Category: Journal Entry

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.

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,

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!

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

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.