6 weeks and reality starts to sink in

6 weeks to go….6 weeks….wow!

Well, much has happened since I left off.  The new sectional is great and every time I sit on it, I am really thankful we replaced our old couches.  I fell asleep on it last week and Brandon said I kept waking up to make sure I wasn’t drooling all over the new couch.  Sectional passes the sleep test!

This week, I decided to make my story Facebook public and a few days later my company decided to dedicate April for Rachel.  I am very honoured that they have decided to do this for me.

Just a little background about why this is important to me.  I work for a large healthcare company which has 1,000+ employees and many has clinics across Canada.  The clinics are composed of physiotherapists, chiropractors, kinesiologists, physiotherapy assistants, registered massage therapists, occupational therapists, and naturopaths.   The company blog will focus on raising awareness about CDH1 and hereditary diffuse gastric cancer syndrome to not only the staff, but also to all the patients who have linked to the company through social media (Facebook, Twitter, etc).  The blog will also be following me leading up to surgery and the Relay for Life (June).

Yesterday, the first company blog post was released onto Facebook and the response was phenomenal.  To my surprise,  many of my friends shared the link and some of these people are newly graduated physicians and upcoming physiotherapists.  This will be really great for spreading awareness not only to the public but also to upcoming healthcare professionals.   I also received many positive and supportive comments and personal messages.   Again, I can’t stress enough how lucky I feel to have such a wonderful support system.  I’m not someone who likes to be in the limelight but I thought I would turn something negative into something positive and even if it saves one person’s life, then it was all worth it!!  Thank you, thank you, thank you everyone.

Last week, I put my gym membership on hold. It didn’t cost anything but I had to bring a note from a health care professional.  This was fairly easy and thankfully one of my colleagues hooked me up.  Reading the letter and putting the membership on hold last week was a semi-sad moment because I realized that it would be few months until I would be able to get back to the gym.  I had written notes like these to many of my patients and it was weird being on the other side of it for once.   I decided to put it on hold now because I will be away for half of April and then I’m hoping it will be nice enough to exercise outside until the surgery.    It was definitely a moment where reality sunk it a little harder.

But on the upside of things, I’m 90% packed for Japan and we take off tomorrow.  I look forward to my “Farewell Stomach Tour – Japan Edition”  over the next two weeks.   Thanks Steve for the inspiration!!

For those of you who have just started reading my blog, I just wanted to re-iterate that you don’t need to worry about me.  I have 6 weeks to do what most people dream of…eat whatever I feel like and not worry about the weight gain.  Plus,  I’m going on vacation for two weeks so seriously, I feel worse for you guys than myself!

Bon Voyage!!

 

Surgery = an excuse to buy a new sofa

Our economy couch

Our economy couch

This is one of the two couches we have in our house.  We bought a sofa and a love seat when we moved in together in 2011.  At that time we didn’t have any furniture so we picked up the nicest looking but also cheapest couches we could find at the Brick.  Two years later, we realize why they were the cheapest couches.

You can see from the photo that the cushions are falling off the front of the couch.  Because I am small, when the cushions slide forward, Brandon likes to wedge me into the couch, haha.  This lead to my daily ritual of pushing the cushions back before sitting down.  This happened about 2-3x a day.  Not only do the cushions slide out, but I almost disappear when I sit down on the couch due to the sag.  Okay that is an exaggeration but still you get what I mean.

When we found out that I would be having surgery this Spring, we decided it was a great excuse to purchase a sectional couch for my recovery.  Also by ‘we’, I mostly mean me.  Haha.  Today it was delivered and I am super excited about it.  So excited, that I decided to blog about it.  P.S. When I was 16, I never would have dreamed about being excited about a couch, funny how priorities change.

Here is the couch that I will be spending a good portion of my day on when I get home from the hospital.

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Looks very inviting, doesn’t it?  And on that note, I’m going to kick back and relax.

Part 2: Trip #5 down, 7.5 weeks left to go and a big bowl of Ramen!!

What’s that you say….only one poke? What?  You got it!!  I had the easiest time ever giving blood for the pre-op blood work.  Before I went in to get poked, Brandon ran me through a series of arm and wrist exercises to increase circulation to my arms and it worked.  I avoided any caffeine that morning and also drank plenty of water. The tech had no problem finding a vein and the blood was taken in no time.  I was pretty pumped afterwards and came dancing out of the blood lab to meet back up with Brandon.  I think we’re onto something and I know what I’ll be doing before I get my IV for the surgery.

After we finished the blood work, we walked across the road to my genetic counsellor’s office to say hi.  Unfortunately, she was not in but I was able to drop off a survey her assistant had delivered to me earlier in the day.  Since the CDH1 genetic mutation discovery is still fairly new, research is still being conducted and I am apart of a few studies.  Oh, I also learned that if you have the CDH1 gene mutation, it is diagnosed as “Hereditary Diffuse Gastric Cancer Syndrome”.

At this point it was around 3:00pm and we were hungry.  So we walked to a nearby Ramen restaurant called “Kinton Ramen” and had lunch.  This restaurant is unique in that 95% of the employees at the restaurant are Japanese and 100% speak Japanese.  You eat at a lunch bar instead of a traditional table.  All of the employees yell, “Welcome” in Japanese when you enter and “Thank you very much” when you leave.  The music is pumping and the Ramen chefs are behind a glass window making all the soup. We like going to this restaurant because we don’t have anything like it close to home so we usually take advantage of it when we have to go to Toronto for my appointments.  I ordered a Shoyu Ramen with pork shoulder but was only able to eat half of it because it is so large!

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After lunch we made our way back to the train and came home.  The Ramen made up for our not so nice pre-op doctor experience.

Up next: Having surgery = purchase a nice couch for recovery

Part 1: Trip #5 down, 7.5 weeks left to go and a big bowl of Ramen!!

It is that time again folks – my one week update – Part 1.  Yay!

Last Wednesday, I completed my 5th trip to the big city – my pre-op appointment.  For the most part it was fairly uneventful and an appointment that I was told would take two hours, took just under one.

Brandon and I took the train to Toronto because we always seem to finish during rush hour and we’d rather not drive through that to get home.  A drive that would usually take around an hour could easily take 2.5 depending on the traffic to get out of the city as well as on the highway.  For those of you who are unfamiliar with greater Toronto area rush hour – it can be quite bad because there are only two major highways that leave the city and one privately owned highway.  If there is an accident it can snag things up pretty bad.  But I digress, back to my appointment.

We arrived at the hospital about 20 minutes early but we were taken in pretty much right away.  They asked me when my surgery date was, and I said, “May 14th”.  The receptionist looked puzzled and then replied, “Oh, we have May 12th on our paperwork”.   The day I was given the surgical date, I won’t lie, but I was only half paying attention. That day there was a lot going on, so I’m not surprised I got the date wrong.   Oh well, the sooner the better.  May 12th it is!!  I’ve already edited my phone calendar, you know, in case I forget.  Haha.

We were guided into a large room with a chair beside the desk and two chairs directly across from me.  I sat beside the desk and Brandon sat across the room in one of the other two chairs.  I first met with the pharmacist to review my medications and allergies.  Since I am on no medications and have no allergies (except for seasonal and recently discovered intolerance to cow’s milk) this meeting took maybe 5 minutes.  Then we waited for the anesthesiologist.    The anesthesiologist was very educational.  She explained to me that I will be under general anesthetic initially and then I will be intubated  in order to provide continual sedation since the surgery is quite long.  I also will have an epidural inserted into my mid spine in order to numb me from my mid ribs all the way to my pelvis.  This will there from surgery day up to day four or five depending on when I am ready to start eating again.  Sometimes I wonder if I will feel like my top half is separated from my bottom when I wake up?  After each health care provider left, Brandon would walk over from the chair he was sitting in across the room and give me a ‘good job, you’re doing well hug’.  He has been incredibly supportive throughout this whole journey.  Brandon is awesome and for those who know him, this is nothing new.

After the anesthesiologist left, we were welcomed by the nurse.  She explained to us that I should not eat or drink anything after 11:59pm the night before.  We were also told that we have to be at the hospital three hours before our appointment times.  Kind of reminded me of when you fly internationally and how you have to be there three hours early…only this will be a whole different ride.  The nurse also explained to us the visiting hours as well as what to bring and not to bring to the hospital.  She mentioned to bring supplies in case I have my period.  Apparently the anesthetic can make women spontaneously have their periods early.  News to me!  Before the nurse left she took my blood pressure and wrote requisitions to have my blood work done.  More on this later.
Next came the doctor, my least favourite part and the reason this post is so late.

I was not impressed by the pre-op physician.  He was very unprofessional and not even sure what his purpose was at this meeting.  I have to talk about it though because I know some of my readers like to know details.  When he entered the room, there was no handshake and only a quick, “Hello my name is doctor…”  I’m not sure what his name was because he said it so fast.  He went through my medical history in a blur (i.e. diabetes, heart conditions, high cholesterol, thyroid issues, etc).  He said it as if he was in a worlds fastest speaking contest and then trailed off at the end so I couldn’t even answer him if I wanted to.  I am 99.9% sure I had nothing he was asking about but there is always that 1% that hopes he didn’t miss anything he should have caught. During the whole meeting he kept looking back at Brandon, who was behind him and giving him what I called, “the stink eye”.  It must have happened at least three times. At one point he said, “you think I know more than you but I don’t, what is the name of the gene you have again?”.  Shouldn’t he know this? It’s in my chart?

Next came the auscultation. The part that makes me the most angry. I have training in how to auscultate and if he ever knew this, I’m sure he would have done a better job.  I will put up a general diagram from google about the areas you should auscultate.

General areas to auscultate

General areas to auscultate – from thenursingprocess.wikispaces.com

The doctor only auscultated the two upper anterior segments (the two black dots over the upper chest).  He asked me to breath in and out; however, he did not listen to the entire breath sound and was talking to Brandon at the same time.  Then he placed the stethoscope over my stomach for a split second (not to mention over my clothing) and at that point I was talking at the same time.  I’m sure he didn’t hear anything but our voices and the rustling of my clothing.  Worst auscultation ever.  I’m sure my cardio-resp prof in University would have had flipped her lid on him. Before he left, he made a comment about the red laces on Brandon’s shoes could make up for the dimness above the neck.  Brandon didn’t say more than one sentence this whole meeting so I’m not even sure where he got that from.  Needless to say, it was very unprofessional.  If I remembered his name, I would have complained.

Then the doctor quickly left.  That was the end of my mini-physical.  No description about the surgery (although I am well versed in it at this point but another explanation couldn’t have hurt), and I was too angry to ask any questions, plus he was in too much of a rush.  I hate to be negative but that part was honestly a waste of his time and the nurse could have done all of that.  Because I am young and healthy, he must have felt that this was not very important meeting to be thorough but it is still upsetting to this day about this meeting.  Sorry to be Debbie Downer but something had to be said about that meeting.  Okay rant over.

Part 2 to come! Stay tuned.

 

Changing the Story

This was written today from one of my CDH1 blogger buddies, Steve.  I believe that everything happens for a reason and I really enjoyed reading this post today.

P.S. I received a phone call yesterday from the fertility clinic.  A lab in Detroit is able to create a probe to screen for my CDH1 genetic mutation.  So if we choose to go invitro, it is possible.

Steve Dang

A couple days ago Kate and I were going for a walk which has become a beautiful regimen in the Dang household. I have to walk at least three times a day to keep my bowels moving. When we walk, we walk incredibly slowly taking in and talking about life. The other day we were talking about how incredibly blessed and fortunate for the past 6-9 months. A lot of people, are not as fortunate. Last year I went to Guatemala and came home incredibly sick. When we went to our gastroenterologist, he was determined that we were going to get over the stomach bug, but he could not over look my family history. He kept pushing me to go to Stanford to get genetic testing. Once the referral to Stanford was out, Stanford kept calling me over and over again to come in and get tested. The way that…

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8 weeks and counting down

I’m trying to do at least one post a week leading up to surgery but over the past week, I haven’t had any great ideas.  So this will more just be more of a general update.

Last post I talked about having up and down days.  This past week has been very positive.  I feel really good about everything and I’m starting to get excited for our trip to Japan.  I ordered our Yen last week and all our hotels are booked.  We just have to pick up our rail passes and that will be it for things to do before we leave (minus the packing).  I’m a little weary of the 13 hour plane ride to get there but I’m excited to experience crossing the international date line.  I’m also looking forward to spending two weeks with some of my long time highschool friends.  I hope we don’t all get sick of each other!!  Last trip we all had together was to Mexico in 2010 for a friend’s wedding and that was amazing.  When we come back it’s Brandon’s 30th b-day!  Although he has to spend 13 hours of it on the airplane, when we get home, he’ll have all 13 hours of his day back because of the time change – Longest birthday ever!!  More on Japan later – I’ll be sure to keep my blog updated for that trip.

Aside: I want to spend a quick moment to elaborate a little on my travel group.  I am 4th generation Japanese-Canadian.  I have never been to Japan. I don’t speak the language (sadly) and I look 100% Japanese (or depending on who you are talking to, Chinese, because I feel like for some people asian = Chinese).  I am travelling with four Caucasian men. Can you see where this is going?  I am going to look like a Japanese tour guide for sure.  Thankfully, my one friend who is the groom, will be travelling with us for the first half of the trip. He is fluent in Japanese and has lived in Japan and is celebrating a marriage with a Japanese woman.   I’m banking on him during awkward situations.

A few weeks ago I ordered the “No Stomach for Cancer” t-shirts.  They arrived in the mail last week and I plan to wear them every Friday leading up to my surgery at work during the dress down days.  I hope to raise awareness about the CDH1 gene mutation as well as the No Stomach for Cancer group since it has been a great resource and the people who run the foundation are just wonderful.  I am planning on doing some sort of fundraiser for the foundation the month leading up to my surgery as a token of gratitude for all the support.  I have submitted an application and am waiting response. Once I am approved, I’m sure I’ll be advertising on my blog.

Much like the other CDH1 gene mutation carriers who are about to under to their total gastrectomies, I have been eating a lot of foods that I normally avoid or limit.  I’ve also stopped caring about not eating past 8pm.  It is an odd concept for me to digest….pun intended! But it has resulted in weight gain – I’m sitting around 130lbs now.  Yay! I’m sure I’ll lose some on my trip from walking around and eating Japanese foods but I will go into full pre-op mode when I return from the trip.

Speaking of pre-op mode, I will be going back to Toronto on Wed for my pre-op appointment.  It will likely be one of my last trips to Toronto before the actual surgery.  The only other appointment I will have is one with a dietitian and that occurs right before Easter (good timing!).

So that’s about me for this lovely Friday morning.  I hope everyone has a fantastic weekend!!

CDH1 in the news

Aside

Fellow CDH1 gene mutation carrier, Kate, talks about CDH1 and her choice to under go a total gastrectomy.  Her story was featured on her local news station.    I’ve also included a link to her blog under the ‘interesting reads’ tab.  The difference between her surgery and mine is that I won’t be having keyhole (laproscopic) surgery due to recommendations from the oncologists. Instead I will be having open surgery. Thanks Kate for letting me post this.

http://au.news.yahoo.com/video/watch/21800516/brave-kate-fighting-on/?post_id=528285794_10152191809120795#_=_

10 weeks and counting…

motivational quote

The last two weeks have been up and down for me.   I have been finding it difficult to get out and get to the gym to do my proposed work out regime.  I now realize, my main motivation for going to the gym in the past was to maintain my weight.  Now that I am trying to gain weight (still a weird concept for me to comprehend) it’s has been really tough to motivate myself get there. Especially when it’s -20 degrees celsius below with a wind chill that makes it feel like -30.  Oh, and when take my gym clothes from the trunk of my car to the change room, it’s like putting on a suit made of ice.  I am not doing so well with my work out plans.  I am hoping once the weather gets nicer, I’ll get back outside and start jogging a little.

I am also noticing things in my every day life that will have to change post surgery.  I have a fairly busy schedule at work, moving from patient to patient. Mobilize this joint, check out someone else’s exercise, talk to another patient who has a question about progress, do some paperwork, run to the washroom…maybe.  It’s pretty much non-stop and majority of the days are 8+ hours with the longest being 11.  I have one lunch break during the day.  Most of the time, snacking is done on the fly and very fast.  I have mastered eating lunch in 10 minutes.  This all will have to change.  I have discussed with my mom (who underwent prophylactic gastrectomy in 2009) about this, and we have decided that nuts will be come my new best friend.  I will keep this clean and not insert a joke here.  I also worry about dumping syndrome while working, but this will be something I’ll just have to try avoid and adapt.

When it comes to grocery shopping and eating out, I know this will change.  Before I was diagnosed with the cancer, Brandon and I tried not to eat out too often because we know it adds up over time.  However, I’ve stopped caring about this we are eating out about once a week.  We’ve decided the money we spend on eating out now will be saved on grocery bills/future restaurant bills for the few months after surgery.   I’ll become a cheap date!  In April as I lead up to the surgery, I am sure I am going to splurge on all the best foods.  How many times in your life do you get to say, ‘I’m trying to gain weight’.

On clothing: it saddens me to look at my clothing collection and not know what will or will not fit me after surgery.  I know that things won’t fit afterwards which is upsetting but on the plus side, I’ll get to go shopping for a whole new wardrobe. I remember my mom passing a lot of clothing down to me when she was changing sizes.  I acquired a lot of awesome work clothes out of it.  However, soon I too will be passing down these things.  Again, fingers crossed I won’t have to replace my lululemon and under armor gear!!

The waiting game is hard and your mind can play brutal tricks on you.  I have always suffered from heart burn, so now when I get episodes of heart burn (which is about 5/7 days of the week), I get worried that it’s the cancer getting worse.  I also suffer from indigestion, which also is nothing new, but scarier now.  I know that the odds of me having worse cancer are really low, but it’s still hard to just ignore all the symptoms and not thing twice about them all.  Also, my mom’s father passed away at 30 with this disease.  I keep reassuring myself that if it was a bigger deal, the gastroenterologist  wouldn’t have let me go to Japan and I would have had my surgery sooner.

It is a weird thing to say but I am actually looking forward to having my stomach removed.  It is unfortunate that it has to be done, but I’d rather have it taken care and know it has no chance of spreading vs. playing russian roulette.  Knowing that I have cancer right now (even though it isn’t likely spreading anywhere else) is scary.  Every week that passes is one more week closer to having a peaceful mind without stomach cancer.

At this point, I’d like to give a shout out to my fellow CDH1 bloggers who help keep things real.  Here’s to Kate who had her stomach removed a couple of weeks ago as well as Steve who will be having his total gastrectomy on Thursday.  Also, shout out to Rachel who was in the similar boat as myself (cancer found in Nov and had her gastrectomy Dec 2013) and Marne who is 9 months post op today!!