Category: Eating

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

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.