15 Weeks post up – Still got it!

So maybe it was like 15 weeks but whose counting?

So maybe it was like 15 weeks but whose counting?

As promised, here is my Friday back to work update!

I have worked a total of 8 hours this week.  Most people work this in one day.  I was happy to completed it over the course of two.  Wednesday was my official first day back to work and at the end of my 4 hour shift, I felt good.  There is never a dull moment at work and as predicted it was a busy day.  I arrived an hour and a half early to do some chart review and catch up with co-workers.

Before surgery and after, my biggest concern for work was finding time to eat throughout my day to minimize weight loss.  After working two four hour shifts, this is still my biggest challenge.  Both days, I had packed a lunch pail with snacks and both days, I ended up bringing it all back home with me. Since the stricture issue is still not fully resolved (more on this later), I have to watch how much I swallow at one time.  Right after I have the procedure, I am normally pretty good and can take a large bolus down; however, I am now four weeks post stretch and I can feel the dysphagia (problems swallowing) returning.  This results in slower eating which becomes an efficiency issue while working.  So far my greatest success has been sipping a calorie loaded smoothie throughout my shift.  I have a feeling my patients may start to question how I can eat so much but remain so thin.

My core is not as strong as it should be which is understandable.  Last week I tried to do a full push-up and failed miserably.  Not being a person who accepts failure lightly, I then tried to do a full plank.  Again, Plank 1: Rachel 0.  I finally settled with push-ups on my knees as well as tricep push-ups on my knees.  I was able to complete three.  Brandon and I had a good laugh.  It was a huge wake up call.  Prior to surgery, I was able to complete two sets of twenty full push ups.  Part of it is weakness and the other part of it is fear.  With every hard contraction I have an odd feeling that I am going to be torn apart which is then followed am I giving myself a hernia?  It’s hard to explain for those who have never had abdominal surgery before but it’s not a nice feeling but must happen to break all the adhesions formed over the past three months along my abdominal wall.  I know that I will get back to where I was, it will just take time.  I am impatient.

Other great news is that last week for the first time at a restaurant, I was able to finish my meal in one sitting!  It was half of a grilled cheese sandwich with a tomato puree soup.
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I didn’t experience any dumping after the meal as well which was another added bonus.  I figured with the bread it was risky but I survived.  However,  I avoided the crust because it was tough to swallow.  I was super full after the meal but I had a good twenty minute walk afterwards which helped with digestion.  Although I cannot eat fast, the size of my new ‘stomach’ is growing and over the past week, I have been amazed about the quantity of food I am able to eat in one sitting these days.  Yesterday, I was able to eat a small plate dinner plate of spaghetti (gluten free noddles) in thirty minutes.  Amazing!  Let the food keep coming!

Back on the stricture front, I have been having issues getting booked for my 4 week stretch.  Long story short, one email and two phone calls with no word of an appointment being booked.  I have called in back up and the medical assistant for my surgeon is now on it.  She has been pivotal throughout my recovery process and I am so happy she is advocating on my behalf.

So in summary, week 15 has been one of my best weeks yet.  I even did so well at work over the past week… I asked for more work.

 

No Stomach for Cancer Awareness Walk 2014

I drafted this post a few times and have debated whether to post it or not.  Mainly because I canvassed for Relay for life and so many generous people donated to the Canadian Cancer Society for my walk.  But when I think about how much No Stomach for Cancer has helped me, I hit the post button.  So here we go!

NSFC-2014-Walk

Okay okay, I know this is wayyy early but better early than never!

This November 1st (November is Stomach Cancer Awareness month) my family and friends will be walking in the No Stomach for Cancer Awareness walk.  This is a walk that happens around the world to raise awareness about stomach cancer.  My mom and I live without a stomach and my younger brother has yet to be tested.  It may seem far fetched but I am hoping that in the next 10-15 years an effective screening procedure can be developed in order to find early staged signet ring cells so people with CDH1 mutations no longer have to have their whole stomach removed prophylactically.

There was one study that identified possible common areas where early signet ring cells may start to develop.  I brought this article  to the attention of the specialist performing my upper endoscopy just after I tested positive for CDH1 mutation (click here for the story).  The study was not very strong however, the suggested areas to take biopsies lead to the identification of early staged signet ring cell carcinoma in my stomach.  If the cancer was not found so early, I may have delayed surgery which may have resulted in a worse outcome.  But let’s not go there.    I know I speak very positively living without a stomach, however, if screening was more effective, I would have kept my stomach for sure!

I know I canvassed for the Relay for Life earlier this year and I am ever so thankful for all your donations!!!  I am not someone who fundraises very often but this organization has helped me so much over the past year and I would love to give back. The money raised for this walk goes directly back into research for Stomach Cancer.  Just a few months ago No Stomach for Cancer awarded $100,000 for new research grants studying familial gastric cancer.  Amazing!

But besides the donation schpeel, I am still so thankful that for everyone who is following my blog.  I know that this blog has raised much awareness about hereditary diffuse gastric cancer syndrome and I am always surprised and grateful to hear when someone else is following my journey.  I have many followers now and I am so happy because I know that for every follower, one more person has learned about hereditary diffuse gastric cancer syndrome.  I have such a wonderful support network.

 

For those who would like to donate or join my team you can click on the link below:

Donate or join my team for the No Stomach for Cancer Awareness walk

For those of you who would like to walk or find a walk in your area – click here

But seriously, even better than donating, is just spreading the word about No Stomach for Cancer. You never know who it can help!

3.5 month update – The last piece and surviving the woods

The time has come!  I am heading back to work next week. Yahoo!  When you speak to friends and family you haven’t seen in a while, one of the first questions you are asked is, “how’s work?”.  Since I haven’t been working, the question that usually comes up is, “how’s recovery?”.  Although I don’t mind talking about my recovery to my friends and family, I am really looking forward to returning to a ‘normal’ life.  Most of my friends are working and if they are not, they are on maternity leave.  Being off work was necessary but I couldn’t help but feel like I was too young to be off work on sick leave for such a long time.  I often joked that I was enjoying retirement.

I will be returning to work on modified hours, working three evenings a week – four hours each.  My employer has been so supportive and they aren’t in any rush to push me back faster.  I am thankful that I work in rehabilitation and we deal with gradual return to work all the time with patients.  When I have returned to a full schedule, I should be working three 8 hour afternoon/evening shifts a week.  It will  be a challenge, but a challenge that I am ready and willing to accept!  I will post updates next week if I’m not exhausted. Haha

Last week, I went car camping for three days (car camping is where you have a car with you on the campsite so it’s not quite roughing it).    I ate more on this trip in one sitting then I have throughout my recovery so far.  The picture below is an example of one of my breakfasts.  It was half a slice of ham with an egg, a piece of cheese, and a tomato on top.  Tomatoes are great to pair with a lot of foods because they are moist and bring lots of flavour to whatever you are eating.

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Thirty minutes later, my plate was empty.  I was both was excited and amazed.  I have decided that I must push myself a little in terms of portion sizes so I can stretch out my new stomach.  It may leave me feeling uncomfortable for a short period of time but in the long run, it will be worth it and soon I should be up to a small dinner plate of food.  The food successes continued throughout the rest of the trip.  On the way home, I was able to eat half a sandwich on a kaiser bun with lettuce, tomato, and loaded with cold cut turkey.  I only had a minor carb crash but it was worth it.

Hot dog roasted on the campfire. So delicious.

Hot dog roasted on the campfire. So delicious.  Oh and I did also eat 1 marshmellow!

I have also started to drink my fluids closer to a meal than before.  I used to wait thirty to forty five minutes to consume any liquids pre or post meal but now I am getting more bold and drinking them as little as fifteen minutes after a meal.  I go slow to avoid a dump but so far so good.

I tell my mom that this prophylactic surgery is not for the weak.  It was a choice for both of us and we chose to believe that the alternative would have been far worse.  We chose to have our stomachs removed.  There was a 17% chance that we would have avoided death from stomach cancer in our lifetime.  I may have been able to keep my stomach for another 20 years like my mom but you never know what would have happened in those 20 years.  I have 11 good reasons why removing it now was a good idea. The mortality due to this surgery is very low but the morbidity (long term health consequences) is high.  The most obvious being weight loss (10-15%).  Others include permanent alterations in eating habits, and diarrhea, dumping syndrome to name a few.

But this recovery has been largely a mental game.  There are good days and bad days.  My recovery = majority of good mental days.  But, if you are not an optimistic person, I believe recovery would be VERY difficult and it would be very easy to fall into a deep depression.  I have managed to stay strong during this recovery but I cracked earlier this week and had a good cry at the dinner table and felt pretty good afterwards.  I don’t like to admit to crying but I have to show that I too am human and be an honest blogger.  Eating slowly, feeling full and looking at my dinner plate to see a lot of delicious food that I wanted to eat but couldn’t eat was the breaking point.  After a nice pep talk from Brandon, I realized that this is only temporary and in another three months I’ll be that much further ahead.

So in true Rachel spirit, my goals for September are:

1) Have stricture stretched out to at least 15-17mm by the end of the month (next stretch is due in the next two weeks.  I’m awaiting a phone call)

2) Be fully discharged or close to fully discharged when I follow up with my surgeon on the 24th of Sept.  Fully discharged is scary but means I am doing well enough to not been seen again.

3) Return to regular part time working hours

4) Do not drop below 105lbs

5) Go to an all you can eat buffet.  Just Kidding!!!

 

 

Back to school prep…I mean work

Two weeks of ‘vacation’ left.  I feel like a school kid getting prepared for back to school.  So far I have managed to getting a much needed hair cut and find some new work clothes. Thanks Value Village 50% off sales.

I decided to amp up my activity because I wanted to start getting in shape for work.  Doing my own exercises at home with a formal exercise plan has never been my forte.  The physio is the worst physio patient.  Remember when I wrote about doing some exercises for my core about 3-4 weeks post op? Do you remember me talking about them again? That lasted about a week.  Last week I brought out my 5lbs weights and started doing some light bicep curls, deltoid flys, and squats.  That also lasted 3 days.  I know what I need to do, but I am just so bad at doing it on my own.  I’m a group exercise class kind of person.

I decided to get into shape by doing more informal physical activity because I was failing at the formal route.  Conveniently, I acquired about 10 outdoor planters as well as a garden bench from a relative.  Since I have been spending a lot of time in our backyard this summer, I thought it would be nice to have a bench to go underneath our apple tree.  If I wanted a physical challenge, this would be it!  Lots of sanding, lifting, disassembling and assembling, and staining.  See the before picture below.

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I had planned to take it a few steps at a time.  Disassemble and sand on day one.  Day two would be painting the iron and slats.  Day three reassemble and urethane coat.  Three days and it would be done. I should have known better.  I’m not a take things slow person, I’m go big or go home.  I called up my mother in law who offered to help and we conquered the bench in one day.  It was a full day but we did it. At the end of the day both of us were wiped but the bench was beautiful.  See below.

We did it!

We did it!

I thought for sure that I would be bed ridden the next day from all the activity.  Miraculously, I was not!  So the next day, I spent the next day planting my planters, picking up fallen apples, tending to the vegetable garden and to top it all off, visiting my co-workers at work.  All and all a great couple of days!

When it comes to physical activity, this week ranks up there with what I used to do before surgery.  However, yesterday and this morning, I woke up with some incision pain which was reminder that I am still recovering.  I think all the activity broke more adhesions beneath the surface. This is a good thing.

I am building more muscle because I am doing more.  More muscle means burning more calories at rest. Burning more calories at rest means weight loss if you don’t eat enough.  The slippery slope has returned. I now sit at my lowest weight of 106lbs.  I am dangerously close to 105lbs.  Physically and mentally, I feel really good.  I thought I was eating enough. Clearly, I was not.  So now I must make a conscious effort to eat more often.  When I think of food, I should be eating food.  Not just thinking of food.  This is my biggest concern about returning to work.  My mom lost quite a bit of weight when she returned to work.

Speaking of which, I had sushi and sashimi for the first time post surgery on Thursday.

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After six pieces of sashimi, I was full.  I ended up taking the California rolls home for second lunch.  I loved sashimi before surgery.  Now, I have to chew it so much that the fish taste becomes over powering and it’s not the same experience.  I will have to stick to just one or two pieces instead of my usual.  This has also happened with other foods I have tried.  If you are curious to know what those foods are, try chewing your food in your mouth until it is a paste and then swallow it.  This is what I do on a daily basis and you will soon discover that bacon becomes even more awesome while bread becomes baby food.

Some foods that I have really been enjoying over the past week are:
Quiche
– Hot dogs without the bun with mustard
– Almond butter on a banana
– Home made granola bars from “Oh She Glows
– Sugarless jello with loads of lactose free whipped cream
Banana-Apple Shake - supplemented the Kefir for the yogurt
– Oatmeal with almond butter and home made chia seed jam mixed into it
– Watermelon
– Freshly sliced Tomato with any meat (helps keep it all moist)

Oh and when I spoke about the doughnut last week, I ate two bites of Brandon’s Krispy Kreme original glazed doughnut and felt fine. Yes! Another food win.  I celebrate all food wins because you never know what is going to happen fifteen minutes after you eat it.  Eating is still an adventure.

I received a phone call from my doctor that my recent blood work returned showing that I am now vitamin D deficient.  I now take 2,000IU of vitamin D in liquid form a day.  Since I started this earlier in the week, I have felt more energy.  The increase in energy may have been because I was pushing myself to do more or the vitamin D.  It doesn’t really matter though because the outcome has been so positive.  I have to return to the blood lab again this week to have more blood work completed for the high risk breast cancer centre in order to do the breast MRI in the fall.  I’m not looking forward to it because last time they had a hard time getting the blood and 1 hour later and grazing my median nerve, I was out of there.  I even tried to do my arm exercises before the draw to try make it easier.

Anyways, that just about sums up my week.  Next week I will be going camping for a few days with my parents and that will be a whole new eating experience.

Have a great weekend everybody!

 

 

 

 

 

 

Three months, 70th blog post and…fire in the hole!

We made it team! Three months!  I sure have come a long way over the past three months.  From not being able to move independently in bed, to re-teaching myself how to breath diaphragmatically, to being winded after two laps around the ward, to learning how to function with lifting restrictions and the never ending battle of ‘will it go down’. I sure am doing well.

As a tribute to my three month mark, I went back and re-read some of my older posts and was glad to have documented so much because it all seems like a blur now. Three months have passed so quickly.

For the past month, progress seemed slower but I think there has been a sharp increase over the past week. I am eating well and am more courageous to try new things. Last night, I had a small bowl of apple crisp, ate it too fast and then paid for it for the next 30 minutes. As long as I’m in the comfort of my own home, I am willing to experiment with riskier foods. I haven’t tried a doughnut yet but I’ve been eying the new Tim Horton’s Oreo doughnut. I may pay for it later (and those around me) but I bet a few bites will be worth it!

On Wednesday, Brandon and I went for my first hike post surgery and it was glorious. I live in a town that is known for its variety of waterfalls and trails. Our ‘short’ hike turned out to be an hour long as we took a few wrong turns. Earlier that day, I completed an hour worth of gardening and managed to clean up all the plants I had no recollection of planting. It was really great to have it all cleaned up.  After all the activity, I thought I would be feeling it the next day but I was fine! Another recovery win.

I look forward to going to sleep at night because I am always recharged when I awake in the mornings. I sleep like a log at night and feel full of energy in the mornings. As the day wares on, my energy meter starts to decrease and drops even quicker if I don’t eat frequently or the wrong foods. I mentioned a while back that I no longer require naps but after a morning’s worth of activity, I may take a nap here and there to recharge.  I am hoping that my endurance will continue to increase as I incorporate more physical activity into my day.  So far so good.  The more I have done, the better I have felt the morning after.

This next bit may be too much information but I feel it will be educational for those who have had a similar surgery. I started drinking Kefir after Steve mentioned it in his blog. I stopped for about a week for no reason and my farts became stink bombs. For a person who normally had odourless flatulence this was funny but also embarrassing. I also believe I started to develop steatorrhea and which is common with a total gastrectomy. I have since restarted adding kefir to my diet and my stool is a lot better. Kefir has a large concentration of active bacterial cultures that will keep the GI tract happy as well as those around you.

I also have had some thinning of my hair over the past week and I believe it is due to the significant changes my body has undergone.  I read that it can occur three to six months after a surgery but should return as your body adjusts.  It’s surprising how many places you can find long black hairs around our house.  Apologies to my friends in advance.

On Sept 2nd, I will speak with the local genetic counselor to start my breast cancer screens.  This includes annual mammograms as well as MRI.  Today, I spoke with a nurse at the high risk breast cancer centre and learned that I could have an appointment as early as late September or October.  I hope they do not find anything but whenever you start screening there is always slight worry that something may be there.  The youngest case of breast cancer in my pedigree is 53 years old so I feel like I should be in the clear for at least another 30 years and hopefully for the rest of my life!

I think later this week, I will post a before and after photo of myself to commemorate a new me.  I am still not used to my new body and it is still an adjustment.  I’ll also include incisional shots for those who are curious about what it looks like at the three month mark.

So three months in I am feeling so much better.  I can only imagine what the next three months will bring!

Post op week 11 – 12mm and 8 more to go!

I missed doing my usual weekly Friday post again! This is a good thing though. I noticed it’s a trend among most CDH1 bloggers around this time and I now have a better understanding of why this may occur.

I have been busy living a new normal life! Yahoo! Now that my restrictions have been lifted and I can do whatever I’m able to do.  At this point, I feel it’s safe to say now that I am now starting to figure out my new normal.

Last week I returned to the big city to have another dilation.  I have had some questions on what exactly is being done and here is a picture to help further understanding.

It is basically an endoscopy with an additional step.  First, an IV line is inserted where the anesthetic will be administered.  Then I am brought into a room where I am attached to a blood pressure monitor as well as an O2 saturation monitor.  A freezing agent is sprayed into my mouth twice to numb my throat and then I’m put out.  The physician always apologizes for the taste of the spray because it IS disgusting.  This time I pretended I was drinking a delicious glass of orange juice and it wasn’t as bad.  During this time, the surgeon looks at the stricture with the endoscope and determines how much to dilate.  Next, a balloon is inserted and the stricture is stretched.  The specialist has to be careful not to dilate too much because this could result in perforation and we all know I don’t want that!  When I wake up, I am in a recovery room and I wait there until the physician has had a chance to debrief me on what occurred while I was asleep.  The nurses remove the IV line and I receive some nice juice.  The actual procedure takes 30 minutes but I am usually there for two hours once they have put me under because it takes about 20 minutes to prep before the procedure (IV line, take history, etc).

I mentioned last post that I would be going with Brandon but I actually ended up going with my brother in law.  This is the worst part about the whole procedure because I need an escort for the procedure and they could end up waiting anywhere between 2-5 hours depending if the clinic is running on time or not.  I can’t help but feel bad for whoever is waiting with me.  Thankfully, this time the two patients booked before me did not show up.  I was scheduled for 9am and I went in promptly at 9am and we were out of there by 11am.  The specialist was able to dilate my stricture from 8mm to 12mm (note: last time they went from ‘pin hole’ to 10mm).  I asked how wide it should be and he said, “20mm”.  So I’m over halfway there!  I figure one to two more times should do it and then I am going to will it to stay open.  Once I’m fully dilated, I’m assuming I also will no longer need to follow up with my surgeon and all my trips to the big city for medical appointments will be over for a while.  This will be nice.

The first time I had the dilation, I didn’t feel any after effects but this time I had some discomfort.  I would feel fine and then all of a sudden I would feel this pulling deep inside my body right where the stretch occurred and a split second of nausea.  I think my esophagus was rebelling.  The frequency of these spasms decreased and by Thursday I was fine.

Tuesday was also our two year wedding anniversary and Brandon took me out to Quatrefoil. This is a well known fine French dining restaurant located in our little town.  People come from the big city down to our little town to this restaurant.  I was happy to have just had the dilation because I was able to eat!  I ordered a soup for my meal and had a bite of every course that Brandon ordered.  I wish I had taken photos of our meals because it was presented beautifully.  Blogging fail.  Since only 50% of us had a stomach, our bill was only 50% of what it could have been.  Another win for Stomachless Rachel.

In terms of activity,  I am able to do all of my daily activities of living without much difficulty.  Sometimes I will feel some incisional discomfort after an activity, but I figure I’m just breaking more scarred tissue because it doesn’t last long and I always seem to feel better as the day goes on.  If I sit for too long, I always have pulling immediately after rising and need to stretch out a little before the pulling subsides.  I tried to jog up my driveway one day and was able to do it but it wasn’t pretty.  Tending to our vegetable garden has been a great rehabilitation activity for me as it requires about fifteen minutes of bending, lifting, and reaching to harvest all our veggies.  Speaking of rehabilitation, I have other exciting news.

Our daily harvest

Our daily harvest

I will be returning to work beginning of September!!  It has been a long three months but I am really looking forward to heading back.  This is the last piece to my new normal life.  This means, I also need to start to do some formal rehab to build up my endurance so I am more prepared for the physical demands of my job.  I am concerned about exercising and burning calories but I know that I need to get back into shape to avoid injury in the future.  I currently sit at 108lbs.  My weight continues to fluctuate.

I have been fortunate to have not experienced the full dumping syndrome yet.  If I eat the wrong food the first symptom I experience is excessive thirst.  This is followed by the furnace, then fatigue and sometimes nausea.  Luckily it all wears off within 20-30 minutes.  For some reason, if I move around more during this time, it subsides quicker which doesn’t make any physiological sense but you do what you’ve got to do.  If I eat too much, I feel a lot of discomfort in my intestines which I attribute to stretching.  In this case, I use my hand to rub over my ‘new stomach’ and I think it helps with gastrointestinal motility.

I have been careful about my sugar intake and have been slowly gaining more courage to try more sweet treats.  This week I started eating a lindt dark chocolate bar and am able to tolerate one square at a time.  I am still limiting my carb intake but I have started to re-introduce bread purchased at our local farmers market.  I look for the bread with the most ‘stuff’  in it and it has been going well.  Last week I purchased a whole grain rye bread with light sourdough and this week a seven grain sourdough loaf.  I try incorporate something with protein on top of the bread (almond butter, cheese, liverwurst). If I start to carb crash after, I just eat some fruit and I’m back in the game.

I haven’t tried alcohol yet but I’m thinking I will soon.  Recently, I drank a small black iced coffee and felt pretty loopy fifteen minutes after finishing it.  I wasn’t a big coffee or alcohol consumer before surgery but I did enjoy them once and a while.  I can only imagine what the alcohol will bring to the table.  My friends are also looking forward to it.

So I’m approaching the three month mark.  Each month is easier than the one before.  At this end of this month I will having another dilation.  Sometime this month, I need to go get my routine blood work and over the next three weeks I am going to work on getting myself back into shape.  I do miss my life with a stomach but I am learning a new life without a stomach and each day brings a new adventure.

 

Post op week 10 – It’s on like Donkey Kong!

As I sit here eating my 4th ‘meal’ of the day, I cannot believe how fast time has gone by!  It’s already August 1st.  I have been a person with one less organ for ten weeks.  You wouldn’t really know that I dodged the stomach cancer bullet if you saw me walking down the street though.  Well, unless I was wearing a bikini.  And yes, I still plan on rocking that bikini.

During the beginning of the week, I had extreme fatigue.  I am  not sure what caused it but it felt like I hadn’t slept in days.  I have a feeling it was just fatigue that was building from last week activities that had finally caught up to me.  Since it wasn’t getting much better, I took it super easy yesterday and today I feel a lot better.  I guess my body was forcing me to take it easy.  I’m still working on figuring out my new normal.

I’ve also had a harder time eating this week because of the stricture issue.  See below for a better image (I was able to get a hold of my actual X-ray from July 8th).

Barium Swallow - July 8, 2014.  Stricture less than 5mm.  Width of join should be as wide as espohagus.

Barium Swallow – July 8, 2014. Stricture less than 5mm. Width of join should be as wide as esophagus.

Unfortunately, it is worsening each day and at this point, I feel like I’m almost back to square one.  The gurgle after swallowing has returned and I’m back to making trips to the washroom.  Boo!  But, there is light at the end of this tunnel!

On Wednesday, I went to follow-up with my surgeon.  After discussing my eating issue and having issue getting booked for my next dilation they told me that I should be receiving a call from the office for my appointment on Tuesday or Wednesday.  It was glorious news.  It really stinks when you are able to eat for two weeks and then the problem starts to slowly return and there is nothing you can do about it.  It’s like giving a kid a double scooped ice cream cone only to have it fall on the ground immediately after the first lick.  We’ve all been there.  My surgeon let me know that I shouldn’t be surprised if I have to go back 5-6x to have it dilated.  She said that eventually it will stay open but she’s not sure what causes it to stay open.  I am going to will it to stay open after it’s dilated.

We also discussed my restrictions (because I bring it up EVERY time).  I am an impatient patient.  I am now cleared of ALL restrictions.

It’s on like Donkey Kong.  Look out world here I come!

I left that office feeling like a million dollars. That is one step closer to returning to my new normal.  On the train ride home, I started planning my gym routine.

Since Wednesday, I have been doing some minor gardening in our front garden because there are some plants in there that I definitely did not plant.  Even though I only last half an hour, it was great to get out and clean it all up.  I also went grocery shopping and carried a basket around the store to build up some arm strength.  About 10 minutes in, I realized this was a bad idea and ended up kicking it along the floor.  I also have a lot less incisional pulling which I believe is from general healing as well as breaking up the adhesions from challenging my body to move in different ways.

I received the call today that I will be going in on Tuesday for my next dilation.  Brandon is going to take the day off to take me to my appointment since I need to have an escort.  It will be a nice way to spend our two year wedding anniversary together.  At least I will be able to eat a celebratory dinner!

On that note, I want to send a quick shout out to my friend Blair who suggested a great idea for eating cereal.  Just separate the milk and cereal.  Now why didn’t I think of that?!?

Happy Civic long weekend for all you Ontario people out there!  Everything is coming up Rachel.

image

I still feel hungry?!?!

keep-calm-and-i-m-hungry-3

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