Cruising stomachless style – a 21 month update

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There’s something to be said about cruising without a stomach.

Late last year my husband and I booked a cruise to the Carribean with another couple.  None of us had ever cruised before but thought it would be a good trip as we heard that there is something for everyone.

Prior to leaving, I had some fears about the meals. Would they be readily available? Will they have my oatmeal for breakfast? How much sugar is in those mixed drinks? After experiencing dumping syndrome in full force last month, I can say that the fear of it happening again was loud and proud.

When travelling, the arrival and departure days are the most difficult. These are usually long days with limited access my comfort foods. Often you are unable to bring fruit or meat through the security gates. This knocks bananas or wraps. Also, depending on the airport, there are limitations on what you can purchase to eat.

In true trip spirit, I picked up a bunch of Kind bars as well ingredients to create my own trail mix.  Often I find the mixes in the stores are too sweet so instead I mix a variety of unsalted nuts with pepita seeds, sunflower seeds, and craisins.  It was my mom’s recent creation that I copied but I digress.

Our flight was at 7:30am which meant we had to be at the airport for 5:30am. Add in transport time and we are now at 4:30 am. But I can not forget to factor in last minute packing time so I’m now up at a healthy 3:45am. I wasn’t hungry when we got up so I didn’t eat anything. I figured that there would be a Tim Hortons there where I could order a breakfast wrap. Much to my surprise, the Tim Hortons at the airport did not sell breakfast wraps which left only muffins and bagels. Both would have resulted in my first vacation excursion – the porcelain throne. At this point, trail mix for breakfast didn’t look so bad.

Thankfully, we were given an in-flight meal which was a small sausage quiche with potatoes and sausage on the side. I wish I had taken a picture to display how unappetizing it looked but when you haven’t eaten breakfast and you are slowly running on empty, you’ll eat.  I scooped out the egg portion but left the pastry. I didn’t even attempt the potatoes and sausage as it was already a rich breakfast. So I may have eaten 1/2 a cup of egg substitute for breakfast.

After we arrived at the airport we boarded a bus to take us to the port. By the time we cleared customs, got our boarding pass and boarded the vessel it was rounding on 2:30 pm. Needless to say, we were all hungry, stomachless or not!

In true cruise spirit, the first place we located on the ship was the buffet.  It must have consisted of at least 10 different areas.  There was a bar just allocated to different types of bread.  There was even an area where someone would create you your own custom built ice cream sundae!  If I still had my stomach I would have loaded my plate until it was overflowing with food, eat it in 10 minutes and then return for seconds.  Maybe I’d even eat some dessert and then go back for more main course.

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The bread bar

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But there is a double edge sword to this buffet.  I was like a kid in a candy shop with only 25 cents to spend.

Each time I visited the buffet, I would survey the land to see what was available. Then I would narrow it down to my top few dishes.  Often they were the high protein, biggest- bang- for -your -buck kind of dishes.  Rice…no thanks.  Mashed potatoes? Maybe for the weak.  Steak – That’s what I’m talking about!  After finishing my small plate of food, I would often say farewell to the buffet and see you in a couple of hours.

I spent some good time at that buffet. In the mornings, I would get up early and go get early breakfast (oatmeal with walnuts, sunflower seeds and a mashed banana) and then go for late breakfast around 10:30 am (bacon, eggs).  I would also eat early dinner at the buffet around 4-5:30pm and then 2nd dinner around 8:30pm.  One day my friend was looking for me and she decided to check the buffet and of course that’s where she found me. We had a good laugh.

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One of my favourite mid day snacks – build you own nachos

When it came to 2nd dinner time, we often ate in the main dining room which consisted of a three course meal. I would often just order the main meal and share it with my friends. If I wanted an appetizer, I could often finish it but then only eat 1/4 of the main meal. The cool part is that the dining room dinner had many sugar free options that were listed on the menu. This also included dessert!  I definitely took advantage of the sugar free ice cream.

I couldn’t drink many of the beverages offered on the vessel as most of them were mixed with juice loaded with sugar. One day I happened to catch them refilling a juice machine and the first ingredient was high-fructose corn syrup, followed by glucose.  I quickly dumped out the glass of juice I had been holding.  I mostly ordered white wine, beer, or caesars on the ship.  I had sips of my husband’s frozen mudslides and other delicious sugary drinks.  I missed having frozen daiquiris, margaritas, and other delicious frozen beverages.

So maybe I couldn’t eat heaping amounts of food at the buffet. Maybe I had to bypass the ice cream bar.  Maybe I had to avoid the sugary beverages.  Maybe the buffet was a constant reminder of life prior to my total gastrectomy.  However, I have to focus on the positives.  I ate like a Queen those seven days and how much weight did I gain? Much to my own surprise. Zero.

 

The infamous dumping syndrome – a 20 month update

I thought I was dying.

Today I experienced dumping syndrome in full force. What I thought was dumping syndrome prior to this episode was more like watching 5 minutes of a Lord of the Rings marathon- extended edition.

It is something I would not even wish upon my worst enemy.

It all started with the pina colada smoothie. Brandon and I were preparing delicious beverages prior to resuming our game of Power Grid. The smoothie consisted of 1 cup of coconut milk (unsweetened), 1 cup of fresh pineapple, 1 banana and 1tbsp of honey.

All of the ingredients seemed pretty safe as there wasn’t a lot of added sugars. Maybe the fruit would have been of concern but I had eaten pineapple in large amounts and had been fine.

After blending this delicious beverage I ended up with about 500ml of smoothie. I drank about half of it in 10-15min.

You can already see where this is going.

Everything seemed fine and then it happened. Minute 16. Initially I experienced cramping. I figured I had just drank too fast as I often experience cramping after eating. Then came the pain and burning. It felt like acid was melting my insides. In hopes to neutralize the acid, I ate 4 crackers and 5 handfuls of left over movie popcorn.

The good thing was that the acid feeling stopped but the waves of pain continued and worsened. I decided to lie down and then the nausea came. Up I went to the washroom and it was at this point I knew the inevitable was happening.

I had read about this a lot and it was happening now. There was nothing I could do to stop it – the infamous dumping syndrome.

So I’m in the washroom unable to stand up straight, in pain, and feeling very ill. My breathing became rapid and shallow. I started to get really hot. I felt weak and lethargic. The literature wasn’t lying.

Then the big question I had been wondering about for a while was answered. Can you vomit without a stomach?

According to Websters dictionary to vomit is to bring up the contents of the stomach through the mouth.

So the simple answer would be no. No stomach, no vomit.

But now I know what does happen. Heaving. Then if your lucky regurgitation between heaving. But the good part is that no stomach = no stomach acid. Bonus! But it hurts because you heave and there is nothing that releases the pressure. I am grateful that this didn’t happen to me until now because my insides are all healed from surgery but this does happen to many early after surgery.

So after I emptied the top part of my intestines, it would only be fair to empty the bottom. I’ll spare the details but I can say that my colon hasn’t felt this clean since my colonoscopy last year.

After the dump, literally, I could almost immediately feel everything returning to normal. Although it felt like a lifetime, Brandon said I was ill for about 40 minutes.

My insides are still recouping from all the action this afternoon. I mentioned this episode to my stomachless friends and Marne replied, “It’s funny to me how you’ll be smooth sailing for a while and all of a sudden something reminds you that you don’t have a stomach!”

She couldn’t have been more correct.

30 days of Yoga – a 19 month update

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For the past 30 days I have participated in a 30 day yoga challenge and it has been a wonderful experience.  Challenging at times but overall mentally and physically rewarding.

I stumbled upon it one day while looking for a nice stretching routine to follow.  Lo and behold, it was the 1st of December and I decided to take the challenge and perform all 30 days.

I’m a mover and a do’er. I like to go-go-go. Early recovery taught me that you must relax and recover or your body will rebel.  Believe it or not, I was more flexible in my  legs and shoulders in the months after surgery than I had been in years.  I was relaxed and rested.  I had lots of time to think about my life because I couldn’t do much else…haha.  Over the past six months I’ve been feeling better and better and have been ramping up again.  Increased work hours, increased activity, jumping back to pre-surgery life.

In turn, my body has been returning back to the way it was as well.  Increased tone and tightness secondary to every day activities.   This yoga challenge made me stop, slow down, reflect, and stretch for 20-30 minutes a day.

The other benefit to doing the yoga was that is stretched out areas that had been affected due to surgery.  There are many fascial trains that were affected and yoga allowed me to stretch them and release tension and tone.  I also believe it helped me to break scarred tissues that remained from the surgery.

The creator of the 30 day challenge is about to release a 30 day yoga camp in January and I am planning on continuing this practise because….well I can now touch my toes!

Another activity that I have re-started post surgery is indoor rock climbing.  I have been off and on climbing over the past 5 years and felt the itch to return.  I boulder as well as top-rope.  Bouldering is performed on a large rock wall without a harness. There are crash mats below you and you are climbing lower to the ground.  Top rope involves a vertical ascent while wearing a harness.  Another person (belayer) is on the ground and will take up the slack in the rope as you ascend.

Rock climbing has been great because it is a full body work out and really challenges the core.

At this point in my recovery I’m feeling 80-90% there based on the day.  I’m still careful about what I eat and how much I eat but overall things continue to progress.

Thank you to everyone who has been supporting me and following me on this blog over the past two years.  Recently, No Stomach for Cancer has revamped their website and have started a community.   If you are part of the community, please feel free to add me: Cytosine Deleted.

I wish you all a Happy New Year and I look forward to what 2016 will bring.

 

It’s okay to have a bad week – an 18 month update

Early last year,  I blogged about Kubler-Ross’ five stages of grief.  It was more surrounding about my recent diagnosis of being CDH1 positive.  It’s applicable to a lot of life events and mourning the loss of your stomach definitely qualifies.

For some reason I had a difficult week a few weeks ago.  I woke up on Monday feeling extremely fatigued.  Not just tired but just not myself.  My weekend wasn’t too crazy so I couldn’t write that off as a reason.  Being in a healthcare field – I was able to pull myself together and continue motivating all my patients to persevere and deliver effective treatment plans but by night time I was wiped.  I thought I would just go to bed earlier on Tuesday and bounce back.  But same thing happened again on Tuesday.

By Tuesday evening, it all hit me.  My stomach is gone. It’s never coming back.  It unfortunate that I can’t eat certain foods and when I eat something that I can eat and is delicious, I can’t eat a lot of it.  I have to take a plethora of vitamins each morning.  I get lightheaded if I stand up too fast.  I have to wake up extra early so I have enough time to eat breakfast each day.   If I want to feel good for the morning, I have to eat oatmeal for breakfast.  I miss cereal.  I miss my stomach.

Maybe I should have waited another few years to have it removed? Maybe I could have lived my life a little longer with it? And so on and so on.

I don’t like people feeling sorry for me so I kept this all to myself.  Finally, Wed evening, I opened up to my husband and told him that I was having a hard week and that I really missed my stomach.  In a few simple words, he replied,

“Your stomach was going to kill you.  You made the right decision.”

I tell myself this most times when I start to feel frustrated by some stomachless challenges and I can get myself out of the funk within seconds but this time it wasn’t working.  It was good to hear it from someone else.

At the end of the week I randomly stumbled upon this letter that someone had shared on facebook.  It was all too appropriate and the timing was impeccable.

By that Friday I was feeling like my regular old self.

I am not writing this post for people to feel sorry for me. Please don’t. I am writing this to let all those CDH1 positive people out there who have had their Total Gastrectomies that it’s okay to have some time of weakness when you are always trying to be strong.

So following my not so good week, I’ve bounced back two fold. I’ve also made some great discoveries.

Right after surgery I tried not to combine liquids with my meals because it would fill me up too fast and I wouldn’t have room for those precious calories.  However, now I have realized that the more liquid I can consume BEFORE a meal, the easier time I have digesting that meal.  So now I try to drink some clear fluids prior to eating a meal to help get those digestive juices flowing or just prepare my new stomach for what is coming next.

When it comes to sleep, my sleeping patterns have never been the same post gastrectomy.  Some days I’ll sleep 10 hours a night and other times I’ll only require 4-5 hours.  Either way, I feel just fine when I wake up in the mornings.  After waking up at 4am back to back two days in a row I decided to investigate this a little further with my stomachless colleagues (thanks Steve, Rachel and Marne!).  Turns out we all have had this issues and we all figured it was just us.   I wonder if anyone else out there has this same issue?

I’m not so upset about this fact because I can get a heck of a lot accomplished when I wake up at 4 or 5am in the mornings.  I was happy to hear I wasn’t alone.

I stopped drinking Kefir a few months ago because to be honest, I didn’t love it.  But recently re-introduced it back into my diet and discovered that it has helped keep my GI flora happy and healthy.  I now try to drink a half a cup to a cup a day of it.  Kefir isn’t the most delicious but a necessity to staying fresh….if you know what I mean.

I’ve been doing strength training at the gym 2-3x a week and I am finally feeling like my strength is close to pre-surgery level.  I’m super happy that this has come back as I can now carry my entire grocery shop inside in one load.

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The scale hit 118lbs this week and I was stoked. That is only 9lbs off of pre-surgery weight.  I knew it was likely temporary…and it was, but I haven’t seen that number in a LONG time.  I am sure that with continued strength training and continued eating, I will continue to gain weight.  After all, in the last year I’ve managed to gain 11lbs.

And to top it all off, I can now drink plain old water!  I still can’t chug it but it’s now an option. Some days are better for drinking it than others but I’m happy that it’s back on the menu.

It has taken me three weeks to hammer down and get this post out which only means one thing. Life is getting in the way!

Catch you all in a month. Happy Holiday shopping!

 

 

 

 

 

November is Stomach Cancer Awareness month

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November is Stomach Cancer Awareness Month and it’s something that hits close to home for obvious reasons.  Prior to learning about CDH1 and Hereditary Diffuse Gastric Cancer (HDGC), I knew very little about stomach cancer and definitely had no idea that there were people out there living without their stomachs and have been for a while.  The goal of this blog is to share some facts about stomach cancer and if you’ve learned something, then I’ve done my job.

In Canada, the five year survival rate for stomach cancer is 25% (1). Stomach cancer is difficult to detect in it’s early stages as it rarely causes symptoms. According to the American Cancer Society,  the signs and symptoms of stomach cancer can include (2):

  • Poor appetite
  • Weight loss (without trying)
  • Abdominal (belly) pain
  • Vague discomfort in the abdomen, usually above the navel
  • A sense of fullness in the upper abdomen after eating a small meal
  • Heartburn or indigestion
  • Nausea
  • Vomiting, with or without blood
  • Swelling or fluid build-up in the abdomen
  • Low red blood cell count (anemia)

When you read this list, you can see that some of the symptoms are common among the general population.  How many people experience heartburn or indigestion out there?  I know I experienced heart burn since high school that worsened and was especially bad the five years prior to having my total gastrectomy.  I used to walk around with a constant supply of tums or other antacids.  Was this the beginning of stomach cancer? Who knows.  Often these symptoms can be attributed factors other than stomach cancer (i.e. stomach virus, ulcer, stress, etc).

HDGC attributes to less than 5% of stomach cancer (3).  CDH1 is a tumor suppressant gene.  Each person is born with two copies of the CDH1 gene which codes a protein called E-cadherin.  This protein is responsible for cell signalling and cell to cell adhesions.  When people are born with the CDH1 mutation, half of the team is already knocked out which puts all the responsibility on the remaining gene.  Researchers aren’t sure what knocks out the other one, but when it is gone – we’re in trouble.    This is why people with a CDH1 mutation or Hereditary Diffuse Gastric Cancer Syndrome are at a much higher risk for developing diffuse gastric cancer earlier in life.  The average age is 38 (3) but people have passed away as early as teenagers.

I’ve linked this before but to those new joiners to my blog (Welcome!) here is the link again. I think Dr. Perry Guilford does a really great job of breaking down such a complex topic in a way that we can all understand.  It’s from the No Stomach for Cancer’s Spotlight on Gastric Cancer event I attended back in April.  Skip to 27:54 to learn about CDH1.

Dr. Perry Guilford – 2015 Spotlight on Gastric Cancer

Genetic testing for the CDH1 mutation is available for families who fit the eligibility criteria.  In Ontario the criteria is as follows (3):

  1. At least two relatives with diffuse-type gastric cancer
  2. At least one diagnosed under age 50 or families with at least three relatives with diffuse-type gastric cancer at any age
  3. Families with one case of very young diffuse-type gastric cancer (e.g. under age 35), or families with diffuse-type gastric cancer and lobular breast cancer may also be considered.

Genetic testing is a BIG decision and definitely not something to be done impulsively.  For those who think they fit the criteria, please speak with a genetic counselor.

Thanks all for sticking with me on this blog post to the very end.  I hope you all learned something and feel free to share!

References

  1. Canadian Cancer Statistics 2015 (2015, June). Retrieved from http://www.cancer.ca/~/media/cancer.ca/CW/cancer%20information/cancer%20101/Canadian%20cancer%20statistics/Canadian-Cancer-Statistics-2015-EN.pdf
  2.  American Cancer Society  (2015, March 16).  Signs and Symptoms of Stomach Cancer.  Retrieved from http://www.cancer.org/cancer/stomachcancer/detailedguide/stomach-cancer-signs-symptoms
  3. Mount Sinai Hospital Zane Cohen Centre. (n.d.) Hereditary Diffuse Gastric Cancer Syndrome – HDGC.  Retrieved from http://www.zanecohencentre.com/gi-cancers/diseases/hdgc

 

Three decades down

On the 22nd this month I celebrated my 31st birthday.  I couldn’t help but recap the 30th year of my life.  At the end of my birthday blog post last year, I mentioned looking forward to what adventured 30th year would bring. I can tell you now that there were lots of adventures.

Last October I was struggling to maintain my weight. I was sitting at around 106lbs. I had been back to work for just under two months.  I struggled to maintain my weight as the stricture I had caused a lot of personal and family stress.  Physically, I was in rotten shape and eating was a continual experiment.

Well I’m happy to say that I now sit between 113.5-115lbs. I have not seen 112lbs on the scale for a long time. I’m at the gym at least 2x a week and am working a 32 hour work week with a near full caseload.

I have grown up a lot over the past year and continue to enjoy all of life’s small things. I’m ever thankful to have such a wonderful support network because without it, I would be lost.

I’m thankful for my health. Things can change so suddenly. Last week my mom (who also had a total gastrectomy in 2010) suddenly developed abdominal cramping. Eventually the pain was so severe she had to go to the ER. After taking a CT scan and running blood work, the doctors determined she had a “small bowel obstruction” and recommended investigative surgery. Five laproscopic incisions later and three nights in the hospital – mom was discharged home. Long story short, my mom is doing well and her small bowel is okay. My mom is just over 5.5 years post TG and this happened in a flash which made me remember that things can always change with no rhyme or reason.

CDH1 mutation still leaves me with a 40-60% chance of developing lobular breast cancer and I’d be lying if I said I don’t think about it. This month I have thought about it more as it is breast cancer awareness month and I received my letter that it is time for my annual screen. I’m sure the screen will be fine but screening always is a reminder that CDH1 mutation still is with me and my cancer risk is still elevated. Will I get a prophylactic masectomy? I haven’t decided yet but I do know I am going to wait at least another 7-10 years before seriously considering it.

I celebrated my 31st birthday with an impromptu hike with Brandon to one of my favourite places in town.  It’s a peak that looks over the entire town and the view is most spectacular in the fall.  After the hike we went to dinner at one of our favourite restaurants, Taylor’s Tea Room.  Normally they only serve breakfast and lunch, but more recently they have started to serve dinner on Thurs-Sunday.  We arrived at the restaurant around 7:45ish to an empty dining room.  We ended up having the entire dining room to ourselves for our entire meal.  It was an experience that was extra special and something that we couldn’t have planned.
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So the big question is, “Did I eat cake on my birthday?” Answer – yes, I did. Did I pay for it? You bet. Was it worth it? 100% it was.

Livin’ lean – 16 month update

Tomorrow is October 1st and I almost missed my 16 month update.  I’ve been telling myself, “oh, I will blog this weekend” and then that time comes and goes.  There is one major reason why I’ve had a hard time blogging this month – I’ve been busy living life!

It’s true that my life has a ‘new’ normal.  But when can you drop the ‘new’ and just say it’s life?  When is ‘new’ old?  It’s now been one year and four months. Is it still a ‘new’ normal or is it just normal?  I’m almost ready to drop the new and say it’s just life.

Yea, I eat frequently throughout the day.  Yes, it’s true, you can always count on me for giving you a snack if you get hungry because you know I keep food on me at all times.   My friends know that if they ride in my car they will always need to move that bucket of nuts before they sit down.  I still eat more than I should at a meal and then pay for it later.  Food coma has a whole new meaning.

I mentioned returning to the gym last late last year. That lasted until March before my gym membership expired.  Over the summer I played some baseball but didn’t do much formal exercise. I am happy to report that I have returned to the gym 2-3x a week.   I also signed up for six personal training sessions for extra motivation.

On the first day, I received a mini assessment where my initial measurements were taken as well as weight and body fat percentage. My training goals were also discussed.  Shockingly, I have 16% body fat, which is similar to an athlete – Score! However, I also have the forced expiratory volume of a 51-year-old (this is how fast you can expel your air after taking a deep breath).  This taught me two things:

1) I am a great advertisement for my personal trainer when I work out with her
2) I need to work on some serious breathing exercises

I’m optimistic that with returning to the gym, I will be able to regain the strength that I have lost over the past year.  It was different for my trainer to hear that the purpose of my personal training was not to lose weight, but to gain weight.  Often, my trainer will point out to me that I’m smiling through my work outs no matter how brutal the exercise.  I don’t realize this is happening but I believe it’s because I’m happy to be back at the gym again AND because if you frown and tell yourself the exercise is brutal, it will be 10x worse. I guarantee it!

You can live without a stomach? – a 15 month update

I cannot believe that it’s already mid August.  Where has the summer gone?  This summer has definitely been an exciting one to say the least.

When I last visited the surgeon back in June, she mentioned to me that it would take 2-3 months to feel like I’ve returned to pre-surgery normal.  Well pre-surgery, but missing an organ sort of normal.  She couldn’t have been more correct.

As I mentioned last blog post, I changed jobs and started working at a new physiotherapy clinic.  I have been gradually building hours over the past six weeks and for this first time this week, I was able to put in closer to full time clinical hours.  It’s been a long time in the making and I’m pumped to say the least.

At work I am helping others get well but little do the patients know that they are also helping me return to normal as well.  Performing daily manual therapy on people as well as demonstrating a variety of exercises, has resulted in my body shape returning to pre-surgery form.  I am getting stronger as well as more lean.

I also try to practice what I preach and that means working on my own posture.  Often I find myself walking with forward head posture.  Essentially it means my shoulders are rounded forward, my neck in slight extension with my chin jutting forward.  This is something that has been stuck with me since surgery and I am now making a conscious effort to change it.  It stems from lack of core strength as well as not standing up straight for the month or two after surgery due to the incisional discomfort.  My brain learned that this posture was upright for me, when in fact, it was not.  When I stand erect it seems I am leaning slightly backwards but in reality I am upright.

Example of forward head posture on the right.

Example of forward head posture on the right.

Thankfully, as a practicing physiotherapist, I am able to give myself my own home exercise program to improve my posture. However, I would recommend that people who have had a prophylactic total gastrectomy see a physical therapist when they are cleared by their doctor to do so.  I believe it will reduce many problems that can creep up on us down the line.  I noticed at the “Spotlight on Gastric Cancer” event in April, that many of us had the same posture and I believe it is a result of surgery.

I often forget that living without a stomach is shocking to some people.  The other day I was in the vitamin aisle at the local grocery store and an employee asked me if she could help me out.  I mentioned to her that I was looking for vitamins that are easily absorbed because I was lacking a stomach.  The look on her face was priceless.  She said, “You can live without a stomach?”.  I wasn’t sure how to reply since I was very much alive and in front of her. Haha.  Its become a normal in my family as well as among my friends.  I’m part of a strong community of felIow CDH1 positive stomachless people and it becomes even more of a norm.    I have to remind myself of the feelings I felt when my mom first told my brother and I that she would be removing her stomach.   I speak of it so nonchalantly about it but to the general public, I guess it is a little bit of a wild thing.

I am happy to finally feel like I am returning to pre-surgery normal.  Looking back, the stricture really put me behind in my recovery, but there’s no point in dwelling on the past.  Just move forward and forward I will keep moving!