- 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.
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):
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 pancake with Nutella
Pure Protein Shake
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.