Category: Journal Entry

6/9/2018 – Twenty-Two Weeks Post Total Gastrectomy

I feel very blessed. I attended The Spotlight on Gastric Cancer event which was put on by No Stomach For Cancer and Moffitt Cancer Center.  I was able to meet many former cancer patients and several fellow stomachless friends.  It blessed me because we all have different stories, but we all have/had similar struggles.  I was reminded how difficult the “early days” were.  They had no rules. We all have those “crazy” stories. But – we are still here! We are happy, healthy, and full of life.  We have lost family members, but we are motivated to help others through the difficulties of this disease and live the best life possible.

I was also able to meet with several doctors and surgeons.  There are great people dedicated to learning and sharing their research to try and offer more treatment options for cancer patients.  I would guess, over 100 patients, former patients, caregivers, and professionals joined the event.  We heard from several experts in the industry. Topics covered were:

  • Laparoscopic Total Gastrectomy
  • A new technique where they introduce chemo during surgery. This seems to be very new and they are still doing research.
  • Immunotherapy
  • The importance of choosing an experienced surgeon
  • Pathology reports and techniques used at Moffitt
  • Diet and vitamins after a total gastrectomy
  • A theory that we should consider treating H. pylori prior to symptoms
  • Patient testimony

Giving Hope

I have a few conversations with people who read this blog. I never know who reads this, but they said it blessed them. I need to stay more involved with posting as I remember reading these types of blogs when I first learned I had CDH1 gene mutation.  Reading those blogs helped me prior to surgery and the first few weeks after surgery.  I’m hopeful I can be more consistent. If you need to reach me, you can always reach me on twitter. https://twitter.com/GoWithoutYoGut

Closing thoughts:

I met several strong, inspiring people this weekend. One impactful moment was listening to a mother who was diagnosed with stage 4 gastric cancer and was given a 4% chance of survival.  She fought through several (seven I think) rounds of chemo and radiation.  Not only did she make a full recovery; she had a successful TG.  And because she had the CDH1 gene mutation, her own two daughters, her sister and her niece, all of which were CDH1 gene mutation positive, had successful TG’s all within a few months. It was very special and inspiring to hear their story.

I also was able to meet a fellow stomachless friend who also suffers from celiac disease! That was cool. We exchanged numbers and I hope we can keep in touch as we share a similar journey.

Y’all are brave. I encourage you to share your story as you never know who it will encourage.

4/24/2018 – Fourteen Weeks Post Total Gastrectomy

Hey Ya’ll.
Thanks for following. Things are still improving day by day.  I’m looking forward to increasing my training schedule as the summer days approach and hope that I will come with an increased energy.
I have lost a total of 34 lbs but I believe I’m leveling off. I try and get my calories in but it’s tough at work because I can forget to eat when I’m working.
Overall, I’m really blessed. I know people who have had such a worse time and all I can say is that I feel blessed. I don’t deserve the good health I have been given, but I’m extremely thankful. I do believe much of the success goes to the following:
  1. Faith
  2. Choosing an experienced Surgeon and going to a center of excellence
  3. Working with No Stomach For Cancer as they helped me through that process
  4. Family and friends.
For those readers wondering, “what’s it like 14 weeks out”, I’m still having the following issues:
  1. It’s hard to fall asleep most the time. This makes the next day pretty rough in the morning and especially in the afternoon. I struggle to stay awake starting around 3 pm, but then can’t sleep at night.
  2. Fatigue – mentioned above – but around 3 pm on my “bad days”, I feel like I can’t keep my eyes open. It’s like someone attached weights to them. It’s a bummer but I’m working on it.
  3. Reflux. Ugh.. will it ever end? It’s getting better – but still, have an episode once a week or so. I still have to figure it out. It’s happening with “normal/safe” foods.  I hope it ends soon.
  4. Fitness – I used to work out 5-6 days per week so I could compete in triathlons and other endurance events. The best I have done was 3-4 days per week and it was brutal. I have dialed it back to working out whenever I feel like it.  I lost so much muscle that when I work out now, I’m sore for at least two days. Thus – I’m trying to “ease” back into training but Triathlon season is only 4 weeks away and I’m still pretty weak. What can you do…
Talk to you soon!

4/7/2018 – Twelve Weeks Post Total Gastrectomy

My first week back at work went very well. The night before (Sunday), I had reflux from 2am-3am.  I was worried that it would make my first day rough as I didn’t sleep well. However, it went pretty well overall. I packed 5 granola bars and a few Gatorade (G/2 – which is lower sugar). Also – my company has a Starbucks on campus, so I was able to get 2 oz of Espresso once I got tired. I really like that. 🙂
I’m starting my triathlon training again. Boy, it’s not going as well as I had hoped. I get tired very easily and I’m sore for days after a tough day.  I also noticed that I get affected by colds/allergies/sickness much easier. For example, I have had “drainage” and a cough for almost 3 weeks. I suspect it’s because of my immune system isn’t as strong as it used to be. I wanted to come back this triathlon season and win races to raise awareness for No Stomach For Cancer and how much they helped me. However, at this point, I’ll have to race to finish, rather than race to win.  Oh well – maybe next year.
Lastly, last night I had horrible reflux. The worst ever. The taste was so bad I was gagging and dry heaving which kind of scares me since I have yet to vomit without a stomach. After it all settles down following some crackers and water, I have heartburn the following day and that awful taste in my mouth.  It’s a bit discouraging as I don’t know why it all happened.
I have a feeling that these things just “happen” with life after no stomach. I just hope it doesn’t happen very much.
Hopeful for a great week!
Connect with me on twitter: @GoWithoutYoGut

3/27/2018 – Eleven Weeks Post Total Gastrectomy

I know it’s been a while since I have updated.  I’m sure this won’t be the last time there is a large gap in time between updates.  Things have been going pretty well, however, for those of you who have done this know, no day is safe.
Blood sugar crash is much scarier. I feel weak and as if I have the flu. I become very slow in thought. I sweat and get hit with intense hunger.  I know that I typically need 15g-20g of carbs to recover and the ride will be over in 15-20min. However, I have the sudden appetite for 1,000 calories and 250g of carbs. I have to be very careful I don’t overeat during this time.  If I do, I get horrible cramps. It’s a mistake you will not want to make again.
Outside of those, I get reflux from time to time. The remedy for me is gluten-free crackers and a little bit of liquid.  Coffee during the day and water during the night.  Just be careful not to eat too much. Take small bites and chew like you just had surgery.  During reflux, it feels like everything get’s stuck in your esophagus so if you eat too much, it could be a bad mixture.  Eating during reflux seems counterintuitive but it has worked every time. So, along with my blood sugar management snacks, I now take some reflux snacks too. I’m basically always taking an entire days worth of snacks with me because I never know what the day will be like.
I had the kids at Wal-Mart the other day while my wife was meeting with a friend. My nearly 3-year old was being very energetic.  All the sudden, I felt really tired and weak.  I took a second to check how I feel. Yup, I’m sweating. I could feel my blood sugar was low. I suspect, the high sixties or low seventies.  I grabbed a Gatorade and started sipping. Before I left the store, I was on my way back to normal.  It was a bit crazy though. I forget that I’m in charge of my kids and I have to be prepared for these situations so I can stay coherent and keep the kiddos safe. I never really thought about it before.
I return to work on Monday. To be honest, these 11 weeks have gone by way too fast. I think it will be hard to go back but I feel like this is a step I have to take in order to get back to the new normal. I have lost a total of 33 pounds and it’s not easy to keep weight on.
Last night, my wife and I went out to eat at a restaurant that has a serious Gluten Free (GF) menu. The food and service were great! We were reflecting on this journey and there are parts of it that do not seem real. I can’t believe we did this and I’m thankful that I no longer have Cancer.  It was/is a tough journey, but it was worth it.  I know others who have had a much more difficult time with recovery. Thus, I’m very thankful. I feel as if God protected us and I certainly did not deserve it.
Wish me luck going back to work!

2/11/2018 – Six Weeks Post Total Gastrectomy

Six Weeks! I can start working out again…. hopefully.
I was told by Dr. Yoon I can run six weeks post-op.  My incision area is still a bit sore and tight so I’m not sure how running will go, but I would like to give it a try. I have been walking a good bit. My best walks thus far were one for 4 miles at a 19min/mile pace and one for 2 miles at a 16min/mile pace. Major napping needed after.
I’ll also start some light weights. I have lost a lot of muscles and do I don’t want to overdo it.
Here is what’s new:
  1. Low blood sugar: I had my first low blood sugar moment. I ate a poached egg, gluten free toast, butter and a strawberry. 1.5 hours later I notice I’m feeling weak.. Like I’m getting the flu. Then I start sweating. So I stand up and realize I’m super dizzy.  I checked my blood sugar and it was 59. The lowest it’s ever been. I called a family member who has T1D and she explained I needed about 15-20 carbs and it should last only 15 minutes. The problem was, I already had poweraid and some crackers and was at about 35 carbs.  The feeling did go away after 15-20 minutes but it wasn’t fun. Then, I got super hungry. Like – pre-surgery hungry. I couldn’t stop eating. I have no idea how I kept going. Eventually, I stopped. Good thing too because I did get some mild cramps.. I assume from eating too much/too fast.  I heard that living stomachless can cause random drops in Blood Sugar (BS), so I’m glad I bought a kit and was aware of that. Knowledge is power yall.
  2. Reflux – ugh.. I still get random reflux. Especially if I lay down or if I eat something that gets stuck. Microwaved leftovers are the worst. The microwave dry’s out the food and it get’s stuck in my esophagus. It’s a bad feeling. It feels like your chocking on air.. then – you get reflux.  It’s like foamy spit that doesn’t end for 30min – 3 hours depending on who knows what.  Lastly, after it’s over, you have heartburn from the whole thing. I’m trying to figure out what’s causing it but I’m not a fan.
  3. Running – I ran a mile. Yay! 10:30 pace.  Felt pretty good. I walked 20 min to warm up. I later needed a nap.. very badly. Also – I’m sore. Already.

2/4/2018 – Five Weeks Post Total Gastrectomy

Things are going pretty well. Here is what’s new:
  1. 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.
  2. 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.
  3. 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.
  4. Feeling a bit better each day. Energy levels spike and dive to near zero without notice, but that doesn’t bother me too much.
  5. 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.

1/28/2018 Four Weeks Post Total Gastrectomy

Week 4:
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.

1/21/2018 Three Weeks Post Total Gastrectomy

Week 3:

This week has been good. Few things to add:

  1. I have to sleep sitting up to start the night or I’ll get bile reflux.. feels like stomach acid just comes in your mouth. It’s yucky.
  2. Morning times – my belly is very sore. Still healing I guess.
  3. Back still sore.
  4. Energy Levels are still very low and I’ll just get hit with fatigue out of nowhere.

Same foods but adding chicken noodle soup. I even had a few bites of my wife’s fajita nachos. It was amazing and I limited it to like 5 bites.

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.