Three Years! – Obviously a 3 year update…

Today marks three years without my stomach.  On May 23rd, 2014, I said farewell to my stomach…never to be seen again.

What can I say about three years without my stomach.  I’ve become happier, wiser, and more balanced.  I put my priorities in things that matter in life – health, family and friends, and fun.  Although this video looks pretty staged, I really like the message within and it sums up how my life changed after I dodged the stomach cancer bullet.

 

In terms of my weight, I have been sitting at 119-120lbs for the past month.  I’m now 5lbs off my pre-surgery weight. My summer shorts from last year, don’t fit anymore.  It’s weird to say that I’m actually happy about that.  Who says that?!?!

My energy level continues to improve.  The body is an amazing machine, if you push it a little bit at a time, it will adapt.  Look at Marne and Steve who are completing feats that even those with a stomach don’t achieve.  Amazing.

As for eating, I continue to push the envelope on what I can and cannot eat. Sometimes, you just want to eat something so you do it. You regret it later but the brain is a funny thing…give it enough time and it forgets the pain and you do it again.

The other day I watched the recorded, “Spotlight on Gastric Cancer” that was held in Seattle this year.  My mom and I went to the first annual one in Philidelphia and hope to attend another one in the future as it is a great opportunity to network with those in the CDH1+ community.

During this presentation a question was asked, “What sorts of things do you wish you would have known about at the time, or what kinds of things have you learned since that you wish you had the knowledge about from the beginning?”  It brought back a lot of early recovery memories and I thought it would be helpful to give my two cents.

>  If at first you don’t succeed, try, try, again.  Food is scary after you’ve had your stomach out.  You know, even 3 years out…some foods are still scary.  During my first year of recovery, I couldn’t tolerate sugar well.  Now, I can eat it in moderation (i.e. a full cookie, a small piece of cake, small portions of freshly baked breads).  I’ve had great success stories and some not so great ones.

>  Make sure you are mentally strong and have a good support network.  One thing about this CDH1+ mutation is that it really plays with your mind.  It’s great to have people to bounce ideas off of.  Having your stomach removed is like 10% of the recovery game, the other 90% is the mental component.

 >  if you don’t have anyone to speak with, you can reach out to the no stomach for cancer community, genetic counsellor, and social media

>  Facebook: CDH1 Mutation GeneSupport group for partial and total gastrectomiesStomachless Living Support Group – Support For Full & Partial Gastrectomies

>  Test your body. Push it a little and see how it responds.  A little bit of pushing will go a long way.

>  Go to a centre where they are well versed about CDH1+ as well as the prophylactic (curative) total gastrectomy.   My genetic counsellor as well as my surgeon are all within the same hospital network.  I continue to be followed annually.

>  Probiotics.  They have been a game changer for me over the past 6 months.  I think I was lacking something and now I’m afraid to stop taking them. I’ve noticed a great gain in energy since I started. On the same note – take your vitamins.   B12 deficiency is real and can have long term health consequences if your levels aren’t maintained. Also monitor your iron, calcium and vitamin D.

 

I’m sure there are a lot more other tips but I don’t want to drag this post on and on.  The past year has been even better than the previous two years. I am excited to see what this next year will bring to the table!

 

 

 

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!