Category: Stories

10/26/2017 – Endoscopy Scheduled

It’s been Five days since my last workout (Ironman 70.3) and I’m already feeling gross from eating way too much and not being active. I’ll try a work out later today.

72 days left

I met with my Boss and his Boss and they were both extremely understanding and encouraging when I told them about HDGC and the upcoming surgery. It appears my work is amazing about these types of things. It was a unique conversation. I’m like, “Hey – they think I might have cancer, but they can’t tell, so instead, they want to remove my stomach so they know for sure”…..  However, like I said, my company has been amazing about it.

My Endoscopy is scheduled for 11/22/2017.

My mom’s Endoscopy and Biopsies came back “clear”, however they said they noticed an irritation on her stomach which is most likely caused by stress? :\. That makes me a bit nervous. She is working to schedule a surgery date after the holidays. She has identified a good doctor in St. Louis (information below). I’m extremely thankful for NoStomachForCancer.org as they helped my mom and I find doctors/surgeons with experience in HDGC/CDH1 Gene mutation patients. Here is a note from Dr. Fields:

“We have an active program in prophylactic gastrectomy for CDH1 patients.  I would be happy to see her and discuss and I have performed many of these surgeries.  Also, we see many patients from Springfield and can assist with logistics of travel and pre/post-op care.

If you want to discuss with her and let me know if she wants to come up here.  We will then contact her and her current providers to review records so we can get any additional testing done here when she sees me to minimize visits.”

Ryan Fields, M.D., F.A.C.S.

Associate Professor of Hepatobiliary, Pancreatic,

Gastrointestinal, and Oncologic Surgery

Associate Program Director, General Surgery Residency Program

Director, Resident Research

Department of Surgery

Barnes-Jewish Hospital

Washington University School of Medicine

660 South Euclid Avenue

Campus Box 8109

St. Louis, Missouri 63110

 

10/21/2017 Ironman 70.3 Wilmington, NC 2017

We have a rough draft of who is staying with us in the hospital/hotel for recovery, and who will be keeping the kiddos.  We have great support from family and friends. Also, work has been a huge blessing as I’m able to take short-term disability for the 6-8 weeks (hopefully) of recovery.  Getting the endoscopy scheduled around the holidays has been a challenge. Still working on that. Some places are booked two months out. It’s crazy.

Ironman 70.3 Wilmington 10/21/2017:

The Ironman 70.3 in Wilmington NC was absolutely amazing.  It was a tough race, but an incredible experience. I had been training for most of the year and it all ended with a 1.2 mile swim, 56 mile bike ride, and 13.1 mile run. My time was 5 hours and 37 minutes. I was 52 out of 100 in my age group. Certainly nothing incredible from a time standpoint, but I was very happy to enjoy the race and complete it without issues. The weather was amazing, the crowd and volunteers were perfect.  The Ironman brand knows how to put on a great race. It will not be my last, but it will be my last with a stomach.

 

 

10/19/2017 – Tired but need to talk

My wife and I feel there are not enough hours in the day to talk through the amount of logistics and details for the upcoming surgery (1/6/2018).  We have three lovely kids (ages 7, 5, and 2). They take after their daddy (me, duh) in many ways.  Two ways they are like me: (1) awful dad jokes (I mean amazing dad jokes) and (2) super high energy.

Logistics:

Hotel for 2 weeks(ish)

Flights to NYC

Who is staying with my wife in the hotel (my recovery room is a shared room and doesn’t allow overnight visitors)

Who will be keeping my lovely three children for two weeks? (This is probably the biggest challenge).

Will they have cable so I can watch the Chiefs play? (Jk, but seriously..)

Thus – when the kids are awake, my wife and I can’t really talk about serious life issues like removing an organ so I don’t get cancer.  Those conversations have to come at 8:00 pm when the kids are asleep. But then – we are so tired from our day. (She homeschools and I work a technology/software sales job).  We make it happen though. It’s hard, and every night we feel like we are overwhelmed. I keep reminding us both, let’s make small steps every day.  79 days left.. oh boy.

 

 

10/18/2017 – Pre Ironman 70.3

Life and circumstances are changing quickly. Since last week, we spoke to arguably the best surgeon who specialized with HDGC (Sam Yoon from Sloan Kettering in NYC). Thankfully, the hospital is in-network so I was able to book an appointment directly with his office. Thus, I have an appointment for a prophylactic total gastrectomy for Jan 6th, 2018. That’s 80 days away. Which doesn’t seem very far from now. I have to get an upper endoscopy in November and I’m praying the results are negative and Dr. Yoon can proceed as planned.

I felt really good after speaking with Dr. Yoon. As of last week, he has conducted 51 HDGC prophylactic total gastrectomies and countless TG’s from cancer patients.  His results are very good and his name is referenced in nearly every HDGC documentation/medical guidelines I have reviewed.

People keep asking me, “how are you doing”?  However, I’m struggling to find emotions for this whole thing. I’m more in reaction mode as I feel I don’t have a choice other than to have my stomach removed. Thus, I have to take steps in the right direction.  I literally can’t imagine how I’m going to feel when I get in NYC and lay on the operation table. I have anxiety just thinking about it.

I also didn’t understand how expensive this whole thing will be. Airfare and hotel alone will be more than $3,500. It will also max out my deductible ($10,000) and who knows what else.  Again, I don’t have a choice.

On a different note, I’m competing in my first Ironman 70.3 event this weekend in Wilmington NC. It should be awesome and I’m sure I’ll have to push through some uncomfortable feelings to finish the race with a respectable time. (1.2M swim, 56M bike, 13.1M run). I’m going up with several friends from church.

Thanks for reading. This is going to be an interesting next few months.

 

10/8/2017 – Kiawah Island Triathlon

I just finished an Olympic distance triathlon at Kiawah Island, SC. My time was about 9 min slower than my goal but the waters (ocean swim) were super rough which made the swim very hard for me (motion sickness). The bike part was great and I improved from last year. The run was brutal as the heat was 90ish degrees with 95% humidity. So, the heat index was 101. I just couldn’t run fast without feeling like I was going to pass out.

Last week was bizarre. That is the only way I know how to explain it. I felt a strange peace about the genetic testing so when the Genetic Counselor (GC) told me I tested positive for CDH1 Gene Mutation, I didn’t know what to say.  I also had been telling my wife, Melissa, to not read up on CDH1 Gene Mutation as the information out there was scary and we didn’t need to rush into knowing anything until we found out if I was positive/negative. I thought that was a good plan, but maybe not. Now she is playing catch up but seems to be in great spirits.

We have an appointment with the surgical oncologist on Wednesday, which I’m happy I didn’t have to wait long. I did learn through a connection that he does have at least one experience with HDGC and CDH1 Gene Mutation. That is important as I start this journey because HDGC is not common so I want to get advice from those who have seen it the most.

If you want to learn more about HDGC and my CDH1 Gene Mutation, you can learn more at the page called “Learn about HDGC” at the top right of this website.

Thanks for reading,

 

Introduction

I’m married with three wonderful children. At the age of 32, I found out my Mother was a carrier of a rare gene mutation in her CDH1 Gene.  It was the same gene mutation that caused stomach cancer in three of my mothers family members. Being a carrier of this gene mutation gave me an 80%+ chance of developing stomach cancer.  On top of that, once cancer is formed, it’s extremely hard to detect and almost always fatal.

I was given a choice: 1) monitor the situation and get scans/scopes/biopsies a few times a year to try and “catch” cancer early, or 2) have a prophylactic total gastrectomy (total removal of the stomach).  The end goal: Live a very long life.  I didn’t like either option, to be honest, but option two seemed to have the best chance for me living a long life. It is also the recommendations of doctors familiar with this disease.

I created this blog to document my journey. Others in my situation have done the same, and I found it very encouraging as I tried to learn about my disease.  I’m hopeful I can pass the torch. I’m having surgery January 6, 2018. Wish me luck!