I still feel hungry?!?!

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Yesterday I was fortunate enough to have a nice conversation with Hanna (fellow CDH1 blogger) about having our total gastrectomies.  Hanna had her surgery about five weeks after me.  We started talking about our recoveries and we both still feel hungry.  If we don’t eat for a prolonged period of time, we both have intestine grumbling.  For me it feels like what your stomach would do if it was grumbling only it’s in the intestines.

If I think back to biology 101, I know that hunger is stimulated by a hormone called, “Ghrelin”.  This hormone is produced primarily in the stomach.  When the stomach is empty ghrelin is released and travels to the brain (hypothalmus).  This causes a reaction in your body to increase hunger and prepares your gastrointestinal tract for incoming food. But what happens if you don’t have a stomach?!?!

I believe that this is where the secondary part to hunger comes into play….your mind!  I am most hungry at breakfast, mid morning snack, lunch, and dinner times.  I believe that my mind has been so conditioned to these meals for the past 29.75 years of my life that something creates the neurotransmitter to act on my hypothalamus.  I don’t know if this is possible but that’s what I’m going with right now.  I doubt there is much research out on prophylactic gastrectomies and ghrelin right now.  Maybe I should start a research project?   I think the closest research we have has to do with gastrectomies for weight loss but that is a different surgery then what I have had.   I am hoping this feeling never goes away because it reminds me to keep eating!

Speaking of food, I wanted to give a brief update on what I have been these days since many questions surround, “what are you eating?”.  I find one of the most difficult meals to figure out what to eat is breakfast.  I used to eat a bowl of cereal for breakfast every day before work.  I can’t eat fast enough to enjoy my cereal anymore and it just ends up in a big bowl of milky mush so I haven’t gone back to it.  So this is what I have come up with so far:

Breakfast Options

  • Scrambled egg cooked in butter – add cream cheese and lactose free whipping cream or cream (usually around 200kcal)
  • Steel cut oats with 2% lactose free milk – stir in some chia seed jam for some sweetness
  • Cheese omelet with bacon (but bacon can be hard at time to swallow)

Snacking is also an important part of my day and I have discovered these successful snacks:

  • Banana cut into small pieces with loads of almond butter (start with only half banana)
  • Egg, tuna or salmon salad
  • Smoothies!! Loaded with good stuff
  • Cheese and a few crackers
  • Cashews and other mixed nuts
  • Homemade granola bars
  • Popcorn made from the popcorn machine loaded with butter

I have learned that bread (even pumpernickel) and some pasta makes me feel like I’ve hit a wall for 30 mins to an hour after meals.  I relate the feeling to a ‘food coma’ that you can get with a stomach only you should multiply that by 100.    Due to this, I have been avoiding eating too many carbs throughout my day.  This afternoon, I am going to attempt to make a chia seed bread from my new cookbook.

Well after all this food talk, I’m hungry again.  I will follow up with my surgeon tomorrow because I haven’t seen her since pre-dilation.  I still haven’t heard back from the other doctor’s office about my next dilation appointment. I have a feeling there will be a lot of back and forth to the big city until I have my stricture problem resolved.  No worries though, I’m alive!!

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Post op week 9 – If I look like I’m thinking, it’s probably about food

I missed writing yesterday’s weekly update because I was wiped from the activities over the past week.  A lot has gone on this week. But this is a good thing.

Now that my eating is back on track I decided to volunteer with a data analysis project which involved sitting at a desk and inputting numbers into a computer.  It may seem mundane to some but it was great.  Sadly, I cannot return to my regular job so this was the next best thing to help occupy my time for the week.  I thought it was a good project to volunteer for because it wasn’t physically demanding and allowed me to eat all day.  Also, it would be like a trial run of what it will be like when I return to my regular job in terms of food prep.

I would wake up in the morning and assemble my food for my six hour day.  Doing some quick mental math that means I need to eat at least three times during that period.  I used to be able to wake up and get out the door in 30 minutes flat.  Now I must add another 30 minutes to eat and 30 to prep my meals.  I was able to get out the door in an hour and a half after waking (although I think in the future, I will prep my meals the night before).  Here is an example of what I brought.
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In the glass bowl is the “Sweet Potato Power” from No Stomach for Cancer webpage.  I also added protein powder to it to give it some extra calories.  The granola bar is homemade from the “Oh She Glows” Cookbook that a family friend recommended for me.  In the mini-thermos is a smoothie packed with calories. I drink at least one smoothie a day and pack it with 400-500 kcal.  Finally, you can’t forget the cashews.  If I eat a 1/4 cup of cashews it is equivalent to 320 kcal.  So here you have a total of about 1,200 kcal for half the day. Amazing.

** On a side note, I am thirsty often.  However, it’s not recommended you drink 30-60 minutes before or after a meal and definitely not with a meal.  So I often have to make a choice to have liquid or food and if I choose liquid, it’s like one lost meal for the day because juice water is the most thirst quenching.  It’s a tough thing to balance right now **

I ate the entire time I was at the desk and this week I did not lose any weight!  Oh and speaking of calories, I have learned that Costco’s poutine has a whopping 1290kcal per 1 cup.  Good for us stomachless people, bad for the rest of the world.

As the week went on, I became progressively more fatigued and by Thursday, I had to call it quits midway through the day.  My brain clocked out, my body was overall fatigued, and I was wiped.  All and all, I was able to put in 24 hours of work over 4 days which isn’t too shabby.  I forgot how much energy it takes just to sit up. I remember it took me two days in the hospital before I was able to sit up and I was only able to stay up for 45 minutes before I needed to have a nap.  I have come a LOONNGG way.  This week was a good wake up call for when I return to my regular work.  I don’t sit all day and I am constantly moving – it will be the true test to the caloric intake versus energy expenditure.

I visited my family doctor last week to discuss the issue of contraception as well as get a requisition for my monthly blood work.  We all know that I don’t need to have an ‘accident’ right now.   After some discussion, I was recommended to start the birth control patch vs. oral because we aren’t sure about absorbancy with the oral pill.  She also told me to start iron since I was showing signs of anemia from my blood work last month.  As I left the office, I started to think, “Is hormonal contraception the route to go for me because of CDH1 and my increased risk of breast cancer?”.  So I contacted my genetic counselor who then contacted a high risk breast cancer center.   We learned that the risk is little for me and hormonal birth control. Yay!  But my counselor and I both learned that I should start annual MRI’s to screen for breast cancer.  Up until now she thought 35 but Ontario starts at 30, so we all learned something new.  Again, everything for a reason!  So I will now start screening for breast cancer.

Let’s talk incision.  My incisional pulling has much reduced.  Yahoo!  I don’t feel my incision at all when I am sitting or lying.  I am able to roll left and right in bed now.  I have a lot of pulling after I eat and if I eat a lot, I am unable to stand straight afterwards until some food digests.  I continue to have numbness along the lower portion of my incision but I can now feel above it.  I still have the circle of numbness to the left of my navel.  I have less sharp pains along the incision that I had two weeks ago.  I get massive bloating after having milk so I have switched to lactose free milk and that has solved the issue.  Oh and for some odd reason, my backne (back acne) that I have had since I was a teenage is gone.  I’ll take it!

I am now one week and two days post stricture dilation.  The doctor said the stricture would stretch out and then likely constrict again.  This is why I need to go 2-3 more times.  By Wednesday, I hadn’t heard from the office to book me for my next appointment so I decided to call the office.  I really don’t want to go back to the way I was two weeks ago.  The admin said they did not receive orders from the doctor to book me again although he told me personally that he would book me again in 2-3 weeks but because he was going on vacation next week for a month and would ask his colleague to perform the dilation.  She said she would have to check with the surgeon and get back to me.  No response on Wednesday.  I called back Thursday and left a voice mail hoping that the surgeon put the orders in so I could be booked.  No response Thursday. Nothing on Friday.  I am hoping that I will hear from them next week for my appointment.  Over the past two days, I can feel the gurgle is returning and the food isn’t going down as well as it used to…it is scary but I remain positive though and I keep eating as much as I physically can!

I am following up with my surgeon this week because I have not seen her since I had my stricture dilated.  If I have not heard from the other office by then, I know that her office will put pressure on them because she takes great care of her patients and pride in her work and she would not let this go on.

So lots to blog about this week!  Sorry it’s semi scattered, I wanted to talk about a lot and  I am still recovering from the weeks activities.

To end off, here are some pictures of me picking blueberries and raspberries earlier this week since the weather has been so great and it’s good rehab for me.  Oh and a picture of my chocolate avocado smoothie with whipped cream on top.

Blueberries!

Blueberries!

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Blueberries for Smoothies and Jam

Raspberries!

Raspberries!

Delicious Chocolate Avacado smoothie for a blogging treat

Delicious Chocolate Avocado smoothie for a blogging treat

 

 

 

 

 

 

Post op week 8 update – Food!

Of all my recovery weeks at home, I think the 7th week was the toughest psychologically.  Once I learned that I had a stricture around 5mm I had something to blame for my eating issues.  It became frustrating to spit most meals back up because I knew the issue was semi-out of my control.  The action itself isn’t that bad but the process to get there became old really fast.  Attempt to try a food, wait a minute, feelings of it being stuck, wait another minute, excuse yourself from the table and do the deed, return to the table and try again.  Repeat. I had my X-ray on Tuesday of last week and by Thursday I decided that pureeing as much as I could was the way to go.  I mostly stuck to soft foods and thickened fluids.  This helped the spitting up immensely.

Since I knew my caloric intake was poor, I limited my physical activity which was also not good for my psyche.  If you haven’t noticed already, I am a ‘mover’.  I’m not used to sitting for long periods of time.  I kept reminding myself it is all part of recovery but it was tough to limit my activity because physically, I felt like I could keep going.

My week took a huge 360 turn after yesterday.  More on that later.

Wednesday was my follow up with my surgeon.  My dad, mom and I drove halfway to the big city and took the train the rest of the way in.  Since my appointment was at 3pm, we were concerned about rush hour traffic.

The resident and I discussed my weight issue and my upcoming dilation.  I let her know about my ‘good’ caloric intake days at 1,400 and she mentioned that that is not close to enough because I am still recovering.  Weight loss explained.  I again asked about activity limitations in the off chance I would be able to do more…sadly they were exactly the same as before.  Surprisingly, it can take up to 6 months for your abdominal wall to fully heal.  It takes 6 months for the stitches to dissolve as well.  That was a real wake up call.  When it came to incisional asthetics, I asked about cross frictions as well as therapeutic ultrasound, vitamin E, therapeutic laser, etc.  I am now allowed to cross friction but everything else should be avoided.  Good thing, because I started gentle cross frictions about two weeks ago.  The physio in me couldn’t help it!

On our way out, we ran into my surgeon and she asked how I was doing.  I replied, “very well!”. She then said, “very well even though you can’t eat?” and I said, “yeah, even though I can’t eat, I am still doing really, really well!”.  We had a good laugh and went home.

Yesterday it was back to the big city for my dilation. A day that couldn’t have come any faster.  There wasn’t a nervous bone in my body.  After all, I already had my entire stomach removed…this was like chump change.  I was so excited about the dilation that I had forgotten about the other parts of a gastroscopy…the IV line.

Mom and I arrived promptly at 11:00am for my 11:30am appointment.  Brandon had borrowed a car from work so he could take us back to the train after my procedure in the event I was too doped up to function.  He had the car from 10-3:00pm.  Once I checked in, I learned that my appointment was actually at 12:30pm and it takes 2.5 hours for the whole procedure.  By this time it was too late to tell him to turn around and go back to work so he came to visit for about half an hour before I was called in.  I felt bad because it took him 1.5 hours to get to the hospital (a drive that google predicted would take 16mins), $20 to park and another hour to get back.  He was in good spirits though.  Again, best husband ever!

I was called in at 12:30pm and gowned up.  After feeling my arms, the nurse decided to put warm blankets on my arms to try bring my veins to the surface.  She also called in an IV nurse because I would be difficult to poke.  After two pokes, the IV was inserted and by 1:00pm I was good to go.  At 3pm I was called for my dilation.  During the two hour waiting period, I was ‘fortunate’ enough to watch CNN play repeating footage of the Malaysian aircraft crash.  It was pretty depressing.  I also ran into a colleague who was in my undergraduate class who is now a physician.  Small world!

The procedure went without a hitch.  The doctor said that I had a ‘pin hole’ space.  He said that strictures that develop earlier are worse than later because you are at higher risk for perforation if you do too big of a stretch.  He also took a photo of my stricture.  That hole should be at least double in size, no wonder no food would go down!.  See below:

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He was able to increase the size of the stricture from ‘pin hole’ to 10mm.  He said that the hole will stretch and then shrink a little so he needs to stretch in series.  In two to three weeks, I will return to the hospital for another dilation and then again likely in September.  He said that, “We are going to get to know each other real well”.

By 5pm I was recovered and able to walk to the train.  Mom had picked up a large booster juice (710ml of smoothie) for me to drink since I hadn’t eaten or drank anything since midnight last night.  I was able to drink the whole thing over a 45 minute period without any after effects!  Honestly, I would have waited all day in that office to have that procedure completed. The actual stretching and scoping only takes 30mins.

By 7:15pm I was home and really looking forward to testing my new pipework.  I ate left over Indian food that I had struggled to eat the night before without any issues.  Score!  It was like night and day! Spirits lifted. Feeling good.  I just need to watch I don’t eat too fast because I believe the stricture acted like a sphincter that regulated food to my small intestine, now it’s a free for all.  I expect some nausea follow as my small intestine adjusts to increased food volume.

Since I am now two months post op.  I have a sore throat from yesterday’s work but honestly, I could care less. I can eat!  I am going to try eat as much as I physically can in case the stricture shrinks again.   I have to return to my family doctor for more blood work to ensure that my nutrient levels are normal.  I wish I had better veins but there are worse things in life to have.

To end off, here are two pictures of what I typically eat for breakfast and second breakfast:

Scrambled egg with 2 tbsp of cream and 1.5 tbsp of cream cheese

Scrambled egg with 2 tbsp of cream and 1.5 tbsp of cream cheese – eaten over a 30 minute period pre-dilation

Half a piece of dempster's ancient grain's toast with chia seed blueberry jam and almond butter.

Half a piece of dempster’s ancient grain’s toast with chia seed blueberry jam (thanks Jenny!) and almond butter – consumed in 30 -40 minutes pre-dilation

 

 

 

 

 

The grass is always greener…

Before surgery, I would watch what I would be eating and ensuring that I maintained my weight at a nice 125lbs.  People said that I did not look like I weighed 125lbs.  I used to joke it was because I was solid muscle.  If I started to gain weight, it was an indicator to cut back and watch what you were eating and go do more physical activity.

Fast forward to seven weeks later.  I am living what may sound like a dream for some.  Don’t go to work. Eat as much as you want.  Don’t even consider going to the gym to lose weight because you will never have to worry about that problem again.  Lie outside and read a book.

When I’m garage sailing, I have started to look through the clothing piles because I can usually score some nice clothing for a low, low price.  When I mention to people that I am replacing my wardrobe because I have lost a lot of weight, their response is always, “Oh that is so great, congratulations!”.  It’s funny how we view weight loss in our society. Before my surgery, I would have said exactly the same thing.

When my mom used to talk about the amount of weight she was losing and how easy it was to lose weight, sometimes you couldn’t help but be a little envious.  I now fully understand the weight loss battle.  My mom and I believe that it’s a really hard concept to understand unless you have lived it.  I have tried my very best to eat every two hours and load each meal with as many calories as possible but inevitably, I have lost another pound and now sit at 107lbs.  I hear it can take up to six months for your weight to stabilize.  I believe I need to hit about 2,000 kcal to maintain my weight and most days I struggle to hit 1,500kcal.  I know that this is why I am losing 1lb a week.

I have only seen one photograph of myself at this new weight.  It was the one I took for this blog and as much of a surprise it may have been for my readers, it was a real wake up call for me.  I see myself every day so the weight loss doesn’t seem as dramatic; but, when I compared the two photographs, I was shocked as well.  I used to stop our screen door from hitting me with my butt while I unlocked our main door to the house.  Now I have to angle myself a perfect way so the door doesn’t come slamming into my tailbone.  I can no longer sit on the baseball bleachers because they are too hard.  I am slowly learning to accept my new body.  But some days it can be a tough thing to swallow (yet another good pun!)

Studies have shown that people who undergo this surgery lose 15-20% of their original body weight permanently.  That puts me somewhere in the 106-110lbs range.  I am hoping to stabilize at 110lbs.  I used to talk about how the weight loss post surgery scared me and now it is happening.  We are all a little concerned.

I debated about writing this post because it doesn’t read like my usual happy go lucky posts but I think it’s important to see all sides of recovery.

But don’t worry about me! Overall, my spirits remain high.  I continue to improve daily.  I have been booked for my gastroscopy/dilation which is Thursday (tomorrow).  Yay!!!  I am sure this will solve all my weight loss issues because I’ll be able to consume more.  I have another follow-up with my surgeon this afternoon.  I look forward to being able to eat more and puree less.

This is going to be a busy blogging week!

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Post op Week 7 Update – If at first you don’t succeed, try, try again

First off, I want to quickly thank everyone who has been following my journey.  As I mentioned earlier, I started writing this blog as a way to share my pre and post surgery experience with my family and friends.  Since then it has grown and I now have over 300 followers which is beyond me.  Thank you all for sharing my story and helping spread awareness about Hereditary Diffuse Gastric Cancer Syndrome.  Again, I am so fortunate to be on the other side of hereditary diffuse gastric cancer unlike many others battling this disease.  My issues in this post are so small compared to the battles that others fight on a daily basis.

Tracking my caloric intake this week has been eye-opening.  Since I started tracking last week I consume anywhere between 1,000 – 1,300 calories a day.  I eat on average 7 times a day.   Eating really is a full-time job.  I know I don’t eat the most well-rounded meals because it’s all about what I am able to get down because the alternative is much worse. Here is an example of Monday’s intake which scored me 1,350 calories.

4:10am – Slice of Brie Cheese
9:15am – Scrambled egg with 1 tbsp of cream cheese, 2 tbsp of cream, 2 tsp of butter 11:40am – No Stomach for Cancer Super Protein Smoothie
2:45pm – 1 can of Flavoured Tuna
3:45pm – 1 Simply Whey Apple Cinnamon Bar
5:14pm – 1/2 avocado
6:45pm – Slice of Brie Cheese, Triscuit Original (4 crackers) with 100% Almond butter
8:11pm – Yogurt popsicle (made with Vanilla Yogurt and Trop50 Orange Juice)
11:40pm – High Protein Jello with a lot of whipped cream on top

This was a good day for eating.  On bad food days, I hit closer to 1,000 calories which isn’t ideal.  I have been recommended by the dietitian as well as the surgeon to drink Boost or Ensure.  However, I think there is just too much packed into this drink and I usually end up crumpled up in the fetal position on the couch for about 30 mins to an hour.  I wish I could tolerate it because it is filled with calories but it has struck out on numerous occasions.  Instead, I have discovered Harmonized Protein.  It doesn’t seem to upset my system and I don’t seem to crash afterwards.  Hooray!!

Since I cannot eat much at a time (due to the stricture), I try to calorie load EVERYTHING.  Sounds like the average person’s dream, right?  But how do you calorie load if you can’t have a lot of sugar?  Fat and protein!  Did you know you can add olive oil to smoothies? I do now!  Did you know that 1 tbsp of whipped cream has a whopping 50 calories in it? Yes please!  Egg salad loaded with miracle whip….awesome….even better, egg salad on  potato chips.  No joke, I tried it once.

If I look at the bright side having this stricture, it has really taught me about chewing well and eating small amounts at a time.  Prior to surgery, I would womp down a full dinner plate in about 10 minutes flat…if that.   After the stricture is fixed, I will feel like a million dollars.  I should also be on the road to weight maintenance and maybe gain (hard to do but I have heard of some people who have) .  On the down side, it is really difficult to eat most foods and I have now geared myself towards soft foods or thickened liquids.  I continue to celebrate every meal I can complete without having to get up and spit it up.  That’s right, more high fives all around.

Every morning I wake up and weigh myself.  I was feeling really great about Wednesday’s food intake and figured I would wake up and weigh the same and maybe more than Tuesday.  However, I stepped on the scale yesterday and it read 107.1 lbs.  I think my exact words were, “you’re kidding me right?”. I then proceeded to rotate the scale and move it to different areas of the room hoping that this was a fluke.  Unfortunately, it was the same.  So instead of getting really bummed out, I decided that I will eat as much as I can and do my best until my stricture gone.  Being bummed out only stresses you out more and that will for sure lead to more weight loss!

Despite the low caloric intake, my energy level still continues to improve which makes being sedentary very difficult.  I now limit myself to one 3-4 hour outing a day.  If I go out too long, I end up forgetting to eat and that combined with increased activity is not a good combination.  A three to four-hour outing is good enough for a protein bar and a portable smoothie.  Anything longer, I’ll need a lunch pail!  Oh and on a side note, I still feel hungry around breakfast, lunch and dinner but not other times….weird.

I also have high and low energy days.  Some days I can feel close to normal and other days I can feel exhausted.  I think a lot of it has to do with eating the appropriate types of food. For instance, bread always makes me exhausted about 15-20 mins after eating and it could last for half an hour to an hour.  The body continues to adapt to life without a stomach.

In terms of my daily tasks, rolling to the left and right in supine is becoming easier.  I continue to need reminders to stand up straight.  My seasonal allergies have kicked in this past week and I have started to sneeze which is never fun.  However, I’m able to blow my nose with some force now.  I was going to take an antihistimine, but now that I don’t have a stomach, I am not sure if the absorption is the same and I plan to consult the pharmacist first.

I continue to have incisional pulling and the random sharp pains.  Although it is annoying, it is a good reminder that I am still healing and to take things easy.  Yesterday, I fell going up my stairs and thankfully my arm took the brunt of the fall.  I told Brandon if I fall again, I will be going to my doctor to talk about a B12 shot again since poor balance could be a sign of deficiency.  My brain is still getting used to my new body I think!

Speaking of which, I am now looking at size 0-2 sized bottoms. It is a scary thing because sometimes the size 0 doesn’t fit with some brands.  But on the bright side, I can now buy a lot of awesome clearance clothing.  I am still adjusting to my new body image and it is a tough thing to swallow (pun intended!) because the weight loss has happened so rapidly.    I put on a pair of my Lululemon pants earlier this week and I can no longer fill them out.  The day has come.  I will still hang onto them for a little longer though because I can’t part with them just yet. There needs to be a mourning period. Hahaha.

I continue to wait for a phone call to book me for my endoscopy but I am following up with my surgeon again on Wednesday.   My surgeon’s admin assistant is awesome and has been pressuring the specialist for an appointment for me.  We have become BFF’s.   I am lucky to have such a great team looking after me.

Okay, let’s eat!

 

Upper GI X-ray update – Good and Bad news

It’s days like yesterday that remind me why I have not returned to work yet and why I am still recovering.

Yesterday, I had my upper GI X-ray.  Since it was an upper GI x-ray, I was not allowed to eat or drink anything past midnight on Monday.  Fasting is difficult with a stomach and even more difficult without one!  Luckily my x-ray was at 9am (but I was told to be there by 8:30am).

Aside: Because I had to travel back to the big city, it involved starting my day at 5:30am in order board the train on time.  Mom and I calculated that from door to door, it takes about two hours to get to the big city.  The trip involves driving to the train station, boarding the train, switching to subway, and walking to the hospital.  To be honest, by car it isn’t much faster due to the ongoing construction on the major highways.

The trip to the hospital just about wiped me out because I didn’t have anything in my system and I was running on fumes.  There are a lot of stairs in and out of the train station as well as the subway tunnel and I was in need of a rest by the time we arrived at the radiology department.

Around 9:00am, I was called in and told to get changed into the hospital gown.  It is funny because the radiologist assistant looked at my mom first and then figured out it was for me.  Once in the x-ray room, I saw the assistant preparing the infamous gas pills and the barium.  I inquired, “Are those the gas pills?”.  He replied, “Yes”.  I started to dread what was about to happen next (remember the gas pill story from when I had my CT scan?).  Then the radiologist came in and introduced himself. I wish I remembered his name because he was a wonderful doctor.  After taking a brief medical history, I warned him that the barium may not go down because I have issues swallowing large amounts.  Also I learned that no stomach means nothing to expand with the gas, which means, no more gas pills!  I heard him tell the assistant to water down the barium 50/50.

The X-ray machine must have cost well over my net worth!  It had all the bells and whistles.  It had a moving platform that I stood on and a large drum in front of me which was the X-ray.  After some confusion between me and the x-ray assistant, I was able to safely get onto the platform and position myself into a toasting position with my full cup of barium.  The platform moved around and I was in position.  The radiologist  began his instructions, “take a small sip”.  I knew that a small sip wasn’t a problem, so down it went.  Next, “take a bigger sip”.  Again, I knew that this should be okay because I have done this with my water + orange juice.  Finally, “take a BIG sip”.  The look of concern must have shown on my face because he asked if I was feeling nauseous.  I started to imagine a game show host announcing, “will it go down?”.  This procedure was repeated again from a different angle.

Amazingly enough, I was able to complete the whole test without having any spit up issues.  Although, by the end of it I could feel things building up.

After the test was complete, the radiologist reviewed my results with me.  He showed me the imaging screen (and I wish I took a picture of it!).  Now the good/bad news.

Good news:

I’m not imagining anything! There is something wrong. There is an issue with my esophagus/jejuneum anastomosis (join between the two).   Why is this good news? Because now we know what is wrong and it can be fixed.  The alternative would have been that nothing is wrong and you are on your own.

Bad news:

I have a 5mm diameter space where food/liquid can pass through.  The radiologist had me dry swallow a few times with just saliva and I am sure that was to see if I could even swallow my saliva to determine the severity of the situation.  He told me that he was going to email my surgeon that day to let her know of the results.  He also hand wrote a note with the results on it to be hand delivered to her office this afternoon (she was only 5 floors above the department).  I started to realize that this is a semi-serious situation.

Here is an image of my x-ray that I requested for my blog from my surgeon’s assistant.  It’s not a great image but you can get an idea.  The red arrow points to the stricture.  Normally, the width should be the same as the esophagus, which is the darker tube above the arrow (around my spine).  I believe the dark cloud is the water or barium entering my small intestine.  Pretty cool, huh? This is why I failed to take a picture in the x-ray room, I was too amazed by the result.

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Once I hand delivered the note to my surgeon’s assistant, she immediately contacted the on-call physicians who work with my surgeon.  One of the physicians came down to talk to me and she said that referrals have been sent out to two doctors who can look at me.  Since I am only 6.75 weeks post op, they do not know if they can use the balloon to stretch the stricture (this is what is normally done in this case as it is common after a total gastrectomy).  What they will do is an endoscopy to look at the stricture from the inside and determine the next course of action.  This may be a ‘little stretch’, no stretch, or revision.

Once I heard the word revision, my mom and I were surprised.  I really don’t want to go back into surgery.  I will do a liquid diet if I need to until they can stretch it.  I’m willing to puree anything in order to get it down at this point.  I can’t afford any more weight loss. I don’t want to go back in the hospital.  I think the doctor had to tell us this option because they need to discuss all possible outcomes.  Mom and I believe that I will just do a more liquid diet until they are able to do the stretch.  I can still eat some things and I’m able to somewhat maintain my weight. Nobody get too worried.

So now I am waiting to hear from the doctors that will complete my upper endoscopy.  I am hoping to get in within the next week.  As much as I try to eat, I am losing around 1lb a week.  My total weight loss is now 21lbs post surgery.  This morning I was at 108lbs.  Thankfully, people still comment that I look great and that I don’t look sick.

Stay tuned for week 7 update.

P.S. At the end of my day there was a huge rainbow over my house. Yet another sign that everything is going to work out for the best.
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Post op week 6 – The slippery slope

I know I did a semi-update a couple days ago but there’s more!

I am now officially 6 weeks post op.  Yay!  This has been a fantastic week for me in terms of energy level and activity.  However, it’s a double edged sword that many post gastrectomy people experience.  For the past few days, I have had increased endurance but that combined with my eating issue has lead to a weight loss of two more pounds putting me at a whole 108lbs.  For the first time in my recovery, the weight loss has become a little frightening.  I think I am eating enough but then I wake up the next day and I have lost 1lb.  This was one of my biggest fears (besides the actual cancer) before surgery.    I know what the majority of you are thinking right now, “Can I give you some of my extra fat?”. My answer is, “Yes, you definitely can!!!!”  *Magic Wand and Poof*  If only it was that easy.

After a good talk with Brandon, we have decided that I am now going to track my daily caloric intake to make sure that I am eating/drinking enough.  Me being a goal setter, this was a great idea and I know I will strive to meet my goal!  I searched through my Samsung apps and conveniently found “S Health”, which is a built in app.  I can easily track my caloric intake, what time I ate at, as well as any additional comments.  The big part now is just remembering to document it.

Super excited about my new goals, I amped up my breakfast this morning by attempting to eat a slice of Dempster’s Ancient Grains toast with almond butter AND peanut butter (not Kraft because that is FILLED with sugar, already learned the hard way).  I was super happy I was able to eat it all.  However, the twenty minutes later….rapid heart rate, nausea, extreme fatigue.  I know how to recognize dumping now so I know it will pass after an hour or so.  So I just powered through it.  Strike 1 for that breakfast combo.

As I write this, I am snacking on 1/2 cup of Astro’s Plain Greek Yogurt 2x Protein (10% fat) mixed with Activia yogurt (but only 1/2 of a 100g cup because I also struck out on the full cup two weeks ago).  I mix the two to make the greek yogurt less thick.  It’s too difficult to eat on it’s own.

I have also decided that this weekend I am going to do my best to be more sedentary until I have my eating figured out.   It’s going to be tough but I need to gain back at least a pound.  I told myself before surgery that I hoped to stay above 110lbs.  Now I am telling myself I CANNOT fall below 105lbs.  I won’t lie, it’s tough.  Any Netflix suggestions? Books? Movies? Maybe I should get back into Minecraft….

In terms of pain management, I still continue to have incisional pulling and tightness. It is worse after eating or sitting for prolonged periods of time.  I usually look like Quasimoto for my first few steps after reminding myself to “STAND UP STRAIGHT”.  I still get occasional sharp pains deep in my abdominal wall. I attribute it to healing.  It usually feels like a running cramp and only lasts a split second.

When it comes to simple daily activities, I still can’t roll over in bed very well.  Walking up a small grade and a flight of stairs still makes my quads burn and my heart race.  I am now carrying my own purse.  I have driven for twenty-five minutes.  I wish I was allowed to lift! I know I keep saying it but it’s so true.

This is a semi side track but funny story. Because I am home during the day, I have encountered door-to-door solicitors on two separate occasions.  When I answer the door, I am usually greeted by a friendly gentleman who then asks, “Oh Hello, are your parents home?”  I then reply, “Oh, I’m the home owner”. They then have a very shocked and embarrassed look on their faces.  You know, the more I think of it, it’s not that bad of a problem.

Anyways, I will have a lot to follow up with over the next two weeks.  To cap it all off, here is a picture taken of me on the evening before my surgery.  image

This is me today.  It’s still shocking to me to see pictures of my ‘new’ self.  But, my incision looks bad ass.  Yes, I am going to rock that bikini when I am cleared to swim.

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Officially stomach cancer free!!

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Today I had my follow up with my surgeon and her team.  It was another trip to the big city.  I’ve had so many trips now I’ve now lost count.

My mom and I took the train in again.  Unfortunately, we missed the first train but I quickly learned that it’s too soon to run.   I must have made it about 20 meters and my ‘run’ was probably closer to a slow slow jog.  I have got a long way to go before I’m speeding around the baseball diamond again.

Once we arrived in Toronto, we picked up some lunch at a nearby shopping centre. Our lunch consisted of beef, white rice, and honey garlic chicken.  Did you know that for $9.50 you can feed two stomach-less people for not once but twice in a day AND have food still left over?  Awesome. I wish I took a picture of our meal.  We both had a good laugh about it.

Okay, so lets now get to the meat and potatoes of it all.  I met up with the medical student at 3:00pm.  I let her know about my swallowing concerns as well as other activity related questions.  She took a look at my incision and felt my abdomen.  She also listened to my abdomen with the stethoscope.  I also was very curious to learn about the operative and pathology report.

After I asked all my questions, she left to discuss it with my surgeon.  After about 30 minutes she returned with all the answers.

Bad news first:

No lifting for another 4 weeks – You’d be surprised about how much you lift during your daily activities (i.e. grocery bag, laundry basket, garbage bags, etc)
Don’t go back to the gym yet – Bummer!
Don’t start physiotherapy
You can swim but only floating allowed

I know my core is weak but I had been hoping that my lifting restrictions would be removed today and I could start to build strength in my core.  But I was warned that if I lift, I could create hernia(s) which would result in more surgeries down the road.  My abdominal wall is still healing.  I don’t want another abdominal surgery.  I have to keep reminding myself that I had a major surgery and not to push it.

I also have to get an upper GI x-ray and follow up with the team in two weeks to see if I have an esophageal stricture.  Apparently if you have a stricture at the esophageal-jejunum junction it may feel like food is stuck where I was reporting it (above the sternum) because you don’t feel lower down.  Who knew.  So this means two more trips to Toronto over the next two weeks. But now the good news…

NO MORE STOMACH CANCER!!!

The lymph nodes were clear. When mom and I heard this news there were high fives and big smiles all around. I’m still on cloud 9.

On the preliminary report (only part of my stomach analyzed) I had not one, not two, but 11 spots of cancer in my stomach. The exact wording was “Preliminary examination shows multiple mucosal signet ring carcinoma, at least 11 foci are present”.  I’m assuming there may be more because they aren’t done analyzing it but at this point, it doesn’t make a difference. I will post the final numbers when I receive them.

After my appointment, we dropped by to visit my genetic counselor who already knew this news. We all celebrated and high fived. She has saved another life. She told me that she was surprised I had so many tumors and that I had the 2nd most number of tumors she has seen to date.

Oh and I also ran into my pain management doctor as I was leaving the hospital. It was a glorious day!

So maybe I have food troubles now, maybe I continue to lose a little weight here and there. This is all chump change now knowing that I really did dodge a bullet and I am now stomach cancer free.

Now it’s lottery ticket time.