Seven more reasons to be thankful

I’ve had a busy week this week and lots of updates for everyone.

Wednesday I had a follow up with my surgeon. I was hopeful that this may be my last appointment but I will be returning in November. But that’s okay! It was a great appointment.

The intern who I met with gave me some great advice and I felt pretty happy at the end of the appointment. Not only did he ask me about how I was doing with my physical symptoms, he also made sure I was doing well mentally. He reminded me that it’s important to have a good work-life balance and not to rush getting back to work, especially because my job is physical.  I really appreciated his advice because I am a do-er and I sometimes feel like I should be farther ahead than I am.  I had hoped at this point in time I would be back working regular hours.  I know recovery takes a year but I am just too impatient!

He also tried to call the hospital that performs my stricture dilations.  I was supposed to be dilated beginning of September.  Unfortunately, he was unable to speak with anyone and ended up leaving a voice message.  He joked that he always has to leave voice messages because they never pick up the phone.  As a physiotherapist who often calls adjustors advocating for patients, I fully understood and appreciated the humour.  He said, “next time, do not leave the hospital without booking your next appointment”.  Great advice and duly noted.  It’s never fun having the dilation, being able to eat so well, then slowly having that taken away as the space shrinks back down and there’s nothing you can do about it. He said he was going to continue calling and hoped to have me booked soon.  Me too!

I also received an update on my pathology report and the pathologist discovered seven more foci of cancer in my stomach.  The largest one was 2.5mm which is fairly small but still scary!  Just one foci was enough to scare me back in January but now the total has increased to 18.  Wild.  Seven more reasons why I’m glad not to have my stomach.

On Thursday, Brandon and I went for a small jog down to the local hardware store.  I managed to run for about 10 minutes without stopping.  I was super happy and impressed my cardiovascular system could handle it.  Okay, maybe it was all downhill…but I still made it!  I mentioned on last week’s update that there is a 5km Santa Claus run that Brandon and I participate in annually and this year it is November 30th.  I wanted to see what I was up against.

On Friday, I made an appointment with my family physician for my routine check-in.  For the past three months, I have been visiting her monthly and having blood work performed to ensure my levels are all normal.  After each blood test, I usually receive a call from a nurse giving me instructions to add another vitamin or mineral supplement.  First time it was iron, last time, vitamin D.  I haven’t required a B12 shot yet because my levels are in the upper range of normal.  Yay!

My family physician told me to stop doing strenous activity (running) and to avoid returning to the gym because my levels are still off, I haven’t had a period in a while (don’t worry folks, I’m not pregnant), and I am still losing weight.  This was sad news for me but I think I’ll still do a little run/walks here and there to build my cardio back up.  I continue to do my 15 minute strengthening program.  I didn’t need more blood work this time because she figured it would be the same since I haven’t had the dilation yet.  I will follow up with her 1 month after dilation.  She also referred me to her dietitian.  I’m not sure how much this dietitian can tell me on top of what I already know, but I will always take more information if it’s offered to me.

Speaking of food,  I often struggle with finding something to eat for breakfast.  Before surgery, I would eat cereal for breakfast.  Now, it just isn’t the same because it takes me too long to eat it and sometimes I get dumping from the carbohydrates.  So I switched to oatmeal.  Oatmeal is great but when you eat it every day, it can get a little mundane.  I was flipping through my “Oh She Glows” cookbook and found a great oatmeal recipe.  Instead of adding milk to my oatmeal, I could add vegetable broth.  Instead of just having oatmeal in the bowl, I could add some lentils for additional protein.  It was a great discovery and I have really enjoyed the change up.  I also top it with hummus or salsa.

So I think that’s about all for my weekly update.  I cross my fingers that I will be called next week for my dilation.
Oh and I also have updated my “Fellow CDH1 Bloggers” page on my blog.  I have come across a few other helpful resources that may help you too!

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Too skinny? No problem

Two days ago, I had a great chat with my RMT (registered massage therapist) and he pointed out that when I was speaking about my weight loss it usually was negatively.  I often say things like, “Oh I’m so thin now” or “all my muscles are gone”.  When I think about my past blogs, a lot of it has been focused around weight.

So that got me thinking….

When I wake up in the morning, I feel pretty awesome.  Refreshed.  Awake.  Ready to take on the day!  Then I start my morning routine and that usually involves stepping on the scale.  If the numbers have increased, I continue to feel great, but if the numbers have decreased, it can be discouraging.  How can I have lost weight when I ate all day?   But what if I didn’t step on the scale and just kept on with my day?  No discouragement.  Still feel refreshed.  Still ready to take on the day.

I tell my patients that age is just a number, it’s all about how you feel.  There are 90 year olds who feel fantastic and there are 5 year olds who are very sick.  Although monitoring my weight loss is important, I should focus more on how I’m feeling and not the number itself.   I often hear, “Oh wow you look great!”.  I reply, “I feel really great as well”.  Then I look in the mirror and I can see and feel more of my skeleton than before.  When I am lying in bed, I can no longer sleep with my knees touching because I can feel the bones butting against each other.  I can’t help but compare my new body to my old body.  I don’t “look” great in my mind.

But comparing really gets me no where!  My stomach is gone.  I am a different person than I was four months ago.  I won’t have my stomach back so I should really stop comparing.  I should focus on the positive things about the weight loss.   If people are saying I look great, I obviously look great and should start believing them.

I have decided that I will continue to eat as many calories in a day and if I lose a pound.  Don’t get discouraged.  I am still recovering.  As long as I am feeling great and I am continuing to eat as I should, things will all work themselves out in the long run.  Even though I may not feel like I look great some days, I will keep saying it to myself and I will come around and believe it 100%.

Not dwelling on my weight so much over the past day has already made me feel a lot better about myself and my body image.  When I stepped on the scale today and it read 105.6lbs, I didn’t tell myself, “Oh you must stay above 105lbs”. I told myself, “that’s okay, still lookin’ good, today is another great day”.

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Four month update – Becoming a better physio

I’m now four months and one week post op and I have made some significant gains over the past two weeks.

In terms of work, I am now up to an 18 hour work week.  I work three afternoon/evening shifts a week.  While I am at work, it feels like nothing much has changed in terms of my physical capabilities.  I am able to do everything that I was able to do before surgery (although, I do have a lighter caseload).  However, when I come home, the adrenaline fades away and as the week goes on, I become progressively more fatigued.  This happened a little bit at the end of last week and more so at the end of this week.  It’s an odd fatigue though.  It doesn’t feel like I need to go to bed and sleep.  It’s more like you feel slow and sluggish although you look just fine.  I have a feeling that this is a combination of building endurance for work and being nutritionally deficient.  Since I am a do-er, I can’t help myself but just keep pushing through it.

More frequently over the last two weeks, I have been feeling mild upper/mid thoracic pain. As a physio, you can’t help but try self diagnose yourself.  There could be many reasons but I have come up with a couple of explanations:

1)   To avoid a large anatomy/physiology lecture, I will stick with the Coles notes version.  Basically, the nerve supply to the stomach originates between your 6th and 9-10th thoracic vertebrae.  If there are issues with your stomach you may have referred pain.  See diagram below:

2) It may also stem from a combination of weak musculature through my thoracic spine (secondary to sitting on the couch and poor posture during the first couple of months of recovery) and a weak core.

My mom had the same thing after surgery and I am wondering how many other people post total gastrectomy also experience the same thing.  I think it would be a great research paper to write…maybe I should start a study? Haha.   Anyways, I have made a point to do a series of upper back exercises and core exercises every day to see if this will solve the problem.  I have also started seeing a registered massage therapist to help complement my home exercises.

Speaking of exercises, I am now  able to complete a full thirty second plank AND I challenge myself by lifting my feet off the ground one at a time. I am also able to complete three full push-ups.  Woo Hoo, three is better than none!  There are a series of other exercises that I am doing at home to help  me build up strength and they are getting easier each day.  I am more motivated to complete my home exercises now that I am back at work telling people to do their home exercises.  Lead by example, right?

Before surgery, I would hear my patients say, “I am going crazy not working” or “I just want to be able to walk 5 minutes”.  I would watch them try to roll over on the bed and have difficulty.  I would see the pain in their faces as they flex their knee after having a total knee replacement.  I thought I was a understanding physio before I had my surgery, I now know, I had a lot more to learn because I have and I still am living it.  I now know what it is like to be off of work for a prolonged period of time.  I know how hard it is to just get out of bed when you are in pain.  I know that sometimes exercises will hurt but they are necessary for recovery.   Although I may not be as strong as before, I know that I am returning to work a better physiotherapist than I was four months ago.  Yet another unexpected perk.

Eating update

In terms of eating, I am doing well with what I’ve got.  The stricture is still present and I know that it is still closing.  Unfortunately, I am back to spitting up food 1-2x a day. Often, it’s due to me swallowing too much at a time because there is less space for the bolus to pass through.  I was used to swallowing more at a time so now I have to go back to what I was doing before the last stretch.  I also have started to experience the infamous esophageal spasm.  I describe it as a pain on the left side of my abdomen that feels like a deep constriction which then radiates into my left shoulder and sometimes up my neck.  It lasts about two to three seconds.  I still haven’t been called for an appointment for the stricture dilation but I am following up with my surgeon on Wed so we will see what happens.  Despite this little set back, I am able to eat a larger quantity of food in one sitting.   It takes me about half of an hour to forty five minutes but I am now able to polish off a side plate worth of food.   This has been very exciting and I hope that it keeps going! Once there is no more stricture, I should be able to finish it a lot faster.

I am more bold in my food choices and purchased a box of Oreo’s at the grocery store.  I ate one last night before bed and that way if anything bad happened, I would be sleeping…haha.  I also tried to eat a quarter cup of chocolate chip mint ice cream.  After three spoonfuls I started to feel uncomfortable so I stopped.

Bread still continues to be an issue.  Anything that is white and processed (like Wonderbread), it makes me feel awful afterwards.  However, anything that has been freshly baked or gluten free has been a lot better.   I believe that it has something to do with the sugar content in the white breads.   I make sure I load something with protein on top as well (like cheese).   I continue to experiment.  I am not ready to say goodbye to bread yet, so I keep trying.  What doesn’t work one week, may work the week after.

I feel thirsty a lot but I have trouble staying hydrated.  Before surgery I was able to drink up to two litres of water in a day!  Now I am lucky to drink one glass.  I have started to put a slice of lemon in my water to help break the surface tension in the water and make it easier to swallow.  Lemon also aids digestion so it’s a win/win.

Weight update

I am at my lowest weight yet, 105.6lbs.  But I am still above 105! Yahoo!

Since I have returned to work I am now  building more muscle.  I am also building muscle from my strengthening program. This is a great thing.  But it comes with a steep cost.  More muscle = more calories burned at rest.  Clearly, I am not keeping up with my caloric intake.

I would love to return to the gym for some yoga or zumba classes but I am worried that this will cause me to lose even more weight.  I know that my cardiovascular endurance is horrendous right now and needs some serious help.  There is a 5km Santa run at the end of November that Brandon and I participate in annually and I am hoping that I will be able to participate in it once again this year.  I don’t know if I will be able to run 5km but I have my fingers crossed that I can at least run/walk it!

So that about sums up my four month update!  I will keep you all posted on what happens after my surgical follow-up on Wednesday.

 

 

 

 

 

 

 

 

 

 

 

 

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!

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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!