1/4/2018 – Travel to NYC

Today is the travel day to NYC from SC.

Welp – Charleston South Carolina received a rare 6-8 inches of snow yesterday. Bridges nearly everywhere have been closed. The Airport is also closed and looks to be closed for several days due to the lack of equipment to de-snow the runway. All flights out of Charleston have been cancelled through Monday.

10am
I’m having my brother-in-law take us over a bridge in his truck (he has a medical pass to help transport people in poor weather) and we are going to take my father-in-law’s truck to Charlotte and catch a flight tonight to NYC.

12pm
NYC is having Blizzard conditions. Many flights have been canceled.

2pm
Arrive in Charlotte and our NYC flight was cancelled. Rescheduled for tomorrow morning at 9am. I’m going to call the Doctor and see if we can have a later pre-opp meeting tomorrow.

2:15pm
Flights canceled tomorrow! Reschedule for Sunday. That will not work as surgery is Saturday. Dr. Yoon called me to do his Q&A over the phone so I can arrive later tomorrow for pre-op. (4:30pm appt).

2:30pm
Leaving our Hotel that we just paid for (I later called and got a refund) to drive to Charlotte Airport and speak with Delta about options. Thinking of flying to Philly then take a later train. Never done this before but hope to figure it out.

3:30pm
A very nice lady at Delta switched all our flights and we are heading to Cincinnati, then to DC in hopes to catch a train to NYC.

10:30pm
We made it to DC without issues! It’s like 2 degrees with 15 mph winds. Much different than Charleston weather.

10:45pm
Made it to the train station. Just missed the last train. Darn. Next train is 3:15am with a 6:45 arrival. I guess we are doing to stay at the train station and wait for our train. Tickets for 4 people was just under $500. 3 other trains have been canceled so praying we are not canceled.

12:00am
It’s cold in this train station. I have on all my winter clothes and I’m still a bit cold. This is my first train experience and it’s different than I imagined. So far – no canceled train but there are no employees around to get updates. I really pray we make it to NYC in time. Rescheduling this surgery would be very hard for everyone. We are going to one of the best Doctors who are very busy (Dr. Yoon) and my wife did a great job figuring who will keep our kids while we are away. Having to change or extend the trip would be very difficult.

1:00am
Running out of snacks and there are not many options Gluten free at 1am. I choose to go to MCD and get a bacon egg biscuit, but hold the biscuit. Tasted like MCD.

3:20am
Very strange experience, but we are on the train! They made us line up then once they opened the door, we had to talk like 200 yards to our train and it’s a big free for all. We are at the front of a section that has 4 seats. I’m getting excited!

6:am
Almost to NYC. This train is freezing and we sat by a light that is very bright. Also, I have no idea how people are sleeping on this thing.

6:45am
WE MADE IT! Wow. NYC is busy. First time to NYC and it’s living up to what I imagined. I saw a few things in the train station that I’ll keep to myself. (insert surprised look emoji) Let’s just say I’m dying to catch an UBER and get to the hotel.

7:30am
At the hotel! 22 hours of traveling. Boy am I tired! Going to take a nap before the pre-op at 4:30.

3pm
Awake and just got some Thai Food from Lucious Thai (Upper East Side). This is the best Thai Food I have ever eaten. Amazing. Also very hot.

7pm
Pre-opp took a while, but we are done. Now I’ll spend some time with family before arriving at 5:30am for surgery. Hope I sleep well. They gave me medicine to take at 12am to help me relax in the morning.

1/2/2018 – Happy New Year

Haven’t posted since last year… hehe

I’m 4 days away from surgery. It’s hard to explain how I feel. I know I’ll feel very cold because NYC is very cold right now so I’ll get to experience NYC in all its glory.

I feel ready for surgery. I have continued to run a few days a week to keep in shape. My weight is around 198. I’ll try and update everyone when I can. I’ll keep a journal so I can at least update in bulk when I recover.

Talk to you soon!

12/6/2017 The last 30 days

I’ll be traveling to NYC Jan 4th and have pre-op on Jan 5th with Surgery Jan 6th. Time is flying by and I’m unsure if I’m prepared for this. I have gained about 15 pounds as I have been enjoying food and adding some extra weight. Some patients lose 20% of their body weight due to the change of having no stomach so I figured a few extra pounds will not matter. It’s shocking how bad I feel while I eat a lot of unhealthy foods and gain weight. I’m looking forward to eating healthy again soon. I have great support from family and friends. I’m spending a week or so with my family in Missouri over Christmas and it should be a great time for rest and fun with the family.

Today, my Uncle is having a prophylactic total gastrectomy at St. Mary’s in Rocheste, MN. I’m hopeful he will make a full recovery. My mom is having surgery Jan 10th at Barnes-Jewish Hospital in STL. It’s great to have people around me that are doing the same process. I’m praying we all make a full recovery.

11/28/2017 – #GivingTuesday Success

Wow. My heart is full of joy and I’m very blessed.
The last few years I have supported a few different non-profit organizations during #GivingTuesday, where Individuals and corporations open their hearts and wallets on a national day devoted to giving back.  This year, I choose to support No Stomach For Cancer.
I shared my story with my friends on Facebook and Twitter and asked them to consider a donation of $10.00 to support www.nostomachforcancer.com, NSFC has been invaluable during this process. They have the best information and their staff has been great giving me the information I need. My goal was to raise $500 for the foundation.  My friends and family were so generous and ended up giving a total of $2,000!  You can see the page here: https://give.everydayhero.com/us/support-no-stomach-for-cancer-on-givingtuesday
52 total gifts for a total of $2,093.50.
 So many people blessed me by sharing their love and interest to help. A friend of mine will most likely start a Go Fund Me account of some sort because so many people want to help.  It will be a huge blessing because I suspect the total trip/surgery will cost between $15,000 – $20,000 WITH insurance.
It’s not easy for me to ask for help. Especially with finances. However, with such a large number of people asking to help, it makes it easier for people to make an impact with small gifts. Also – any gifts that will be over my need, will be donated to my Church or NSFC. If I get’s started, I’ll post it on here.
This was the message I sent on #GivingTuesday:

“My Story

I recently learned I’m a carrier of a rare gene mutation which causes Hereditary Diffuse Gastric Cancer (HDGC). HDGC is rare and very dangerous. In most males my age, the gene mutation is already creating cancer in my stomach that is undetectable until it’s too late for curable treatment. With my new diagnosis, I have an 80%+ chance of developing stomach cancer. I decided to eliminate the chance of dying from stomach cancer by having my stomach completely removed. I’ll be traveling to NYC to have a prophylactic total gastrectomy (total removal of the stomach) early January. My life and diet will forever change, but I’m thankful I have the opportunity to address this now, while I’m still alive.
No Stomach for Cancer (NoStomachForCancer.org) was the only organization that collaborated everything I needed to be well informed to fight this deadly disease. They have been available and extremely supportive. I believe No Stomach for Cancer is literally saving lives and working hard to further research so future patients have better options.
I will be very blessed and honored if you donate $10.00 or more during #GivingTuesday, where Individuals and corporations open their hearts and wallets on a national day devoted to giving back. Each gift, no matter the size, has the potential to save a life like mine.
All gifts go straight to No Stomach For Cancer Foundation. www.nostomachforcancer.org

11/14/2017 – Halls Chophouse

My wife and I went to Halls Chophouse last night to enjoy some high-quality steak since I’m unsure if I’ll be able to stomach it after the surgery. (See what I did there?). It was amazing as usual.

I can’t believe it’s 53 days until surgery. It’s approaching very quickly. I’m trying to prepare mentally and spiritually while enjoying food as much as I can.  I have come to realize I need to continue to exercise up until the surgery date as I feel gross when I don’t. So – I ran 2 miles today. Felt fine.

I have an endoscopy next week. Should be interesting. I’m sure the report will be negative as that is what they expect with HDGC patients.  It would be very bad news if it wasn’t negative.

I’m finally caught up on here, so the days I write should be the days I post. I hope I can keep it going.

See you soon,

 

10/30/2017 – Kicking off the Stomach Farewell Tour

Whoa. I went to a Halloween party at our neighbors’ house on Saturday night and ate so much I nearly became sick. I have been enjoying food these last few days, but perhaps I’m overdoing it. I might have to calm down a bit.

I keep telling my wife and friends I’m on the “Stomach Farewell Tour”. 68 days left

I finally got my blog/website up (you obviously know this), but I have been keeping my thoughts and updates via a notebook. As I listed in my “About Me”, the purpose for this blog is to document this journey and hopefully provide useful information to others as they might have to go through this or support family members who are doing through this. So – Stay tuned and I’ll keep it brief and informative. 😃

I’m going to eat some candy tomorrow. Last Halloween with a stomach!

 

 

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.