On Friday I had my two week follow-up appointment with my surgeon who said that I’m recovering really well and I even made the guy laugh! He’s a little concerned about my weight loss, but more on that in a little bit. Dr. Norton did tell us that out of all the patients who had clear pre-screens before surgery, I had the worst case of cancer in pathology he had seen, which underlined the fact that we made the right decision at the right time. Sometimes it feels like I got on the last boat off the Titanic so there is a lot to be thankful for. Our doctor also told us that the first CDH1 patient at Stanford is working on a book to talk about CDH1 and even has a ghostwriter for it so I’m excited to see what happens.
As far as recovery goes, here’s the update:
Disclaimer: the rest of this post might gross you out, but I think it’s important to talk about the highs and lows of this surgery. Today it’s been 17 days post-gastrectomy and what am I discovering? Meals are a battlefield. The other day I tried a teeny tiny bit of ground beef (think about the size of a Grape Nut morsel) and I literally thought I was going to die. Immediately my body wanted to reject it and spent the next hour and a half trying to get it out. I no longer have the muscle (which was my stomach) to “throw up” so my body tries to spit up food that it disagrees with and it is incredibly painful. It feels like when you swallow a huge piece of meat and it gets lodged in your esophagus, but now you’re lacking that muscle to get it out so your body does what it can. The pain goes from your chest and moves into your back and once it starts, it is impossible to get it under control until I get everything out. This has happened to me a few times a day for the past few of days so it’s a little discouraging. My body starts this sort of “gag” reflex, but it’s not the same, it just starts trying to spit it up, but the length of time the reflex happens seems to be getting better and rarely lasts for more than an hour anymore. Some days are worse that others, and on the days it’s bad, I’m not really in the mood for eating.
I’m discovering that there are certain triggers that make this happen: when I’m eating too fast or not chewing enough and when I drink more than a couple sips of water at once. It’s weird, but my body for the past couple of days seems to panic whenever I eat and wants to reject it even before I get started so I really have to concentrate on relaxing. Some website told me that I should try talking to my intestines and giving it a pep-talk before I start eating, does it work? Absolutely not. I am discovering that it helps to eat while I’m doing stuff, like writing a blog post or cleaning dishes and then chew like I’m a grazing cow.
The “mealtime body panic” seems to get worse when other people are watching, it’s probably all in my mind, but I imagine this is how zoo animals feel when people watch them eat. Once it goes into panic mode, I can’t eat anything for about an hour otherwise it just makes things worse. I’m also discovering that I’m a lot more sensitive to lactose than I was before my gastrectomy. I had a little mac and cheese earlier this week and had massive intestinal cramps throughout the night. I can’t give up cheese and other delicious dairy products, so I’m going to forge ahead using lactase pills and hope they work. So far, as long as I limit the amount of dairy I eat with a lactase pill or two, it seems to work out for me.
I have to keep reminding myself that it’s only been 17 days, so I shouldn’t feel frustrated about not being able to eat like a normal person. Sitting at home and watching Food Network is probably not helping. I watched “Man vs. Food” the other day and reminisced about the good ol’ days when I could wolf down a huge burrito chewing maybe 10 times the entire meal. It’s weird, because I don’t have that feeling of being hungry anymore, but I still have cravings… like for a burrito, steak, sushi, cookies, macapuno ice cream (and other dairy-products), chile rellenos, tacos, kim chi, rice, pasta, a turkey sandwich, burger, bacon, sweet potato fries, nachos, a big dog from O.co Coliseum (for that matter a kielbasa from the O.Co Coliseum), corned beef, bangers and mash, phô, Reuben sandwiches, Vietnamese sandwiches, ramen bowl with a friend egg and spam, spam masubi, pulled pork, and the king of all cravings, the glazed donut. Besides those, I think my cravings are pretty normal… Rumor has it on the east side of San Jose, there is a donut shop that makes a sugar-free donut, sweet glory! Kate will attest, however, to the fact that I still get hangry – which according to Urban Dictonary means: “When you are so hungry that your lack of food causes you to become angry, frustrated or both.”
I’ve been working on my list of what I can and can’t eat, but it seems to change daily. Junk food, unfortunately, I have an easier time eating right now. Yesterday I had a terrible day spitting up everything, but because it was our 6th anniversary, I took Kate to see Divergent where I did sit down and eat almost an entire small bag of buttered popcorn, go figure… Calories are calories at this point and I got 670 in that one sitting. Good golly.
Overall, the foods I can keep down with some regularity: sugar-free brownies, Lay’s potato chips, my protein shake, my protein bars, tortilla chips, certain soups, and Sobe Lifewater. A healthy diet, I know, but we’re taking what we can get as far as calories go. Figuring out how to drink water has been a learning process for me, I really have to focus on taking small sips otherwise I get that reflex feeling. It helps for me to sit down and sip instead of trying to walk and drink at the same time. According to my food journal, I’ve been cruising around 1100-1300 calories and it seems like my weight loss has leveled off. I’m still averaging about a pound of weight loss per day, but that’s a huge slow down from the almost two pounds I was losing per day last week. 
I think the key for me is to celebrate the little victories… like the fact that I can drink a small cup of coffee and had a small sip of soda that actually stays down! I can also remember how awesome it is to cuddle on the couch with my family and remember the journey I’ve been on the past few months. Perspective. Perspective. Perspective.
Steve Dang 
Hey Steve! Thanks for posting about the high’s and low’s of recovery. It will help prepare me better for my surgery so I can be more realistic about the recovery. I watched my mom go through it 4 years ago, and am reminded that she also went through this in the beginning. She now says she forgets she doesn’t have a stomach because she is doing so well. Perspective is key and I’m glad you remain positive through it all!!
It’s super tough at the beginning. Keep your perspective, it helps to remember why you did it. And slowly but surely it gets easier.
I found when I get excited about a food, I get lazy with my first bite and it all goes downhill. I force myself to stay calm and focus on slowly chewing that first bite. For some odd reason, after the first bite the rest of it tends to be down easier.
I hope your weight loss stops. I didn’t have too much available to lose, so I was really happy to have my feeding tube. With it, most of my weight loss was limited to the first days in the hospital and then not until after my feeding tube was out.
I was sensitive to dairy before, so it’s about the same for me now. You might find yogurt is easier to handle than cheeses & cheeses easier than milk. You can try lactose-free milk…it just has the lactase enzyme added.
And yes, junk food is easiest to keep down. A calorie is a calorie when the lbs are pouring off, so do whatever it takes! My theory is that junk food is probably ok when you’re burning it right off. And if it helps slow the weight loss, then awesome.
The weeks will slowly get easier and I found the 4 month marker much easier, then 6 months. It’s like your body has adapted pretty well by then. And slowly you’ll figure out what techniques work and what foods. You might get tired of those foods, but knowing it will stay down is worth it.
My bro is having good luck with yogurt, protein shakes, eggs and the chick-fil-a chicken patty. Keep it up! Also, when I got tired to spitting up, I’d just keep a spit cup around. Not classy, but it saved me when I tried to eat in the car and especially at work.
Keep up the positive perspective!
Thanks so much for the encouragement! I’m not going to lie, I thought this part would be a lot easier for me for some reason and it’s proving to be much more difficult. Today, I’ve also decided that I’m giving up wearing pants with no elastic band, they are already way too big. Looks like we might be doing some shopping this week. That is a great idea for a spit cup, I’m totally going to do that.
Steve– its so tough at the beginning, and don’t feel like a failure if you need to back off from a food group or level of ‘solidness’ and try again in a week or so. I’m impressed by your timeline! For the 10 days I was in the hospital the most I had was water or broth, and then it was another 10-ish days before i was moving on to fuller liquids and soft solids. I still had issues even then, so i think you must be doing really well for starting on food so early!
Agree with Marne– junk food is easier (just get past the mental block that its junk food for now and get your calories).
One rule that holds true for me is no solid foods before 8AM. They just come right back up (almost immediately). I guess my esophagus needs its beauty sleep and takes a while to wake up. If i start with tea, coffee or broth I can usually get down eggs and toast by 9AM.
Thanks for the encouragement both you and Marne! The past few days have been really, really rough so I’m backing off and sticking to protein shakes and chicken broth for the next few days. When I go back I’m definitely going to try your “no food before 8am” trick and a little warm up with some tea in the AM. One of the women I talked to told me her brother got the surgery and then put down a 17oz steak with all the trimmings a week later… Starting to doubt the validity of this story.
Oh yeah, wanted to mention your food network post cracked me up. My favorite show I watched while I was going through recovery was Diners, Drive-ins and Dives. It made me think of the saying, “Those who can’t, teach.” In this case, those who can’t eat all out, eat vicariously through good network shows.
And yes whoever said they ate a steak afterwards was full of it. If you can eat a half sandwich within a month post op,you’re doing awesome. Yes your body adapts, but it’s an extremely long, slow process.
Just keep trying. When something works, stick with it until you’re totally burned out on it. Keep remembering it will get better, just get through this part & you’re alive without needing chemo or radiation to beat cancer that took the lives if many members of your family.
God will get you through. Maybe He’s just showing you how strong and determined you can be.
Totally! Thanks for the reminder Marne! Getting through this without Chemo is sooo much better. I think I’m going to avoid the Food Network for a little while, but that new show about beating Bobby Flay is just too awesome… but bad for my morale. Thanks again for the reminder, I needed it! In other news going back to a liquid diet has been a good call. Tonight, I was able to actually keep down the soup, so I might just stick with it for a little while.
Steve, great to hear you’re doing so well post surgery and I can also relate to a number of your posts. I was on liquids only until about 10 days post surgery and then puree only for 2 weeks! So definitely normal you are experiencing some issues i think. My biggest struggle now (6 weeks post op) is breakfast. I’ve tried a few different cereals and different types of milks but i just seem to feel so nauseous after eating breakfast until about 11.30am. I’ve been fine other than that on all soft foods and haven’t been losing too much weight in the last couple of weeks. I did buy a block of chocolate yesterday and have nearly eaten the whole thing.. which probably wasn’t my best idea. Sugar is my killer. I hope things keep picking up and you have a great recovery. All the best