Far Too Long – 1 year 11 month update

It has been far too long since I have provided an update for you all. So here it goes.

There have been a few things that I have noticed since my initial surgery, my voice is not what it used to be; I am unable to sing those lullabies to my my daughter, the national anthem, that catchy tune on the radio or yell or cheer or call my dog with any strength in my voice. I am still uncomfortable some nights on the wedge pillow for that necessary 30 degree angle, but it’s getting better and I have been getting a more restful sleep with the many pillows that now take up half the bed and annoy the daylights out of my spouse.

In December, I was finally able to stabilize my weight,  I was also able to start gaining weight. My weight finally increased by 8 lbs to a total of 112 lbs.

About 8 months after surgery and continuing into 2016, I started getting slight pains in my right side under my ribs. It would start hurting a bit after eating and go away shortly thereafter. Month over month the pains got worse. I thought it was nothing and didn’t mention it when I saw my surgeon in early April a couple days before my official 1 year post op date, at that appointment he gave me a conditional release. An “only when you need to come back” kind of release. Two weeks later I wound up in emergency in excruciating pain, with follow up for an ultra sound to find out what’s going on.

Results came back that I had gall stones. “YAY” I saw my surgeon again shortly after that and was scheduled for surgery #2 in early July. I had experienced a few more attacks between May and July and had been hospitalized again shortly before surgery on July 4.

I had a really difficult time pain wise with this surgery and more so than my TG. I got in many hours later than expected, it was completed laparoscopic and again just like the first one took longer to complete than normal but this was due to adhesions from my total gastrectomy. Even though it was supposed to be a “day surgery;” I spent the night in the hospital with severe nausea and pain. I continued to require pain medication for a few weeks after, which I wasn’t expecting as I thought having your stomach out was a way bigger deal on your body for pain wise. I went back to work after being off for 2 weeks and was only back to work for 4 days when I had an attack that required an ambulance trip to the hospital. I was in so much pain there was no relief, sitting, standing or laying down was awful. I couldn’t breathe and was in agony. Good thing they carry good pain medication in the ambulance!

I was in the hospital again for 5 days. Due to the lack of a stomach they were unable to go in and look at my bile ducts with an endoscopy so I was scheduled an MRI. This occurred on the 4th day of my hospital stay. Unfortunately, by this time there was nothing to see, but the assumption was that there was a left over stone that wound up in my common bile duct. It had blocked the duct and messed up my liver enzymes and made things a total mess for me.

I didn’t realize how terrible I actually felt until after my gall bladder was taken out. I was lethargic, cranky and sick/sore feeling nearly all the time because I was trying to gain weight and put some meat on my bones and eating a lot of fatty foods. All in part due to the lack of absorption of fat. Now things are much better, I am able to get a better nights sleep, and no more annoying pain. Plus I can eat fatty foods again (even though the absorption factor isn’t any better – if not worse.) It’s clearly not helping much, in four months after surgery #2, I had only gained back 3 lbs.

I know that my food intake calorie wise has not been great, I am going to have to start counting again. And with Halloween just passing I am eating a few too many of those little chocolate bars (along with enough protein to counteract the sugar.) Keeping on a strict diet for me is difficult as I am not a Sunday food prep person, or good at meal planning for the whole week. I want to eat healthier however, the expense of it all is hard to swallow (bad pun I know…)  I need child friendly meals, and things to shake it up a bit. Any recipes or cook books for low calorie and high protein meals that are simple and delicious I would appreciate.

I do know that in the last year I have gotten an intolerance to MSG (not that it’s very good for one anyways,) but I really miss Vietnamese food, eating McDonald’s (once in a blue), and Chinese food as well. Sometimes I indulge myself, but try not to eat too much to really upset my system; or not expect too much from myself either.

With this mutation that also causes Lobular Breast Cancer as well I have been going for mammograms and MRIs every 6 months to keep an eye on things. A month after my regular mammogram in December 2016, I had blood coming from my left nipple…great and there goes my nerves. It came on Sunday and I had it looked at Monday. My family doctor gave me that worried look so naturally I am freaking out on the inside. I had a ductography 2 times because the first wasn’t successful and there is a growth deep in the duct. Not great!! I met with the same surgeon that my Mom had at the beginning of March and am now scheduled for a ductography with blue dye so they know where to look when the open me up for the ductal excision later in the day on March 30. Good thing they move quick to make sure that they investigate what is causing the blockage. My pre-op call was this afternoon, but it hasn’t helped keep me sane. I am now 1 week away from my third surgery in 2 years…yay more scars, possibly more pain and more healing.

When can this SH*T be over with, I am getting really tired of being tired. I am tired of my body throwing me curve balls and not letting me go on with things. Here’s to hoping (crossed fingers, toes and everything else) that it’s benign and nothing to be concerned about! (Update to follow) hopefully sooner rather than later… I will also try and touch on my food intake and hopefully I can find some ideas to make things a bit easier for me.

Thanks for listening/reading! Have yourselves a fabulous evening.


5 Months Post Op

I am 5 months today post op. The last 5 months have been the shortest and longest at the same time and they have not been without their struggles.

I have been feeling much better in regards to being able to eat without having food stuck and having to go to the bathroom at every meal. That has been such a relief. I have not been eating as much as I should be due to work limitations and I have had some taste bud issues over the last week or so and everything I eat tastes gross. I am trying out some new things to eat on a regular basis like chicken salad on crackers, new protein shake ideas. Right now I am not doing my self any favors. It’s been a lot better than it was and I have been trying many new foods to increase what I am able to eat and hopefully gain a few new options. I know that I need to do better, I am trying but there are days where I am struggling with everyday life and that doesn’t help at all either as I don’t get close to my calorie requirement of 1800 each day on the bad days. I find I am extremely tired physically and emotionally from work in the evening and don’t have to energy to make lunches and end up not bringing enough to work. I am down a total of 32.5 lbs so far, which is about 22% of my original body weight and still due to lose about 12 more lbs.

My vitamin and mineral levels so far have held stable and the b12 sublingual tablets are working well. Happy dance for no shots!

We are trying to live each day as there are not many left enjoy each moment and make the most of it. Trips out to the Rocky Mountains to hike the trails and see the beautiful sights. This winter will probably not allow me to get back out on the ski hill but there are other activities that I will be looking forward to doing like skating and maybe a hike during the warm chinooks we get so frequently.

Over the last 5 months I have realized many things; I have not been treating myself very well, I am not making the most of my life, I need to branch out, be happy and do more for myself. I need to take chances with life and that is just what I plan on doing. This process has enlightened me and it has given me that sense of morality that I previously hadn’t discovered. Thankful is not enough to explain how I feel about everything that has transpired over the last two and a half years.

I wish you many days of happiness, health, love and laughter!

Home Sweet Home

I want to start off saying sorry for the disjointed last post, being in a morphine fog will do that to one…

Well I am finally home; after 14 long days of being in the hospital I can finally get back to some semblance of a routine.

Last week was pretty tough, I was able to move from clear fluids to pureed food easily on Tuesday though Thursday, but on Friday they moved me to a post gastrectomy diet. Needless to say that didn’t turn out well. I ended up wretching Friday night going to bed feeling some what better but on Saturday morning after toast (which was tolerated well on Friday) the pain in my upper abdomen grew exponentially. It was cold sweats, tons of pain, and general uneasiness. I was in rough shape, lost all colour and thought that I couldn’t take it any more. I have NEVER been in that much pain in my life.

I ended up having a CT (in which I think I got 250ml of telebrix down instead of the 2L they gave me) and x-ray that night, showing inflammation in my new connections, which was the cause of not being able to get anything down. I was put back on no intake of anything for another couple days to allow the swelling to go down.

On Tuesday they let me start back on clear fluids which went good, since nothing was vomited up. *Happy Dance* Wednesday my Doctor bumped me up to full fluids and advised that’s what I would be on for nourishment for 2-3 weeks to allow continued healing.

It was nice to be sent home on April 29, it was happy though emotional because of the few crappy days and the compassion and warmth the nurses and nursing assistants showed during my stay.They do such a tough job and cannot be praised enough for what they do every day!

I had enough stamina yesterday to go to the grocery store after being released and picked up what is needed for the next few days, no sugar added ice cream and popsicles, broth, canned soups, yogurt, juices, protein drinks (so far the only one that I found that’s tolerable and doesn’t make me want to vomit more is the Carnation Breakfast Essentials – Chocolate) pudding, and apple sauce. I have a new appreciation for looking at the labels, because prior to this I really didn’t! It’s so important without a stomach that you get enough protein and watch closely your sugar intake.

The next two weeks until I see my surgeon I hope will go fast. The liquid diet will be difficult to reinvent each day and make sure I am getting enough calories, protein and other nutrients to prevent extreme weight loss and lack of energy.

The first day so far hasn’t been too bad, made from scratch cream of potato soup (that we had to blend to smooth) with my mom and relaxed. We will see what adventures the next week brings.

Wishing you all happy and healthy days!

5 Days Post Op

Well it went off without a hitch and I was in my room around 6 pm. 

The epidural is only working on the right side but the pain management team here is taking good care of me. It’s only been at a 2-3 level. On Friday, the day after surgery my pain pump stopped working, those were nearly the worst couple hours of my life! I was so close to tears and was exhausted the entire day because of this. I still got up 2 times and walked on Friday. 

Saturday was a much better day, had a few visitors walked the halls 3 times and my pain pump didn’t crap out. 

This infor is TMI for the men but I felt would have been good information Prior to getting in here…I didn’t realize that surgery could make a lady have her monthly cycle early..not great! 

The hydro morphone makes me itch and meds can be given every 2 hours to my relief. But it doesn’t really help that my incision is starting to itch like crazy! 

I have been walking but not enough sometimes it’s really important that as the days go on you are walking every couple hours to ensure bowel activity stays. 

Today I get my swallow test and hopefully start with a liquid diet then tomorrow epidural and catheter out (which is super annoying for me because I have never had one before) but YAY!!! 

I was really scared about pain after the surgery, and how it was going to cope. But it’s been not as bad – everyone eesponds differently to pain and meds but I am glad for the ease. I Feel quite tight throughout my belly sometimes and it’s uncomfortable but not unbearable. 

Be prepared to be woken up every hour for the first night (the nurse practically stays in your room until morning) and so long as everything is going okay it drops down to 4 hours after that. It’s usually clockwork they come in (and if you are what I call lucky) you might wake up right before they get there. 

Well it’s tiring you will spend a lot of time in bed but again make sure you are getting up 

The incision


my coworkers bought me puzzle doesnt fit on the try but its a difficult one


My coworkers are amazing they sent me off with some games, cards from each of them, puzzles and a doctor who blanket and pillow. Also some nail stuff for at home. I had a great day on Wednesday because of them! 

Will update with the swallow test results and getting back to eating. 

Have a great day!

Tomorrow A New Chapter Begins

Well tomorrow is the day, I will be admitted at 6:00 am to have my surgery completed and start this new chapter of life.

Today was a difficult day, but made so much better by my lovely co-workers.  They made me a geeky basket including a Tardis blanket and pillow, the Harry Potter movies, puzzles and activities and a wonderful cake as well. It was quite touching and their support is so amazing, my day wouldn’t have been as great without them.

I had my last junk foody meal today – a burger and fries, needless to say I got my fill of the foods I wanted to eat over the last couple weeks.

But I’ve been a bit anxious and was up at 3:30 this morning, it’s bed time now as we need to be up at about 4:45 to be out of the house on time.  Good thing traffic won’t be so bad first thing in the morning.

I want to thank each and everyone of you for your support over the last few months, I greatly appreciate it! May you all have a wonderful weekend and I will post as soon as I am out of my morphine fog.


It’s a Date!

Well, the big day has been set…April 13, 2015.

I received the message when I got home from work a couple weeks ago and immediately thought “this just got real!!” The only good thing about this being prophylactic is that I get the choice of when, so it can fit well with my schedule. April/May is a good time in Calgary, it’s warmer so I don’t have to worry about traveling somewhere to walk inside.  The neighborhood we live in has many walking paths that are easily accessible, with or with out an incline so I can get out and about during the day.

The last couple weeks have been very emotional for me, and I think it’s the accumulation of everything. Having to plan and make sure that all the bills are paid, some dinners are made to make Rob’s life easier during that time so he can bring Chloe to the hospital as often as possible and trying to sort out my Short Term Disability with my employer. I have recently become aware that I am OCD about planning with financials and getting things taken care of around here (this does NOT make things easier). I know that this is going to be extremely hard on Rob and Chloe while I am away and I want to make things as easy for them as I possibly can.

Well, the count down is on…10 weeks. All of the stories I have heard/read have been extremely inspiring and have really put a lot of my fears at rest as you have all done well so far. All we can do is hope for the best; keep active, healthy and strong!

I keep you all in my thoughts and hope that everyday is good to you!

The Never Ending “Screening” Rollercoaster

On May 21 I had my MRI breast check which was normal except they looked at my liver and found a “likely to be nothing” hemangioma. I went for the ultrasound on July 7 to check the spot just to check; but alas they found nothing, the little bugger was hiding (good thing these are normally nothing)  It just creates all kinds of worry in my head, I’ve also had my fourth endoscopy on the 14th.  Always a bit nervous going into these, because you never know what they are going to find. Plus, the only stay that I have had was 2 nights after the birth of my daughter.  Not a big fan of the hospital thing.

This time I went into this endoscopy more relaxed  than I was for the last three, and Dr B felt that as well.  They gave me extra drugs this time so I didn’t wake up during the procedure. I didn’t thank goodness, plus the 15 hours of sleep for the rest of the day is always nice. I was sure glad I was able to take the next day off as well to get my bearings together. The only other thing that absolutely irks me is my inability to eat anything acidic/spicy/heavy for 3-5 days after; love those Arrowroot cookies, buttered bread and soup.  But it’s only a few days and it really truly isn’t that bad.  I know my aunt had issues with her endoscopy as well with the stomach healing from the biopsies.

Let’s hope I don’t hear from the doctor in the couple weeks and I can go on my merry way until I need to see the Mammogram folks in October. We are heading into year 3 of screening and my anxiety has greatly reduced.  I’ve also noticed that my activity level definitely helps keep my emotions in check and keeps those negative thoughts away.

I have been doing a lot of running lately, no so much to lose weight but to get fit.  I think that going into to surgery with more active lifestyle can only benefit me more recovery wise.  Plus, a co-worker and I are doing the Run-or-Dye 5k in a little over a month (I need to get my butt in gear).  I was on a roll for a while getting out a few times a week running or walking but the air quality in the city has sucked for the while due to multiple forest fires in BC, Northern Canada and here in Alberta. Needless to say the sinuses don’t appreciate the abuse so I won’t be enjoying the outside when I go for my next workout until that clears up and until I have more energy and can eat more again.

We all need to remember to be good to ourselves, eat healthy, exercise and stress less about yesterday and tomorrow; embrace today and reach for your goals!







The support that I see mounting around this group that has CDH1 is phenomenal.  Everyone is so very supportive of each other and it’s good to hear everyone’s experiences with Doctors and health facilities and their recoveries.

It’s nice to hear about the trials and tribulations of the recovery and what I could possibly expect.

My fourth endoscopy is in a month, I see many people getting their first and a malignancy is found. I feel for each one of these people that not only have they just found out about their genetic mutation that they right away have to jump into getting their stomach removed.

I don’t know if it’s normal or not but waking up in the middle of the procedure thinking that my esophagus is going to be ripped out is excruciating. Slowly waking up hearing the doctor, getting panicky and falling back in to la-la land. It’s always an adventure, but at least I get 2 whole days off work and I am taking control of my health.  You’ve gotta see the bright side of things every day. Live one day at a time and enjoy every minute of it.

My Auntie is the next in our family to get the surgery, it wasn’t supposed to be until the end of next month, but it was moved up to Monday next week.   It has been a while since we have gotten together as she doesn’t live in town. She and my Uncle came down this past weekend to have a big turkey supper before the big day. I realize I need to make a better effort to visit with family no matter how far you need to go.  They are so important and such an amazing support system.

Please find it in your heart to say a few good words for her while she undergoes surgery on Monday.

Hoping all of you out there are doing well if you are recovering, getting treatment or making tough decisions. Stay strong, empowered and keep your chin up!