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1/14/2018 Two Weeks Post Total Gastrectomy

Week 2:

Things are going pretty well. I feel really blessed by all the support from my friends and family. The pathology report came back and it showed cancer had already formed in my stomach. Stage one and the tumor was “poorly differentiated” which means it was very aggressive and unpredictable. I can’t really explain how grateful I am. The tumor didn’t go through the stomach wall, so that is a huge blessing and I will not need further treatment. God is good.

Regarding the recovery, here are few things that I didn’t know about which are important to note:

My back is very sore. Because my abdomen muscles have been cut in half (open surgery) I mostly rely on my back to sit up straight and walk and whatnot. So my back constantly hurts. A heating pad and frequent breaks help a lot.
Food and drink require much planning and it’s very involved. Things like a protein shake make me bloated and gassy but I try and push through because protein helps the healing process.
If I forget to chew the smallest bit of food, it gets stuck somewhere in my esophagus/intestines. That is painful and scary. It feels like I can’t breathe. It lasts for around 15 minutes.
Don’t eat too fast and don’t try sugar in the beginning. I ate my oatmeal too fast and had a tablespoon of brown sugar and I had dumping syndrome for 3 hours. Really bad cramps. Never felt anything like it. Nearly went to the ER.
Sip your liquids. Do not take a big drink or gulp. (also results in dumping. Horrible cramps).

Favorite foods (everyone is different):

Peanut butter

Eggs (poached or scrambled)

Potato soup (just go slow). Heat ¼ cup at a time so you don’t overeat and it doesn’t get cold.

Gluten-free mac and cheese

Gluten-free Oatmeal

Gluten-free pancake with Nutella

Pure Protein Shake

1/7/2018 – One week Post Total Gastrectomy

Sunday
7:30am
They are switching my epidural medication because I’m still in a lot of pain. Hopeful they can manage the pain without making me dizzy.

8:30am
Finally starting to feel better. Praise the Lord. Last night sucked so much.

9am
With help of an amazing Nurse Tech (Jaunito), I was able to get out of bed. As soon as I stood up I coughed up something awful. That hurt but I feel like I can breathe again. I made it 1/4 a lap before nearly passing out. They used a wheelchair to get me back to my room. Feel pretty bad and weak.

10am
No water until Wednesday so I just chew on ice chips then spit them out. It’s kind of strange.

3pm
I made it four laps! Felt good.

8pm
The family left and I did another 4 laps. So 1/2 mile total. Feeling good and tired.

10pm
They gave me some extra medication for a headache and I think I might actually sleep a bit.

Monday
5:30am
Slept pretty decent. New meds are working much better. Also – the night nurse was awesome.

8pm
Same old thing. Made it 20 laps today total and progressing on schedule.

Tuesday
5:30am
Sleep was ok. I’m realizing the hospital bed is not helpful for my back.

10pm
25 laps total today. Things are a bit boring, to be honest. I can’t eat or drink and walking is only so cool. Plus – It’s hard to walk because I’m on the cancer floor and a lot of the patients are in much worse shape than me and they have to talk too. So it gets crowded fast and sometimes it hard to see all the struggling patients and their families. Breaks my heart. I’ll try and do laps early morning while the traffic is clear.

Wednesday
9am
Leak test day!

They immediately thought I had a leak, which was devastating news. However, after waiting to speak with the doctors for four hours, it turns out that I had a partial collapse lung which caused the images to be inconclusive. Phew. That was a rough 4 hours of waiting.

I get to take sips of water. I literally took a sip every 15 minutes for the rest of the day. Feels weird and I feel full.

They took the epidural out and the new pain meds didn’t come for a while. So – I was hurting pretty bad for a few hours. They dialed it in around 10pm and I slept like a baby.

Thursday:
Poweraid, chicken broth, and jello. All went pretty well. Jello tasted amazing.

Friday:
Discharge day!
I had some eggs this morning and I took 9 bites in about 30 minutes. Decided to stop and not overdo it. Felt good! I chewed more than I have ever chewed.

Discharged around 6pm.

The entire team at Memorial Sloan Kettering was amazing. Dr. Yoon, Dr. Bartlet (his fellow), and special thanks to the following nurses: Nicole, Shirley, Juanito, Martin, Love, and the others who I can’t remember. They were amazing and made the hospital stay much better.

Saturday:
It’s freezing in NYC. Like 12 degrees with 20 mph winds. After walking a few blocks to get food I needed a nap. Following the nap, I told my wife we are leaving tomorrow (Sunday). We were supposed to stay until Wednesday but I don’t think I could. We were so bored and we miss our three kiddos.

1/6/2018 Surgery Day

Arrived at the hospital (Sloan Kettering) at 5:30am and things went rather quickly. Everyone has been sweet so far. The Doctor gave me some medication to take at mid-night which helped me relax and it sure did. I felt really tired and relaxed.

Saturday
6am
Epidural. I was worried about this. I nearly passed out when my wife got the epidural for the birth of our first child, but the medication helps a lot. I remember leaning forward on the table, and that’s it. ?

11am
Surgery went well and lasted a little over 3 hours. I don’t really remember talking to my family but I suspect my jokes were still great.

1pm
Recovery. Strange feeling looking under the gown and seeing my new wound and other things that go on during surgery. Pain meds seem to work well. I have a bit of a sore throat my chest hurts from where they did surgery. I’ll try and rest.

6pm

Chiefs lost in the playoff. They played a horrible 2nd half. 3rd year in a row we lose like this.. bummer.

6:30pm
I really want to talk but I tried to sit up and it hurt very bad and almost made me sick. I’ll try tomorrow.

7pm
Feel nauseous so they decreased my epidural by 1/2 (found out the next morning).

10pm -7am
Spent all night trying to figure out how to sleep. I was in a lot of pain and not comfortable. I don’t know what to do….. I pray this gets better.

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