- My back finally doesn’t hurt anymore. I suspect it was because I couldn’t use my abdominal muscles much in the beginning because I had open surgery. Now that I’m healing, I have more strength and my back has less stress.
- If I eat late at night, I risk getting reflex when I sleep. I’m still sleeping sitting up because I get reflex if I lay down. It’s hard not to snack at night because I struggle with falling asleep and eating snacks seems to help pass the time. I’m trying to leave a 1-2 hour gap before I go to bed but it’s not easy. Work to do I guess.
- Protein shacks are finally going down well, which has helped stabilize my weight. I weigh 175 which is 22 lbs. from surgery day. Getting gluten-free protein is a little more expensive.
- Feeling a bit better each day. Energy levels spike and dive to near zero without notice, but that doesn’t bother me too much.
- Espresso. So – I used to drink 12 cups of coffee which was a habit I formed studying for my MBA. I slowly stopped drinking coffee before surgery to help with recovery. I still have no desire for coffee and more importantly, I do not have space. Instead of coffee, I sip on espresso. That has been a lot of fun and I like it. It has given me heartburn a few times, but nothing crazy. It’s nice to have something to counter my energy levels when they crash at home. Sometimes the kids want to play and I have to push through. So – Espresso helps.
Wow – 4 weeks feels good.
I started walking more again. As I approach 6-weeks post op and plan to run somehow. I started Monday with walking 1 mile at a 20min/mile pace. My belly felt a bit strange after one mile so I stopped.
Tuesday, it was beautiful outside so I walked 4 miles at a 20min/mile pace. Honesty, it felt good and time got away from me. I was actually sore at the end (in my legs and hips). After a stretch and a protein shake, I feel fine. After an hour, I needed a major nap.
I feel good enough to invest a lot of time reading. That has been sweet.
Here is what is new:
1. Mornings are still rough. Sore and just don’t feel like eating or drinking because of the soreness. I drink 8 oz of water (takes about an hour), then eat breakfast around 9:30am. I had two small gluten-free pancakes (they are very small) and a poached egg. It was great!
2. Eating is getting better but there are still no rules. The trick is to go extremely slow and chew more than you ever thought. I had gluten free quesadilla (a small triangle) and gluten-free hibachi with quinoa. It was great. Also – my taste buds are getting sore. Not sure why, but with keeping food in your mouth for a lot longer than I’m used to, my taste buds get sore and it hurts to eat.
3. I can sip up to an ounce of espresso. I like it and the caffeine boost is something I have only dreamt of! (Insert excited emoji)
4. Gatorade endurance has low sugar and doesn’t upset my belly. I can drink plain water but I can still see that Gatorade goes down better. The water feels like it gets stuck. Crazy.
5. Protein shakes are going down much better now. At first, they made me crampy within minutes. I tried to sip slowly and push through but now I know that I was trying too much.
6. I have to remind myself. Go slow, Chew more than I think I should, and stay patient. Food that didn’t work yesterday, might work today. There are really no rules as I adjust to the new life. But, my fellow CDH1 friends from around the US have encouraged me that the days get better and the beginning is hard.
7. Energy levels are getting better, slowly. But I still get hit with fatigue out of the blue. And it’s severe. Like – it feels like my eyelids weigh too much to keep my eyes open.
Pretty much eating any type of food now. Since I have Celiac disease, it has to be Gluten-free and I have not tried meat like steak and pork.
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.
Finally starting to feel better. Praise the Lord. Last night sucked so much.
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.
No water until Wednesday so I just chew on ice chips then spit them out. It’s kind of strange.
I made it four laps! Felt good.
The family left and I did another 4 laps. So 1/2 mile total. Feeling good and tired.
They gave me some extra medication for a headache and I think I might actually sleep a bit.
Slept pretty decent. New meds are working much better. Also – the night nurse was awesome.
Same old thing. Made it 20 laps today total and progressing on schedule.
Sleep was ok. I’m realizing the hospital bed is not helpful for my back.
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.
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.
Poweraid, chicken broth, and jello. All went pretty well. Jello tasted amazing.
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.
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.
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.
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. 😃
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.
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.
Chiefs lost in the playoff. They played a horrible 2nd half. 3rd year in a row we lose like this.. bummer.
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.
Feel nauseous so they decreased my epidural by 1/2 (found out the next morning).
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.
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.
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.
NYC is having Blizzard conditions. Many flights have been canceled.
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.
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).
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.
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.
We made it to DC without issues! It’s like 2 degrees with 15 mph winds. Much different than Charleston weather.
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.
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.
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.
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!
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.
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.
At the hotel! 22 hours of traveling. Boy am I tired! Going to take a nap before the pre-op at 4:30.
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.
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.
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.
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
Washington University School of Medicine
660 South Euclid Avenue
Campus Box 8109
St. Louis, Missouri 63110