote about trying a Mass Gainer.  The idea was exciting but the outcome wasn’t that wonderful.  After drinking it, I would feel like my head was in the clouds and feel extremely tired.  The feeling took close to an hour to pass.   I decided that the extra calories was not worth it and ended up returning it.  I have a feeling the crash was due to the large quantity of carbohydrates added into it to bulk it up.  Also, there are a lot of other ingredients in it which must be difficult to digest.

However, my mother in law gave me “Raw Meal” for my birthday.  It is a very clean vegan organic protein that provides many nutrients and vitamins.  I was excited to take it because I have issues drinking Ensure or Boost (other meal replacement beverages).  But, I was a little weary of trying it because it’s third ingredient was “organic brown rice syrup” and the sugar content was 26 grams for 27 grams of protein.  Until this point, I have tried to limit my sugar intake to 9 grams or less.  I ended up mixing half a serving into a glass of lactose free milk and much to my surprise, had no issues.

Raw Meal - I have only tried the natural flavour so far

Raw Meal – I have only tried the natural flavour so far

I don’t know if this is placebo effect or anything, but I have noticed a large difference in my energy level since I started taking it.  If you can get past the chalky and gritty texture, it isn’t all that bad and to be honest, I’ll do it for more energy!  I am guessing it is so easy to digest because the ingredients are simple and pure.

In terms of my physical fitness, I am in rotten shape.  I may look lean and small but I can assure you that I am far from being in shape.  I feel the fatigue in my quads after climbing one flight of stairs.  I get short of breath after power walking for ten minutes.  I think about returning to the gym every day.  A while back I had mentioned that my family doc told me not to run yet.  Well, I have booked a ski trip to Calgary (Banff, Lake Louise) with my family for the end of February.  I missed my baseball season, I’m not missing my snowboarding season.  I’ll be physically ready by then…no if, and’s or butts.   My gym membership re-activates Dec 12th.  I will be back by then.

Me at Whistler - March 2013

Me at Whistler – March 2013

Tomorrow, my family and I will be participating in No Stomach for Cancer’s awareness walk.  November is Stomach Cancer awareness month and this walk kicks it off.  We will be doing a walk followed by a nice breakfast.  I plan to do some fundraising over the month of November for No Stomach for Cancer.  Their goal is to reach $75, 000 for research.  Currently they are close to $30,000.  If we could find a way to better screen or even cure stomach cancer, then future generations will not need to have the surgery that I have had.  If you would like to donate – click here.

I am following up with my surgeon next Wednesday and believe it or not, I have actually been booked for my next dilation for Nov 12th.  Unfortunately, both fall on Wednesdays and I am missing two more days of work.  I am hoping that Nov 12th will be my last dilation.  Fourth time’s a charm, right?

In closing, I want to wish everyone a safe and Happy Halloween!  Everything is Awesome!

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The Full Circle

Remember back in my early early blog posts, I spoke of the Gastrenterologist who did my original upper endoscopy with biopsy in late 2013?  Well I saw her again but this time, while visiting a family member I had never met before.

Until 2009, my mom had never met many people from her father’s side of the family.  Mainly because he passed away from stomach cancer hours before she was born.  After my mom found out she was positive for the CDH1 gene mutation she learned that her cousin was going to have a total gastrectomy at a local hospital.  A cousin she had never met before.  Mom was able to get in touch with her and was able to meet her for the first time while she was recovering.  It was during this time, my mom made the decision to have her prophylactic (arguably curable) total gastretcomy.

Fast forward to now.  Mom and I found out from her cousin that her son was going to be having his total gastrectomy at a local hospital.  It would be performed by the same gastroenterologist I saw early last year.  At the time, I was her first CDH1 case.

He had his surgery on Monday and mom and I were fortunate enough to be able to visit him on Tuesday as well as Friday.  Just before visiting him on Friday, we ran into my original Gastroenterologist while she was doing rounds.  I was super happy and excited to see her again.  We were able to talk a little bit and she still offered to do more follow-ups with me locally as well as my screening for colorectal cancer.  I mentioned to her that I had a post op complication and was getting dilations and she said she has only had 1 patient who had a stricture post op but that I was in very good hands with the physician I am seeing in Toronto.  We were both  puzzled about why one physician has patients who develop strictures while another does not.  All and all, it was really great to touch base with her again and I’m super happy we crossed paths once again.  Even though it was the first time, I have a feeling it won’t be the last.

Okay back to my visit with my 2nd cousin once removed (it took my mom, his wife and I a few minutes to figure out our relationship).  Even though we had never met before, I didn’t feel like we were strangers, it just felt like I was visiting a family member I had known for a while.  We shared stories and talked stomach-less shop.  I had forgotten a lot about of a lot of the smaller things about being in the hospital (i.e. going for daily walks around the ward, the infamous wet sponge to keep your mouth moist, feeling afraid to eat your first stomach-less meal).  His hospital recovery was amazing (even better than mine and I thought I was doing well!) and if he’s reading this now, I hope it’s from his home.

While we were visiting, his wife had mentioned that my blog was very helpful to them and I was really happy to hear it.  I can see that people are reading my blog but it all became really real when his wife came up to me almost in tears telling you that the blog has been so helpful to them.  It was really an eye opening moment.

On Friday evening, I was also able to meet his younger brother and his girlfriend who were also visiting.  He is still deciding whether to be tested or not.  I had forgotten about that time before being tested and remembered how stressful that time was for me.  Since it was Friday evening, we all decided to go out for dinner before parting ways.

His brother said it best while we were in the elevator going to the main lobby, “It’s funny we are all brought together because of a gene that tries to kill us all”.  Well said!

Dinner after the hospital visit

Dinner after the hospital visit

One year older. One year wiser

30 funny

Yesterday was my 30th birthday and what did I do? I went for dinner surrounded by my family.  Perfect.

Last year when I turned 29, I had envisioned going really big for my 30th birthday.  Go big or go home sort of deal.   Yesterday, when people asked me what I was doing for my birthday this year, I said that I would be going to work for the evening and then going out for dinner with my family to a local restaurant.  A completely different vision than what I had planned a year ago.  Probably a different vision for the majority of people who turn 30.

When you have a major surgery and learn afterwards that you really were a ticking time bomb that could have exploded any minute, your perspective changes in a lot of ways.  You realize a lot of things like how important your health is, how wonderful your support network is, and how we take a lot of things for granted.

Yesterday among all the sadness that struck our nations capital, I was thankful to be alive, enjoying a slice of home made chocolate (sugar free!) cake and home made ice cream (sugar free too, thanks mom!) with all members of my immediate family.

A month and half after my 29th birthday I found out about CDH1.  I’m happy to kiss 29 goodbye and see what adventures 30 has in store for me!

 

 

 

Who loses weight over Thanksgiving? Five month post op update

I have had an eventful past week and lots of updates.  Prepare yourself, this is going to be a longer post with ups and downs.

Last Thursday Oct 9th

I met with a dietitian who is part of my family doctor’s family health team.   I had no idea they even had one but after speaking to my doctor a few weeks ago, she recommended that I see her.  I wasn’t sure how much information I was going to learn during this meeting because I had already seen the dietitian at the hospital  (June 19th blog post).  But, I figured even if I took one piece of new information with me, it would be worth the visit.  I’m always game to learn more.  Sometimes at these meetings, I’m teaching them more than what they are teaching me.  So there really was nothing to lose and lots to gain.

A few times during the visit she referred to gastric bypass documents.   Rachel brought up a good point that the goals of a total gastrectomy for CDH1 mutation is to gain weight and not lose.  So the dietary restrictions are similar but also a lot different.  We want to gain weight not lose.  However, I did learn at the end of the meeting that a small amount of B12 is absorbed into the body by osmosis.  She also identified that I do not drink enough water during the day and should attempt to drink more fluid in between meals.  So the meeting was a win-win.

Thursday evening, I ate a handful of food and something gave me the WORST gas pains I have had since the 2nd day after surgery.  I was telling people that I couldn’t remember the pain that I experienced that day but that I could only remember that it was really painful.  I now remember what that pain felt like because I suffered for two hours after eating dinner.  I am not sure if I ate too fast or too much but it was awful and spent two hours curled up on the couch in the fetal position.  It was brutal!

Friday Oct 10th

I had my much anticipated third dilation.  My mom, her friend and I all made the trip back to the big city.  My appointment was for 11am and was promptly brought in and gowned up by 11:15am.  The nurses had a hard time inserting the IV but after two pokes, they were successful!  Inserting the IV is probably the worst part of the procedure closely followed by the throat numbing spray.  By 11:30am I was all ready to go!  But, there was a delay and I was taken into the procedure room and knocked out at 2:30pm.  Thankfully, I came prepared this time and was allowed to play my Nintendo 3DS!  Cell phones aren’t allowed but hand held consoles are (big win!).    After my procedure was completed, I was told that they were able to stretch the stricture to 15mm.  So now I only have 5mm more to go!

I was feeling good in the recovery room and for most of the way home…but I took a drastic turn for the worst just before I arrived home.  I started to feel really nauseous and almost threw up a handful of times.  I hadn’t eaten since midnight the night before so my system was empty.  I knew that I needed to eat though, so I forced myself to eat some chicken noodle soup that evening that my mom prepared.  Anytime I was upright, I felt sick, so I spent all of Friday night lying on the couch.  I had to cancel going to our friend’s post wedding celebration which was also big bummer.

Thanksgiving weekend

My parents, Brandon and I had planned a big shopping trip to the large shopping outlet in Grove City, PA. Saturday – Monday.  The deals are so good there we usually head down annually.  I woke up Saturday still feeling unwell but I wasn’t going to back out of a trip that has been planned for months, plus, I needed to replace my fall wardrobe!  I slept the majority of the car ride down and was able to muster up a bit of energy to shop a little bit Saturday evening.  By Sunday, I was starting to feel like my normal self again.  Maybe it was the shopping therapy?  I figured all of the sickness was a side effect from the sedative used for my dilation.

After arriving home Monday evening, Brandon and I went straight to Thanksgiving dinner with his family.  I was able to eat a small dinner plate of food as well as…wait for it…a sliver of blueberry pie!  Big win!!

After all the activity over the weekend, I was wiped and still recovering today.

 

Even though I really needed the dilation, the unfortunate side effect resulted in 1.3 lbs of weight loss between Friday-Saturday morning.  As of yesterday morning, I still weighed 104.3lbs.  I know earlier I mentioned about not going on the scale, but this time I felt it was validated given I needed to monitor weight loss following the dilation.  I actually lost weight over Thanksgiving weekend! That’s a first. Haha.

I think this is the first time I have actually felt the fear about losing the weight so quickly.  After calculating my BMI, I am so close to being considered underweight and need to start picking up my A game even harder then before.  I’m not afraid about my current weight, but it is concerning that I don’t have any extra weight to lose at this point.  If I get the flu this winter or maybe even my next dilation, I could be putting myself at much greater health risks.  Plus, I have at least one more dilation to go.

After a serious chat with Brandon, we decided that it was best for me to scale back my hours at work.  It kills me to cut back because it feels like I am going backwards.  However, I know that this is only temporary and gives me an even bigger reason to work on weight gain.  I also was unable to hit any of the goals I had set out for myself for the month of September which was another downer.  Brandon reminded me that it is a year recovery period and my year is a little longer because of my post-op complication.   I am still working on my mental state about feeling positive about this change because cutting back at work has been a really tough thing to swallow (pun intended!).  Sometimes I feel tired from the recovery game and just want to get back to my normal activities.  However, I know that once stricture has been fully dilated, I am optimistic that I will jump onto the fast track of recovery and catch up!

I recently learned about mass gainers and am going to start mixing it in with my smoothies.  I am hoping that it will give me the extra calories I need to gain the weight with minimal GI upset.  If it works, it will be gold because 1.5 scoops is about 350kcal!  That combined with my regular smoothie ingredients, I could boost my smoothie caloric intake to over 1000kcal.  A lot of mass gainers use maltodextrin as a sweetener and I’m not sure how I’m going to react to it but I am hoping for the best.  Fingers crossed!  I have also been using coconut milk to add to my oatmeal instead of lactose free milk because it has 100kcal per 1/4 cup.  It is pretty heavy but I seem to be doing okay with it.  Fingers and toes crossed!

The book that I mentioned on my last blog arrived yesterday and I have taken a look through the first few pages of it.  It seems promising and half of the book has simple recipes for breakfast, lunch, dinner, beverages and snacks.  I feel like it is a great reference for dietitians as well as people who have just had their total gastrectomy and not sure what to use for a reference.  It’s also a quick and easy read.

So a lot has happened over the past week and I’ve had some ups and downs physically and mentally.   I found this quote while reading my book from Dr. Peter Thatcher this morning and found it very fitting for this blog post.

“By remaining as positive as possible, and by focusing on getting healthier, it becomes possible to start to feel much better about your situation.  When you genuinely feel better in your mind, your body can feel better as well”. (Dr Peter Thatcher – The Art of Eating Without a Stomach: How to Thrive after Gastrectomy for Stomach Cancer).

Good timing!

 

 

 

When there’s a will, there’s a way

Well good news everybody, I have finally been booked for my dilation and it’s happening this Friday.   It couldn’t have come with any better timing.  This weekend is Canadian Thanksgiving and I am happy that I won’t be restricted with my swallowing.  It has been a long road of waiting and it’s finally coming up.  I am counting down the days like a little kid counts down until Christmas.  Only 2 more sleeps!

To avoid a long long story, I will give you guys the long version.  Just to recap, I was supposed to have my dilation end of August.  I’ve had two so far.  The first one was done in July and the second one about two weeks later.  I was told to return in four weeks to have another dilation.  This is where it gets messy.

My 2nd stretch was performed by a different specialist in the same centre because my original specialist had gone away on vacation for the month of August and I would be due for my 2nd stretch during that time.  At the end of this appointment, I was told to call the office in 3-4 weeks to discuss a follow-up and repeat dilation.  No problem.

When I called my original specialist at the end of August (just as I was instructed), I was told that I was supposed to book this appointment 3-4 weeks ago.  News to me!  The administrator told me I would NOT be getting in that week and questioned me on who told me that information originally.  Remaining cool as a cucumber,  I replied that it was fine with me, I was just doing what I was told to do.  I had hoped that I would be getting in at least a week later at the latest (first week of Sept).

After waiting a week, I hadn’t heard from the centre yet, I decided to contact my surgeon’s office to see if they could advocate for me.  Frankly, I was afraid to call the centre back because I feared getting scolded again.  Thankfully, my surgeon’s administrator, who I’ve now become BFF’s with, said she would gladly help out.

Two weeks ago, I had my follow-up with my surgeon.  Still no dilation.   The patient navigator at the office took over from here.  This is where I left off last blog post.  It took two weeks of telephone tag between him, myself and the hospital to finally be booked.

Since I’m a visual person, I created a calendar to show the timeline of events.

Calendar of Events Dilation

During the weeks of August 25th to Sept 22nd, I had a difficult time swallowing.  Lots of excusing myself from the table again.  I started to choose foods that were soft and easy to digest.  It felt like I had never even received the 2nd dilation.  It gets frustrating when you know the stricture is closing again and there isn’t anything you can do about it but wait for you appointment to be dilated.  Your mind can really wreck havoc again.  I decided to stop stressing out about it and just let things fall into place.  I had followed all the correct steps and all I could do is wait.

Somehow, over the past two weeks, my swallowing feels like it has actually improved a little.  I have less of a gurgle when I swallow and have had less times where I had to excuse myself from the table.  It seems like I can eat a little faster.  I definitely still have the stricture, but I think it may have actually stretched itself out a little.  That or I’ve become REALLY good at chewing thing down to a paste.

My only good explanation is that by removing some mental stress regarding swallowing has actually caused my system to relax a little and heal.  I used to joke about it but I actually am starting to believe I have used will power to open back up a little.

All and all, it doesn’t matter how it’s opening back up or if it actually is opening back up, I am feeling better with swallowing and that’s all that matters!

Happy Canadian Thanksgiving to everyone.  I will be sure to post food updates after this holiday focused on gluttony.

P.S. I stumbled upon this book that was recently published.  It’s called the “The Art Of Eating Without A Stomach: How To Thrive After Gastrectomy For Stomach Cancer” and it is written by Dr. Peter Thatcher who is a  Physician and Gastroenterologist at the Royal Cornwall Hospital.   I have ordered it from Amazon and I am hoping it will have some good tips!