It only seems fitting to be blogging today. I wanted to be sure I blogged on the 6th month anniversary of living without a stomach. It’s been a whirlwind of an adventure mentally and physically. Even though it has been only six months post op, it really has been over a year’s journey and I wanted to recap for some nostalgia. I have done a lot of growth over the past year and I continue to learn more about myself as I continue to recover.
I also wanted to recap for those new joiners to my blog (thanks again for following!). Reading back through some of my older posts, I was reminded about how stressful it was between Oct 23rd, 2013 – May 23rd, 2014. I like to move forward and not backwards so I had forgotten about how stressed I felt. For those who are at risk or know that they are CDH1 positive – this may also help for as timeline if you are reading through my past blog entries. You’re not alone. I didn’t realize there were over 80!!
Oct 23rd, 2013 – The day after my 29th birthday, Brandon and I met with the genetic counsellor in Toronto to discuss being tested for the CDH1 genetic mutation. This decision was not an easy one but in my mind, it was necessary. This is a whole blog post in itself and I plan to write about making the choice another day.
December 6, 2013 – News was delivered from my genetic counsellor to myself as well as my husband and parents that I tested positive for the CDH1 genetic mutation. A moment that has been engraved in my mind forever.
December 17, 2013 – First Endoscopy + routine biopsy performed by a gastroenterologist locally. First time explaining CDH1 to medical professionals. A surreal experience given that I have been healthy my entire life.
Jan 8, 2014 – Meeting with gastroenterologist to discuss results of recent biopsy. Negative. Discussed doing additional biopsies given the recent research. Gastroenterologist decides it is worth doing a repeat endoscopy + biopsy.
Jan 14, 2014 – Repeat endoscopy + biopsy performed locally.
Feb 5, 2014 – Embraced the snow storm and had the results of my endoscopy delivered. Signet ring cells found. Oddly feeling very relieved. Consultation set up with the gastroenterologist in Toronto who did my mom’s surgery.
Feb 12, 2014 – Meeting with the surgeon who performed my surgery and my mom’s. Filled out the paperwork to be scheduled for surgery. Got a CT scan instantly to ensure I was clear to go to Japan. Amazed with the medical system in T.O.
Feb 26, 2014 – Met with a fertility clinic to discuss CDH1 and possible invitro fertilization. A tricky topic!
March 19, 2014 – Pre-op appointment so I’d be ready to go into surgery if something opened up sooner than May 14th (1st surgical date).
April 12 – April 28, 2014 – Awaiting surgical date as my original date had to be moved. Stressful!
May 23, 2014 – Surgery! Goodbye stomach. See ya never.
May 23 – June 3rd, 2014 – Recovery in the hospital. Hospital food never tasted so good.
July 2, 2014 – First follow up post surgery – Lymph nodes negative. Officially Cancer free!! YAY! Discussed eating issues. Upper GI X-ray booked.
July 8, 2014 – Stricture discovered. It all wasn’t in my mind. Referral made to have dilations at another hospital in Toronto.
July 16, 2014 – Follow up with gastroenterologist. Weight continues to plummet.
July 17, 2014 – First dilation. I can eat again!!!
July 30, 2014 – Follow up with gastroenterologist. Cleared for lifting. Glorious!
Aug 5, 2014 – 2nd dilation. I can eat even better.
Sept 3, 2014 – Return to work! Yesssss!
Sept 24, 2014 – Follow up with gastroenterolgist.
October 10, 2014 – 3rd dilation. Right in time for Thanksgiving.
Which brings us to now.
Earlier this week I had another follow up with my surgeon in Toronto. I have been feeling really good over the past two weeks and felt this may be the last appointment with her. After updating the team about my improvements since my last dilation, the team decided that I wouldn’t need to come back for follow up for………6 months! Yes! Less doctor appointments means closer to normalcy.
The interesting thing about this appointment was that mom and I happened to meet another family with the CDH1 genetic mutation in the waiting room. It was interesting to meet another family with this since there are approximately 350 families affected with the gene worldwide (and more being identified). It makes sense that that would be the place to meet someone though since this surgeon performs many prophylactic (arguably curative) gastrectomies for people with the CDH1 genetic mutation.
I don’t want to jinx anything, but I have been able to gain two pounds since my last dilation. It’s been a while since I’ve had to spit up anything and swallowing feels almost like it used to before surgery. I now weigh 106.7lbs. I am aiming for 110lbs.
This Wednesday I am going for my 4th, and hopefully, final dilation. My surgeon’s office recommended that I also have a colonoscopy to screen for colon cancer since I’m going to be on the table. I’m not sure if this can be arranged that fast since I have had a hard enough time getting scheduled for my dilations. I’m also concerned about the prep for the colonoscopy because you have to flush out your system the day before the procedure. That for sure will lead to weight loss. Either way, I’m in no rush for that procedure (honestly, I’m not sure who would be). We will see what happens.
Other than that, I can now start seeing the light at the end of the tunnel. Once my stricture has been fully dilated, I will no longer need to worry about those appointments and hopefully will just need to follow up with my family MD to monitor my nutrition. I’m six months post op – I’m halfway there. I’m thankful to wake up and celebrate each day.
March 2014 pre-surgery (on the left) and Nov 2014 (6 months post op)
Cytosine Deleted - Life with the CDH1 genetic mutation 
Woooo! Way to go with the weight gain and also fighting through the dilations! You’re doing great and looking great! Appreciate the timeline on the past year, it’s crazy what happens in 12 months.
Thanks Steve!! Hope all is well with you too 🙂