Don’t worry, it gets better

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

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

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

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

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

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

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

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

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

 

For the love of Oatmeal

I’m not sure what I would do without oatmeal.  Prior to surgery, I rarely ate it I was a cereal and milk kind of person.  It was fast and easy.  Now is a whole different story.  Oatmeal is one of the easiest things for me to digest and often a go to food.

I’ve learned more about oatmeal in the last 6 months than I had ever imagined learning about.  Oatmeal research? Sure why not.  Did you know that oatmeal starts as a groat?  If it’s cut smaller it’s steel cut oats and if those are pressed they are rolled oats? The thinner the rolled oat the faster it will cook.  So Quaker quick oats are thin and instant oats are even thinner.

Prior to surgery I would take my Quaker quick oats – pour some in a bowl with milk and microwave it.  After it was done, I’d add brown sugar and it’s done! Looking back, I can now see that I was missing out on a lot!

A few blogs ago, I mentioned savoury oatmeal.  Recently, I’ve discovered overnight oatmeal.  This has been a whole new ball game. Basically you combine a whole bunch of ingredients the night before and then in the morning add a little bit of fruit and you are good to go.  There are a lot of recipes out there but I have been  using one with 1/2 cup of oatmeal, 1.25 cups of milk (lactose free), 1/4 cup of chia seed, and 1 mashed banana.  I leave it overnight and in the morning I put hemp seeds and blueberries on top.  I eat half in the morning and eat the other half as a snack later in the day.

I also have been eating oatmeal with a soft boiled egg on top with a layer of shredded cheese underneath.  I found the recipe online as well.  I never considered putting an egg on top of oatmeal before.

Oatmeal is also great as an ingredient in smoothies as well as granola bars.

For people who have had a gastrectomy, oatmeal is great because it has fiber in it and gelling properties for those who may have issues with soft stool.  It also slows transition of food through the gut.   I can eat a lot of it and still feel good afterwards.  Thank goodness for oatmeal!

 

First Stomachless Snow Day!

The snow day today reminded me of where I was at this time last year.  Very stressed about finding out I was CDH1 positive and trying to determine the ‘best’ time to have my stomach removed.  I had my repeat endoscopy with biopsy a few weeks prior and was awaiting the result.  On Feb 5, 2014 (another snow day) my mom and I braced a snow storm to find out my result of my repeat endoscopy.  That day I was told that there was microscopic cancer cells in my stomach.  It was shocking news but weirdly enough, a day of huge relief.  I had to break the news to Brandon as he was snow blowing our driveway. Not very fun.

Fast forward to 1 year later.  I don’t think of having Hereditary Gastric Cancer Syndrome on a daily basis.  Since having my stomach removed, I rarely think about my increased risk for the other cancers (breast and colon).   There are a few things that do remind me that I have the mutation though.  Whenever I have to go for screening and when Brandon and I bring up the child discussion.  A couple of weeks ago I was screened for lobular breast cancer and my MRI and mammogram came back clear.  Phewf!  I will be having these annually from now on.  In March, I will be screened for colon cancer and you can bet that I am so excited for that procedure.  Detox here I come….haha.

Last week, I visited my family doctor for my overdue monthly check up and I mentioned the fatigue I was feeling.  I like to blame fatigue on nutritional deficiencies which may be part of the issue (I mean my body IS still adjusting from the weight loss); however, she identified that the fatigue is more likely from going too hard too fast.  She also re-iterated that I need to slow down sometimes because the day the stricture was fully dilated was the day I started to fully recover from the surgery.  It was both upsetting and encouraging to hear this advice. Encouraging because it means that where I’m at isn’t really my new normal and upsetting that I am way behind others.

After the snow today, I decided to shovel the driveway.  This is something that I usually enjoy doing as it is good exercise and give me an excuse to get some fresh air.  After shoveling the walk my arms were tired.  It was very surprising because I thought I was more in shape.  After shoveling 1/8th of the driveway, I was feeling a bit dizzy and out of breath.   So two quick calls to my brother (thanks Chris!), I had the snow blower going and I was off to the races.  But this was no walk in the park either.  Half of my driveway is down sloping which meant pushing it up the driveway multiple times.   In the end, I managed to do the whole driveway as well as learn how to use our snow blower. No Stomach, No Problem.

I am amazed about how frequently I eat and how little weight I gain.  I always feel bad saying this but then I remember that I live without my stomach and I would have loved to keep it if it hadn’t tried to kill me.  Again, Rachel 1: Stomach 0.  For the first time last week, I actually forgot to eat lunch.  The feelings of being hungry are very prevalent some days, and almost absent others.  I continue to eat Kind Bars as a quick go-to snack.  I also continually snack on nuts.  Sometimes these can get boring.  Thankfully, my co-worker shared this recipe with me for no bake protein bars and they are delicious and full of calories!

Get the recipe here

I supplemented the coconut with slivered almonds (more protein!) and used just a small amount of dark chocolate chips.  I also added 1/3 cup of “raw meal” protein powder.  I also needed a little more peanut butter than what was listed because of the raw meal.  I will warn my readers that these are highly addicting.

In terms of my body image issues  I have learned to accept my body and I actually really like it.  Now when I look at old pictures of myself, I seem a lot bigger.  It’s because I’m used to myself now.  People say that I look fantastic and now I can accept it when they tell me.  Telling myself that I looked good even when I didn’t believe it, has come to fruition.

Last post, I talked about the 90:10 rule.  Another thing I have learned without a stomach is that everyone has a story. Most of my patients view me as a small but mighty physiotherapist.  But few of them know why I have a thin figure.  On the outside, you may look great. But on the inside, everyone has a story.  Now when I see people in the group exercise classes at the gym, I start to wonder, what’s their story?

For those considering this surgery, living without a stomach is not a hard life.   It’s just a different life, which keeps everything more exciting.

The 90:10 Rule

As I sit here in my pajamas (yes, I have been in my pajamas all day), I realize that I need to remind myself at times that I still am recovering.  I don’t need to dwell on it but a reminder every so often is a good thing.

Let’s just do a quick recap.  I returned to work in September.  Super excited. Go big or go home attitude back.  Ramping up my work hours each week.  After a few weeks, my weight began to plummet and I had to cut back in October.  It was a hard thing to accept but necessary.  Since then, I have maintained a work schedule of about 15 hours a week until this month.  During the month of December, I returned to the gym a few times a week with minimal issues.  I was increasing my activity, eating well, feeling well, and maintaining weight.

End of December, my job duties changed as I was now managing two physio clinics as well as working my usual clinical hours.  I continued working out at the gym and even managed to attend 3x a week for a week.  The first  week of January was running really well.  As the weeks progressed, I was more and more fatigued each night.  But I didn’t want it to affect my life so I just kept pushing through it.  I figured it would pass. On a side note: a funny thing about working is that I feel energized by the people around me and as well as my patients so I don’t feel the fatigue for the most part.  I’m invincible.  It’s when the adrenaline rush slows down and I relax, I realize that I am actually pretty tired.

So after going big for the past few weeks, I finally decided it was time to spend time to relax and decrease my activity for the next few days. I think it really hit home when I looked in the mirror and noticed I was looking quiet pale.  Resting was a tough thing to swallow (pun intended!) but I actually feel human again.  This was a reminder that I’m not quiet there yet.  Yet being the key word.

The fatigue I experience is unlike any fatigue I have felt before.  When it’s bad, it feels like you have pulled an all nighter for two nights in a row.  Your eyes burn and every morning when you wake up, it feels like your head is still in the clouds.  You can push through it and function normally but it just seems to build up if you don’t rest.

It is frustrating to feel like you can do everything but your body can’t keep up.  But I cannot dwell on this fact because that won’t get me anywhere.  So this is where the mental part comes in.  I watched a good video by Dr. Mike Evans discussed the 90:10 rule in one of his educational videos about managing stress. He said that 10% of our life is what happens to us and 90% is how we respond.   I am a firm believer in this statement and it really hit home as it relates to everything CDH1 for me.

Even though I am not physically as strong as I was prior to surgery, I can say with 100% confidence that I am more mentally strong than I have ever been.  I was a positive person before surgery and I can say I am even more positive than I was prior to surgery.   I choose to respond positively to most things that have happened to me over the past 8.5 months and in turn, everything has followed suit.  The big things that used to stress me out in the past are now just little things.  I found a t-shirt at Nike that read “Don’t worry, I got this” and I had to buy it.  It just about sums up how I have been living my life since surgery.

So tomorrow I will continue with the CDH1 saga. I am starting my screening for breast cancer (mammogram and MRI) because I’m high risk.  Screening is always a little scary.  But don’t worry, I got this.

Goodbye 2014, Hello 2015!

It’s been over two weeks since I last made a post and I have a feeling people are starting to wonder where I’ve been.  Good news. I’m still here!

A while ago, I mentioned that I saw a common trend in CDH1 bloggers.  When people start to do well, they slow down blogging because they are too busy living their regular lives.  Well this has happened to me as well and I’m super happy about it.  But more on that later.  First I wanted to do a big food and activity update since it’s been a while since I’ve really gotten into the nitty gritty of it all.  This is more for people who have had this type of surgery but educational for others as well.

Food update:

Being the holiday season, it only seems appropriate to start this post discussing food.  I eat frequent small portions throughout the day.  I have learned that smaller portions chewed well are the way to go.  I make sure to chew carbohydrates REALLY well since they are harder to digest.  I could stuff myself with calories to the point of feeling uncomfortable, but then I’m left feeling a lot of pain and agony for the next 1/2- 1 1/2 hours. Not worth it!

I will eat a bite or two of bread but most of the time I avoid bread.  When I do have some bread, it’s always some sort of brown bread (rye, whole wheat, pumpernickle) and ALWAYS combined with protein.  Even with my protein rule, I avoid white bread because it always makes me feel ill afterwards.  Goodbye, Wonderbread.

Thankfully, I am able to tolerate foods higher in sugar these days.  As long as I eat a load of protein before the meal, I seem to be fine.  I was able to eat a whole piece of tiramasu after Christmas dinner.   I paced myself over a period of about 20-30 minutes but I was fine afterwards.  This has come with a heafty price though.  More sugar = return of acne!  I had heard about this before but sugar is definitively a pro-inflammatory food.

One of my favourite things to eat these days is savoury oatmeal.  To make it you combine 1/3 cup of oatmeal, 1/4 cup of red lentils, 1 1/2 cup of chicken broth. Then simmer it all in a saucepan for about 10-12 minutes. Add hummus or salsa on top.  I like eating it for breakfast, lunch, or even a snack.  Another one of my favourite things to eat is cheesy eggs.  All it is is scrambled eggs with cheese mixed in.  Fast, easy, delicious and calorie loaded.

I can eat a wide variety of fruit (i.e. oranges, apples, watermelon).  I find fruit is better for satisfying your sugar cravings because not only is it better for you, it is also hydrating.  I continue to struggle with drinking enough liquid in a day.  I’ll be lucky if I consume greater than 500mL of liquid a day.  I’m often thirsty because I still usually choose food over liquid.

Speaking of liquid, I now have an easier time drinking straight water than before.  I’d prefer to mix it with something but I’m able to drink it if I’ve got nothing to mix into it.  It’s also better if it’s chilled with a lot of ice.  I also enjoy drinking cold tea.  It’s something I had a lot of when I was traveling in Japan and recently started drinking it again.

But probably one of the most interesting beverages to consume without a stomach is alcohol and caffeine. I recently learned that a 5 oz glass of wine consumed on an empty system can be quiet the experience.  Same goes with a cup of coffee.  I describe it like the alcohol or coffee is injected straight to your bloodstream.  I guess it is doing just that since there is no longer a reservoir with a sphincter to regulate the passage of liquids into your small intestine.

Activity update

As mentioned earlier, I have returned to the gym! I have been able to participate in a variety of group exercise classes twice a week at a lower level.  I bring juice water with me to each of the classes to ensure that I stay hydrated but also to prevent my blood sugar from plummeting.  During the class, I have to ensure that I don’t go all out like I used to because that results in near passing out.  Every class I have attended to this point, I have felt light headed at least 5-10x during the class and needed to back off.  It’s funny how it’s not my cardio or muscular fatigue that does it but my entire system throwing in the towel.

My mom and I participate in these group exercise classes together.   It’s funny for us to look in the mirrors at the gym and see our body shapes.  We are skinny.  We are toned.  We are both out of shape but no one would know.  That’s one of the pluses of having a total gastrectomy.  You are more lean than the average person because your body uses your fat for energy.   Last Friday during the step class I looked around the room and thought to myself, “who would have thought two people without stomachs would ever be doing step class?”.  A sight I would have never considered seeing.

I was concerned about my weight dropping during this time; however, with the combination of holiday goodies and holiday eating, I have maintained.  I am around 107lbs these days and still going strong.

My job

There was a job opening to manage the clinic where I work.  I am currently working part time but my long term plan (even before surgery) was to eventually treat part time as well as work administratively part time.  Since I am on the upswing, I decided to apply for this position.  It was a new challenge that I was willing to accept.  Just before Christmas, I received word that I got the position.  Currently, I am managing a team of around 18 people as well as working about fifteen clinical hours.

Overall

Last post I ended by stating:

“I used to count down the weeks closer to one year post surgery because I think I was waiting for something magical to happen and suddenly, I would be back to normal.  Back to the way I was at this time last year.  But this is not true.  I won’t be back to the way I was last year.  I’m going to be better.”

The moment I made this decision so many great things happened in my life.  It could not have been more fitting.

I can’t talk about 2014 out loud because I always get overly emotional.  It was a year full of life lessons, challenges, and a lot of personal growth.  It was an important year for me but I am so ready to say goodbye.

Happy New Year to everybody.  Let 2015 bring on many new exciting adventures.  Thank you all for following my blog.

 

 

Seven month update – I’m not “sick” anymore

I had to count back the weeks in order to figure out that I’m now at seven months.  Seven months and one week to be exact.  This is a good thing though.

At last Sunday’s family dinner, I was discussing with my family about how I am waiting to figure out what I’m doing with my life until I hit my new normal.  Then my mom said, “Maybe this is your new normal” and that got me thinking.

Right after surgery, I was all about getting better as fast as I could so I could return to all my activities of daily living as soon as possible.  In my mind, I would be returning to work after one month or two of recovery and back to the gym by month two for sure.  Obviously, this was not the case due to some post operative complications.  My doctors as well as my family and friends kept reminding me that I did just have a major surgery and not to push too hard.  Recovery can take a year.  Over time, my mindset changed from being really gung-ho to I’m not at 100% and need to take it slow.  I believe I started to feel like I had a disability because I couldn’t do what I wanted to do.

During my third month of recovery, I returned to work part time and although I was already a happy person, I became a really happy person.  I had always known that returning to work was good for your mind but now I had personal proof.  I didn’t realize how much I loved my job until I went back.  I felt a lot better all around.  Unfortunately, I could not work as much as I had hoped for and the feelings of having a disability continued to linger.

After my mom mentioned that I may be at my new normal, I had a huge mental shift.  I can’t be disabled for the rest of my life!  I am not going to let not having a stomach be a “disability”.  It will be more of an ability. An ability to go above and beyond.  An ability to show people that you can still function without a stomach and not to feel sorry for me.  My story is one of success not sadness.

Completing the Santa run was a challenge but proof that I can still do the physical activities (within reason) that I was able to do before surgery.  I started back to the gym last week and have been to two group exercise classes (yoga and a light low impact class).  I have been sore every single day of this week due to delayed onset muscle soreness but that’s okay.

I used to count down the weeks closer to one year post surgery because I think I was waiting for something magical to happen and suddenly, I would be back to normal.  Back to the way I was at this time last year.  But this is not true.  I won’t be back to the way I was last year.  I’m going to be better.

5km without a stomach

Good news!  I didn’t die from doing the 5km Santa Jingle.  There were some shady moments, but I made it, and to this day my body lives to tell the tale.

As a physiotherapist, I would never recommend doing what I did to any of my patients…but of course, I did it anyways.  Brandon and I have participated in this 5km run/walk for the past three years.  Everyone is required to dress up in a race issued Santa Claus outfit and run/walk 5km.  It is a very scenic race as it takes place along Hamilton’s Bayfront Park.   When I registered at the beginning of November, I had planned to run/walk the race.  In my mind, walking would be the best and safest option since I did not train for this race.

I should have known better.  I am a competitive person and watching everyone run past me at the start of the race was not in the cards.  When the gun went off I started jogging at an easy pace.  So far so good.  Then my muscles started to get tired – quads, hamstrings, and glutes.  I started to feel a little short of breath.  I thought to myself, “I must be at least 2 km by now” and then I ran past the 1km sign.  Good times.

I told myself I would try to run at least half of the race but around the 1.5km mark I had to walk for a little because I was starting to feel lightheaded.  After about 30 seconds, I started to run again.  I ended up doing the run in a run/walk format.

At the end of the race, I was eager to check my results.  I managed to finish the race in 34 minutes and 48 seconds.  I placed 18th out of 28 people in my age category.  That means I beat over half of the people in the 30-34 age category.  I know that this race isn’t very competitive but it’s a fun one.    I’m not sure where I placed overall yet as the final results haven’t been posted.  I’m hoping I’m in the top half.

Last year, I ran the race in 29 minutes and managed to place 2nd for my age category.  But there’s no sense in comparing my times to last year.  This year’s circumstances were significantly different.  I’m just happy I beat someone.  However, next year it sure would be awesome to place in the top three for my age category….without a stomach!

Okay hot Epsom salts bath time.

Still smiling!

Food for thought, literally!

Since I’m still sore from the Santa run, I thought what better thing to do today than blog!  But more on the race later. First let’s talk food.  The holiday season is usually associated with family, friends and especially good eats!  However, over the past week, I have found eating more of a chore than for enjoyment.

As most North American’s are aware last Friday was Black Friday.  Canada has started to jump on this bandwagon and there were deals to be found as well.  I was off work last Friday and since I’m all about getting a good deal, I definitely was at the mall at 8:30am looking for a bargain.  My mother-in-law and I visited the mall, the local supplement store (Popeye’s), and of course, Value Village.  After the day was done we had shopped a solid seven hours.

I knew it was going to be a big day so I packed my trusty lunch pail with snacks.  Included in my lunch pail was half a whole wheat tortilla with peanut butter and apple slices, a kind bar, and an apple.  This is a good idea in theory; however, to be an efficient shopper, you need two hands!  So I found myself eating bites of my food while driving between locations.  I managed to finish all of my food by the end of the trip but realized that we probably should have stopped for lunch somewhere in there.  Missed meal. Not good.

Missed meals didn’t matter before surgery.  Missed meals really matter now.  I believe my metabolism is just as fast as it was prior to surgery and this is why I have been having such a difficult time maintaining my weight (besides the stricture, but that’s old news now!).  My mom always says, “food is medicine” and this is so true.  I have to think about eating every two-three hours or I end up losing weight.  Fifty percent of the time I don’t even feel like eating but I know I need to in order to stay healthy.

It’s difficult to discuss weight gain in a society that is focused around weight loss.  I know people struggle with weight loss and I sometimes feel bad for complaining about it.  However, I would take my stomach back in a flash if it wasn’t trying to kill me.  Living without a stomach is not an easy path but a necessary one.  Not everyday is hearts and rainbows, but you have to keep your head high, stay strong, and continue to celebrate any achievement throughout your recovery, big or small.

Which brings me to another recovery achievement.  I actually baked and ate home made cookies this week and it has been GLORIOUS!!  Mom, her friend, and I baked four dozen cookies last Tuesday.  Actually, I just watched most of it happen but I was able to reap the benefits.  I ate one of every type of cookie over a three hour period and was fine.  I was so happy, I decided to bake flourless peanut butter oatmeal cookies on Saturday.  I searched the internet for a while before I found this recipe.  I was looking for a cookie recipe that was low in sugar, higher in protein and other foods that slow transition through the gut.  **note, I used my homemade roasted almond butter instead of peanut butter because I ran out of peanut butter**

After they were completed, I ate one….waited….waited….20 minutes passed….success! No issues.  I have been talking about them every day since Saturday.  I don’t know if I would recommend this recipe to those who are early out of surgery but I think at the three month mark it may be safe.  I also wouldn’t recommend eating more than one at a time.

So although eating may feel like a chore sometimes, I must continue to focus on the positives.  I can now eat cookies and not worry about the extra calories.

Dessert anyone?

6.75 month update – There’s more to massage therapy than you may think!

For the past couple of months, I have been going to massage therapy once a week in order to  maintain mobility and prevent workplace overuse injury.   However, recently, we decided to do some work on my scarred tissue surrounding my incision.

I have always felt pulling around the incision.  It was most obvious with the valsalva manouver (increasing intra-abdominal pressure).  For example, sneezing was one of the worst things I could do.  I figured it was just adhesions built up around the surgical site and lack of mobility post surgery.  I started doing cross frictions (rubbing around the incision gently) once the incision had fully closed.  This helped to a degree but I still felt the pulling around the incision.

Once a week for the past three weeks, I have been getting about 10-15 minutes of work on my incision and the surrounding tissue.  Initially, the sensation was more of a ‘tearing’ feeling that needed to occur.  I describe it to my own patients as a “good but bad feeling”.  The week following the first treatment, my incision was pretty itchy.  This was a good sign though because it demonstrates that healing is occurring.  This week, I have noticed a large improvement in my overall spinal mobility.  I have increased extension as well as side bending range of motion.  There are times where I don’t even noticed my incisional site.

Besides the range of motion improvement, the scar appears remarkably better.  It is less red and has flattened out.  There is less of a ‘hard’ feeling along the incision.  Both my registered massage therapist and I are really excited about how fast this change has occurred.  The change has been so significant, we have started to document the progress.  Unfortunately, we did not take one before we started this process because we didn’t realize how fast the change would occur.  I have always known about wound healing (did you know that physiotherapist work with wounds as well?).  But it’s always nice when someone can work on it for you, right?

Besides my massage therapy update, I have one other big piece of news.  I decided to start taking vitamin B12 sublingually.  I wanted to take it prior to having my monthly blood work to see if it was a feasible option for me.  Some people can absorb it this way post gastrectomy and others require monthly injections.

**Aside: Vitamin B12 pairs with an intrinsic factor in the stomach allowing it to be absorbed through the small intestine into your blood stream.  Without this factor, very little B12 is actually absorbed into the bloodstream.  Taking it sublingually bypasses the intestinal route and is absorbed through the salivary glands into your bloodstream.  **

Last week, I went for my monthly blood work and my B12 was actually higher than it was back in June!  My doctor was puzzled why this was the case because I failed to mention I started taking it sublingually.  Anyways, this is fantastic news and I am glad that I will have one less doctors appointment to book and more autonomy.  I was so excited, I had to call my mom and give her the update.  She currently takes it by injection but maybe now she will have another option.  Who likes injections anyways?

Next week my gym membership is activated and I am more than excited to return.  Also, Sunday I am participating in the “Santa Jingle” which Brandon and I have been doing annually for the past three years.  It is a 5km run/walk dressed in a Santa Claus costume.  Initially, I wanted to run it but I know that would not be the best idea given that I am not fit to do so. However, due to my competitive nature, I am going to try run/walk it and beat at least one other person in my age category.  It’s nice to say you beat someone, but even nicer to say you did it without a stomach!! Joking.

Looking good. Feeling good.  That’s my 6.75 month update.

Had to spread the word since it’s stomach cancer awareness month. For more information visit: http://www.nostomachforcancer.org

 

 

 

Hindsight 20/20

Four dilations later, I am feeling much much better.  A stricture is something I wouldn’t even wish upon my worst enemy.  It’s a difficult thing to explain to people who have never experienced it before but I am glad it is almost fully gone.  I managed to stay positive throughout the entire process; however, it was not an easy one.

Like most things associated with the CDH1 genetic mutation, it is not only a physical challenge but more of a mental challenge.  You know you need to eat to sustain your weight but your body won’t allow it to happen.  Each meal would initiate a new game of, “will it go down?”.  I would psyche myself up for each meal, chew food to a pulp, swallow, and then wait a minute to see if it would make it down.  This may be too much information, but I got really good at walking and spitting things up on the go.  It would take me close to forty five minutes to finish just a small portion of food.  Start dinner at the dinner table with Brandon, then move to the couch once he had finished eating.  Sometimes, I would avoid foods that needed to be chewed a lot because I was just tired of doing it.

Counting calories became a really big thing during the first few months of recovery.  I had to make sure I was consuming enough to sustain my weight.  I would try hard to eat all day but then step on the scale the next day to see that I had lost more weight.  At my lowest weight, I was 104lbs.  I was starting to look too thin and my family had mentioned it a few times.  This was not a battle I was willing to lose.

To complicate things, I would feel better after the dilations but about two weeks later, I would have issues eating again.  Physical stress.  Knowing that I had to go back to the specialists to be dilated again but not being able to get in for an appointment. Mental stress.  Watching your weight shed off and there was nothing you could do about it but keep trying.  More mental stress.  Starting to notice that your family is starting to worry about you….the most stressful.

Jump forward to the fourth dilation.  I haven’t had to run to the washroom in about three weeks and if I have to go, it’s because I’ve eaten too fast.  Something I can control.  I can eat close to a normal sized portion of food.  I’m feeling WAY better and I’m maintaining weight at a healthy 106.6lbs.  I know that I would have been a lot further ahead in my recovery if it wasn’t for this stricture.  However, there is no sense on dwelling on this and feeling sorry for myself.  It is in the past and as Rafiki states in the Lion King, “It’s in the past and it doesn’t matter…you can either run from it or learn from it”.  I choose learn.

When I was younger, I had fairly bad seasonal allergies.  One summer, I had hives all over my body.  I was so, so itchy all the time.  One day in the midst of scratching my arms, legs, and back, I told my mom, “I just have to make peace with my body”.

Almost 7 months post op, I can finally say that I’m on an even playing field with the stricture.  It’s not gone…yet…but I feel like I’m on the winning side and peace is nearing.