Month: June 2018

6/21/2018 – Twenty-Four Weeks Post Total Gastrectomy

Ya’ll – I did another Triathlon.  Here is a picture of around mile 2 of the run.

June 17 2018 – Charleston Sprint Triathlon Race 2

This sprint triathlon is a 600-meter swim, 12-mile bike, and 3-mile run.

I hope you don’t mind the dorky picture. I get a bit loopy during these events.

It was hot and I couldn’t catch my breath on the run. I felt like I had nothing left to give.  I wanted to quit but fought through it. My goal was to post my best time ever but I came up 20 seconds short of my personal best. I DID, however, improve my time by 23 seconds from last race. I was motivated to fight for a personal best after I met so many sweet people in Tampa that encouraged me to keep improving and fighting to get better.  They told me it encouraged them seeing me doing triathlon and improve my times. The next race is July 29 and I’m already excited!

I’m trying to increase my training, while not losing weight.  It’s not easy. I weigh 161 lbs and my body fat has to be in the single digits. I weighed 202 prior to surgery. It’s pretty crazy. I don’t want to go any lighter because I know my training load will increase if I do the Ironman 70.3 in Wilmington in October.  I have until July/August to figure it all out – assuming they don’t sell out the event.

The Ironman 70.3 is exciting, but I’m hopeful I can also run a Marathon by the end of this year and hopefully a full Ironman (140.6 miles) in November of 2019. I want to use those events to fundraise for No Stomach For Cancer as they help fund research for CDH1 gene mutation.

I hope you will stay tuned and keep reading along as I figure this all out. I need to focus on staying healthy and fueled so I can keep training.

6/9/2018 – Twenty-Two Weeks Post Total Gastrectomy

I feel very blessed. I attended The Spotlight on Gastric Cancer event which was put on by No Stomach For Cancer and Moffitt Cancer Center.  I was able to meet many former cancer patients and several fellow stomachless friends.  It blessed me because we all have different stories, but we all have/had similar struggles.  I was reminded how difficult the “early days” were.  They had no rules. We all have those “crazy” stories. But – we are still here! We are happy, healthy, and full of life.  We have lost family members, but we are motivated to help others through the difficulties of this disease and live the best life possible.

I was also able to meet with several doctors and surgeons.  There are great people dedicated to learning and sharing their research to try and offer more treatment options for cancer patients.  I would guess, over 100 patients, former patients, caregivers, and professionals joined the event.  We heard from several experts in the industry. Topics covered were:

  • Laparoscopic Total Gastrectomy
  • A new technique where they introduce chemo during surgery. This seems to be very new and they are still doing research.
  • Immunotherapy
  • The importance of choosing an experienced surgeon
  • Pathology reports and techniques used at Moffitt
  • Diet and vitamins after a total gastrectomy
  • A theory that we should consider treating H. pylori prior to symptoms
  • Patient testimony

Giving Hope

I have a few conversations with people who read this blog. I never know who reads this, but they said it blessed them. I need to stay more involved with posting as I remember reading these types of blogs when I first learned I had CDH1 gene mutation.  Reading those blogs helped me prior to surgery and the first few weeks after surgery.  I’m hopeful I can be more consistent. If you need to reach me, you can always reach me on twitter. https://twitter.com/GoWithoutYoGut

Closing thoughts:

I met several strong, inspiring people this weekend. One impactful moment was listening to a mother who was diagnosed with stage 4 gastric cancer and was given a 4% chance of survival.  She fought through several (seven I think) rounds of chemo and radiation.  Not only did she make a full recovery; she had a successful TG.  And because she had the CDH1 gene mutation, her own two daughters, her sister and her niece, all of which were CDH1 gene mutation positive, had successful TG’s all within a few months. It was very special and inspiring to hear their story.

I also was able to meet a fellow stomachless friend who also suffers from celiac disease! That was cool. We exchanged numbers and I hope we can keep in touch as we share a similar journey.

Y’all are brave. I encourage you to share your story as you never know who it will encourage.