365+1 Days – Happy Gastrectoversary!

“You will overcome difficult times” was neatly contained within the confines of the fortune cookie I ate a couple a days ago. Timely considering the fact it has officially been a year since I said, “farewell” to my stomach. For those who went to elementary school, there is no need to fight immaturity and tack, “…on the toilet” to the end of the statement because it is too true for me over the past year. The fact it came within the bowels of a fortune cookie is, well, too perfect. Looking back, I do not consider it a “year” since my total gastrectomy, to me, it has been 365 days. 365, 24-hour segments of my life – taking it one day at a time. Over the past 365 days I have discovered the best answer to the open ended question, “how are you?” is a specific answer, “I am ______ today.”

“I am good today.”

“I’m having intestinal problems today.”

“I am feeling nauseous today.”

“Feeling strong today.”

Today acknowledges being grateful and soaking in all that having a ‘good day’ has to offer. Today allows me to look past the challenges that currently face me without allowing my circumstances to dictate my entire outlook on life. Remembering yesterday reminds me regardless of what I face today, the sun will rise again and tomorrow will be a new day.

In the past 365 days I am learning that there is too much life left to live than to allow my circumstances to narrow my perspective. A couple weeks ago I received an encouraging note from someone who was recently diagnosed with CDH1 who stumbled upon my blog. Like me a year ago, I had no idea what a total gastrectomy would mean for my life, but I never thought I would be sitting here in the warm Southern California sun leading a group of high school students on a tour of Christian colleges (including my alma mater Azusa Pacific) enjoying an iced coffee in the exact courtyard where I made my decision for college ten years ago.  If you had asked me after my first couple of days in the hospital if I thought life would ever go back to “normal”, in my drugged out haze which narrowed my perspective, I would have said, “no way”.

Today, my memory is a blur because of how far I have come these past 12 months. The gap between day 365 and day 1 is only growing and with each day I am reminded of how I overcame difficulties yesterday.DSC_0906 While looking back on pictures from my time in the hospital does not conduce feelings of nostalgia, it serves as a reminder that “this too, shall pass.”

Day 1 was a very long day, but today it is a memory. My first memory after surgery was waking up in an elevator feeling like I was on fire. I found out later the epidural they gave me before surgery had kinked in my spine when they put it in so I was not getting any pain medication. I should have known something would go wrong with a young anesthesiologist whose hands were literally shaking as he put his hands on my spine. My only thought as he was putting the needle into the tiny space between my spinal cord was, “good golly, I’m your maiden voyage…”, but we digress. The first voice I heard was Kate’s, “They are all done. You’re doing well. The scar is bigger than we thought.” Her words were filled with emotion. It came from a loving wife waiting for her 29-year-old spouse to come out of a surgery missing a vital organ like a stomach. I could not see her clearly, but I could feel her with me. Even drugged up I could tell she was exhausted. We had arrived before the sun came up, it was now mid-afternoon, and from that moment each subsequent second would lead to TG +1 minute, +1 hour, +1 day, +1 month and now I’m happy to be able to calculate that day using +1 year. DSC_0885

Everything changed overnight, not just my physical body, but even the character of our marriage. “In sickness and in health, for better or for worse”, would cease to exist as words exchanged between two lovers and would become a defining characteristic of our marriage. Over the next 365 days those vows would continue to be forged, but on the other side, we started to notice our philosophy of marriage taking on new life. We used to believe our marriage was about taking turns carrying each other – being strong while the other is weak – which is true, but this year, I think we learned what happens when both of us are frayed. Over the course of the last 12 months we have learned that we do not carry each other as much as God carries both of us. There is a huge difference. We used to say to each other, “I need to be strong for the both of us” and this year we’ve learned to say, “God is strong enough for the both of us.” While exhausting, over the past 365 days, I believe we found a strength in acknowledging a source deeper than each other and it has enriched our faith and our marriage. While this year would not be a year I would want to repeat, it brought us to a profound place of faith, trust, love and commitment finding freedom in not expecting the other to muster up the mettle to carry both of us, but rooting our hope in One who gives strength to the weary.

A year ago I looked down at the Grand Canyon along the length of my abdomen convinced it was not going to fade. The fresh wound paired with heparin had turned my fresh wound all shades of black and blue. I had abandoned all hope I would ever get used to it. 365 days and 1 additional surgery later, the scar is healing and I am starting to embrace it as my new body.

A few weeks ago I took Evangeline to the beach. When I took off my shirt my daughter saw my scar and said, “Daddy, what’s that?”

IMG_0855I traced the line that stretched from my diaphragm to my waist line with my finger and said, “that’s daddy’s scar.”

With a developing sense of empathy and compassion she responded, “Daddy’s scar? Ohhhh.” and then she hugged my leg and kissed me.

She will always remember Daddy with a scar. That moment, her Daddy’s scar, that day and every day after will serve as a reminder of why we continue to move forward taking one day at a time. The scar reminds me that how I choose to walk through this today matters, not just for me, but for her and our family.

“You will overcome difficult times.” This wisdom truly is fulfilled by stepping forward embracing all of the nuance, challenges and beauty of today. The past 365 days has been the most difficult year of my life, our marriage, for my family and friends, but it was a year I would not trade for anything. Kate and I want to thank you for all of your support, love and prayers through the past 365 days, here is to 365  and +1 more day.



While taking a few of our high school students on a tour of my Alma Mater, I was able to celebrate my total gastrectomy date with some amazing cappuccinos and a couple bites of the greatest donut on the face of this planet (literally, the greatest), the Tigertail from Donut man.

Call it college nostalgia if you want, but it really is incredible.

Toasting to the past, present and future Azusa Pacific Alumni

Too many coffee shops, too little time.

Enjoying a cappuccino is Silverlake is part of taking it all in 365 days later

Intelligentsia Coffee, too good.

The Belly of the Whale, Get It?

A few months ago there was a hilarious hashtag on Twitter, #wecanlandaprobeonanasteroidbutwecant… The responses were pretty amazing: “we still can’t believe it’s not butter”, “we can’t order breakfast at McDonald’s after 10:30am”, “we can’t type more than 140 characters”. It was a reminder that while human beings can do incredible things like land a probe on an asteroid, map the entire sequence of the human genome, but despite all the advancements of modern science, there are still limits. Those of us living with CDH1 know this all to well as first world medicine still does not have the ability to detect and screen for HDGC in it’s early stages.

Thud. Tonight I am up because my daughter fell out of her toddler bed and I could not go back to sleep. I picked her up and placed her purple owl blanket back over her. I asked her where her “owie” was and she pointed to her cheek with a big fat tear in her eye. I kissed her soft cheeks as she began falling back asleep. While I was rocking her back to sleep I could not help but to wonder if technology will ever get to a point where there will be better screening techniques by the time she has to get tested. I really hope this is not the beginning of a new form of anxiety where I wonder whether or not she has the genetic mutation, but as it has always been since the beginning of our CDH1 journey, it is going to be a matter of trust and faith. As is often the case when it comes to our health, when things are out of your control, trust is often the only thing we have left. In someways it is wonderfully freeing, it does not make the situation any easier necessarily, but it does cause a person to root their hope in something other than oneself.

A few days ago we celebrated Ash Wednesday ushering in Lent, a season in which we remember our mortality, but also our own finitude, our smallness and the limitations of our own humanity. One of the reflections around this season, oddly enough, is the story of Jonah who runs from his calling, gets caught in a storm in open water, is swallowed up by a creature from the sea and lives for three days in the belly of this fish. Get it? Belly?

The reader is not told what transpired within the whale, the science behind what happened, or the historicity of the story, but here is the point of the story: Jonah’s life is preserved and he does not come out the other side the same person. For three days and three nights he reflects and comes to this conclusion:

“In my distress I called to the Lord,
    and he answered me.
From deep in the realm of the dead I called for help,
    and you listened to my cry.” Jonah 2:1

Something changes about Jonah’s heart while he survives within the belly of the fish and is vomited back on to dry ground. He’s literally gone through hell and within that time probably had lots of doubts and questions: “why?”, “why did this happen to me?”, “what does all this mean?”, “God, where are you?” Somehow, someway, from within the belly of the whale he comes to the conclusion that God was with him in the middle of the worst storms, under the worst circumstances and when he hit rock bottom. This recognition does not necessarily make it any easier to live within the belly of a fish, nor change his circumstance, but something changed about his attitude, his heart and his faith in God. Sometimes, it can be freeing to realize when that all we have sometimes is trust.

Pastor and writer Erwin McManus says about faith, “trust is faith when it’s directed towards God.”

Within the belly of the whale something changes about us. We gain a new perspective on life. We appreciate the little things. We take it one night and one day at a time. When we are “vomited” (which is a perfect descriptive word for what it feels like to go through a total gastrectomy, isn’t it?) back on to dry ground, we can start to see traces of God’s provision along the way. A blog post here. An unexpected friend there. A kind touch from a nurse. A doctor with solid bedside manner. A bite of food you have been craving and were able to keep down. All of it, traces of grace.

Good morning.


Health update:

IMG_0877I’m slowly putting weight back on and right now I’m back to weight before going to surgery staying stable around 158-161 pounds. I’m back to exercising and was able to do a 44 mile bike ride last week and a 25 mile bike ride yesterday. I can run about 5 miles at an 8:40 pace, if I push it, and I feel great along the way. I don’t sense thirst (which is a problem I had before surgery) so I have to remind myself to hydrate, hydrate, hydrate, even when I do not feel like it. Throughout the day I can eat about 2200 calories and honestly, I feel like I’m eating like a normal person again. I still however, have to remind myself to eat slower sometimes. Apparently I was born to be a competitive eater, so this really is a transition for me.

My nutritionist is happy with my weight. She told me the weight that I can maintain without having to “push it” to maintain is the best weight for me. It is unrealistic for me to try and balloon up to 170 lbs as the amount I would have to eat is not sustainable in the long term. As of right now my blood pressure, my BMI and general health is good, so I should simply keep living life. Switching medical groups and getting plugged in with the bariatric community has been one of the best resources I gained for myself throughout this process.

On the not so bright side: the insomnia, apparently, is still an issue. According to my Fitbit tracker, which I do not know if it is better or worse for my insomnia, says that I am averaging about 3-4 hours of solid sleep a night. I still have issues with bile reflux, but it is no where near as bad as it was before. Dumping syndrome has helped with a change of diet, although it is incredibly difficult for me to give up delicious bread. I know it’s rolling the dice, but how could it be so wrong if it tastes so right? Randomly I woke up in the middle of the night last week dripping in sweat with the onset of dumping, it was really weird considering it had been hours since I ate last.

My new project: about a month ago, inspired by a Buzzfeed article on coffee shops you have to visit before you die, I decided to go on a motorcycle tour around the Bay Area in search of great roads and great coffee. If you want to follow my journey, subscribe to my YouTube channel here, and my Medium site here.

In a couple weeks it will officially be a year since my total gastrectomy, until then, live on!


February in California is pretty rough…

Stay Toasty My Friends, Phở Reals

There are some solid perks to having a nurse as a wife, like giving my monthly b12 shot without having to go to a doctor, access to an instant wealth of medical advice through text messages, or starting IV’s in the hospital when no one else can get them, but one of best advantages is being able to interact with some incredible doctors. While my surgeon is a genius and can remove stomachs with robotic precision; the sparse follow-up and the classic post-gastrectomy nutritional plan which can be summed up, “just eat more eggs”, is not going to cut it. This brings me to another huge lesson learned through this process: when it comes to your health, you need to be your own advocate. Perhaps it was naive for me to assume records, medical history and relevant paperwork would easily pass between doctors offices, that is not necessarily the case depending on your health care network. Being proactive about my own health by scheduling follow-up appointments, arriving fully prepared for consultations with medical histories and records has been the only way to ensure I am getting the most helpful information about my health.

20140526-220238-79358335.jpgLast May I officiated a wedding for a couple in the medical profession. The bride, is a nurse who works with Kate and the groom, a primary care physician. The communication from Stanford and my primary care physician has been non-existent to the point she was surprised to hear about my history with CDH1, HDGC and my total-gastrectomy, so we thought it was time to make the call to the bullpen. After many consultations, nutritionists, gastroenterologists, dietitians and snake oil salesmen, we decided our best bet was to get into a network that communicates better with Stanford. Dr. Perkins, whose wedding I officiated, happens to be a primary care physician in a health group that works closer with Stanford. On our first visit, he was able to refer me to their bariatric community.

For the first ten minutes of my meeting, my nutritionist was very confused about why I was in the bariatrics department since my goal was not to lose weight. After explaining my family history, the past 12 months, and the struggles I have lately with dumping syndrome, again, she was surprised I did not have a team following up on my care. This is where I think the CDH1/HDGC community could learn from bariatics. While bariatrics studies the causes and treats obesity, in this network, a surgery involving a major life change like a gastric bypass requires at least six meetings with nutritionists, surgeons, dietitians and group counseling before surgery. After surgery, bariatric patients continue to meet with the surgeon at regular intervals to ensure proper healing, they maintain constant contact with nutritionists who keep regular tabs on blood work, and are encouraged to attend group counseling as a way to help people transition towards a new way of life. While I was able to find a group online to help me figure out what life would be like after a total gastrectomy, I think having a team of medical professionals following up with me for the first year after a life changing event like a total-gastrectomy would have been helpful. Up to this point, I have had to schedule my own follow up appointments with various specialists without a real plan. My gastroenterologist has concluded it is no longer necessary for me to see him because my surgeon knows my body best and in any event, all medical procedures involving my digestive tract moving forward would have to be referred to Stanford anyways. Up until now, Kate has been explaining the labs from my blood work and depending on the numbers, off to Whole Foods I go to pick up the necessary supplements. Not the best plan of attack, but this is what I had, until now.

In my 60 minutes with my nutritionist I learned about some various forms of vitamins that will have an easier time absorbing in my intestines:

D3 – as cholecalciferol

Folic acid

Iron – as ferrous fumarate

B12 – right now I’m getting shots of cynocobalamin, but my intestines  might have an easier time of absorbing the other form methylcobalamin.

Vitamin K – this week I started eating spinach again with very little issue, so hopefully my issues with vitamin K and iron will work itself out.

She also told me that I should be paying attention to calcium and biotin which has a variety of jobs, but most relevant to me, it might help with the regulation of my blood sugar.

Switching from Gatorade to coconut water was a good decision, nutritionally.

death in a bowl

The nutritionist also had a solid theory about the dumping syndrome I had been getting almost everyday a few weeks back. When she told me part of the issue was bread, I thought, “OF COURSE!”, but then she explained to me that gluten is not the problem. The bread, regardless of whether it is gluten-free or not, goes into my intestine, starts to soak up water and expand in my intestines which mimics what happens when I get dumping syndrome. I was advised to stay away from fluffy, spongy breads (gluten-free, whole grain, enriched or not). Any breads/grains that soak up water and expand in my intestines are now off the menu, which explains why I have been feeling better since switching to a lower carbohydrate diet. If you know me, you know my love for all forms of bread, especially the fluffy ones, but she did tell me the more toasted the bread, the less it will absorb water. If I have to get a sandwich fix, I should try an extra toasty panini instead. If I have to get a pizza fix, the crust should be as thin as possible. Crackers are perfectly fine as long as it does not absorb too much water and expand. This also explains why I cannot eat phở noodles anymore. If you have ever left your phở noodles in the broth for too long, you know that they expand… like universe. So the basic test from now on: if I place a piece of bread/noodle/grain in a bowl with water and it starts to soak up water morphing into the psychomagnotheric slime from Ghostbusters, I should probably stay away from it. So my new motto for life: stay toasty, my friends.


Thanks Landi!

On the health front, I’m starting to get more exercise and I’m recovering a lot of my muscle mass. Thanks to a friend who has been lending my his mountain bike, I have rediscovered the sport after being 12 years away, a welcome change from miles on a road bike. My weight hovers between 158 and 162 lbs depending on calories in/out, which my nutritionist said was healthy weight for my height and age. My body fat percentage is 18% which is a little on the high side, but she thinks incorporating some strength training will help. My insomnia and bile reflux, however, are still a nagging issue, but are small in comparison to other issues I could be having. The portion sizes with my food have been consistent for the past few weeks and I’m learning how to regulate how much I eat in one sitting so I do not feel like I am going to explode. It has been a discipline to remember not to drink water with my meals, but overall, my diet feels almost normal. Apparently, 11 months post-gastrectomy, life can still be awesome.

Until my next post, stay toasty my friends!


Bad vibes… for my intestines

Lessons Learned #4: Take it all in


If the past 10 months has taught me anything, it is that life is too short, spontaneous and awesome. It’s cliché, but with good reason. I used to consume meals like I was in a food challenge, today eating is different and in someways better. Besides the practical part of chewing food well enough for my intestines which are now doing the job of two organs, living without a stomach has only underlined that each bite is meant to be savored and enjoyed. So in 2015, I’m resolved to take it all in.


When I began this journey, I thought my culinary adventure was over. My “Farewell Stomach Tour” lead us to some incredible meals I was not sure I would be able to eat again. Today, the more I have discover the balance of nutrition and good eats, the more I just want to take it all in. For Kate’s 31st birthday I was just about to click “buy now” on a new iPad, but soon realized for the same price we could spend a weekend away together and eat some amazing food. For 2015, “stuff < experiences”, is our new motto, so we’re starting a new food tour in the land of good food and wine. After our friends and family generously agreed to watch G-money for the night, Kate and I took a short road trip to Napa, California. Having a child, you forget what life like is like when it is just the two of you, but some things do not change as we now need to pack just as many snacks for myself as we do for Evangeline. A handful of 100 calorie packs of chocolate flavored almonds was just enough to take the edge off hunger for a two hour road trip.

FullSizeRender 2Our first stop in Napa was Gott’s Roadside. Known for their burgers, the recommendation from my friend Danny whose taste buds I never question, was enough to convince me to get was the ahi poke tacos. If you are a fan of the Hawaiian staple of raw tuna, than you are going to love this taco with fresh ahi and seasoned to perfection with soy sauce served on a bed Sriracha coleslaw, topped with toasted sesame seed, green onion and avocado stuffed into a crispy taco shell. Kate got a California chicken sandwich which was definitely the weakest link at lunch. The chicken was juicy which makes it easy for me to eat, but something was missing something to give the sandwich it a little more character. While the California chicken sandwich was a little flat, the chili-spiced sweet potato fries with the homemade cilantro ranch brought the meal up a notch. Against my better judgement, I ate two of the tacos and felt terribly full.


Your tulip game is strong my mustached friend.

I find the best way to help move all that food along is a walk and a cup of coffee, so we walked next door to the Oxbow Public Market to make a quick stop at Ritual Coffee Roasters. Here is a good rule of thumb: you can usually judge a good coffee shop by the amount of hipsters working the espresso bar and so far, my system has never failed. Are you rocking a mustache, skinny jeans, flannel, slicked hair, weigh out your coffee grinds AND water? Enough said, I’m sold. The result was a perfect hand crafted cappuccino, topped with a strong tulip game. It was topped with a little sugar in the raw and was smooth until the last drop.2015/01/img_0326.jpg


Gluten-free, organic, locally sourced, handcrafted, and expensive? Sounds like a gourmet market.

Walking into the Oxbow Market immediately made me wish I had more room in my abdomen because it is a gourmet food court complete with butcher, meat and cheese market, all things I love in this life. A case filled with assorted Italian cream puffs called bignés from Ca’ Momi greets you as you walk through the door making it impossible to ignore and are perfectly Steve Dang sized. Kate and I picked out three to enjoy with our perfectly-hipster made cappuccinos. We picked an almond, hazelnut, and vanilla bean Bigné which were all topped with a delicious brittle and filled with a delicious mousse-like cream filling. You’d better believe we made another stop on our way out of town.

Bigné (notice the spelling difference) Decadent, light, fluffy balls from heaven. A cross between cream puff and mousse.

Bigné (notice the spelling difference) Decadent, light, fluffy balls from heaven. A cross between cream puff and mousse.

IMG_0346Can you be in wine country without a tasting? Since parting ways with my stomach I do not drink wine anymore, but it’s life, so the tasting for me was more about the experience and pouring it out. We were literally the only people in the tasting room and they treated us to a few more tastings not included in the standard tour. Our sommelier actually inspired the theme for this post as he taught us the art of making wine. He said, “wine is about taking it all in, you embrace the constant minor adjustments along the way and the end results can surprise you.” Sounds like an echo of what has been perculating within my soul these past 10 months. While wine is no longer on the menu for me, I do not really mourn the loss since I am more of a coffee guy anyways, so off we went to downtown Napa where we saw the rebuilding process after an earthquake shook the area this past August. I snapped a quick picture in front of the picturesque Molinary Caffé still surrounded by construction debris before we headed in to try my first flat white which is described as a “microfoam over the top of espresso” which I likened to a less foamy cappuccino and thinner latté.

The whole reason for us coming was to visit a visit to Trip Advisor’s #5 restaurant in Napa, Celadon. Located right off the river in the place of an old mill, this neighborhood in Napa lives up to all the postcards. Celadon is known for their global comfort food with Mediterranean and Asian influence. The restaurant itself is beautiful and you could immediately tell why the restaurant is so popular in the summer months with a big open air courtyard with gorgeous views of the town. We started off our meal with an order of mussels in a buttery white wine and bacon sauce served with crostini’s. Without a doubt, these mussels were super fresh, plump and floating in a sauce that can change lives. I had been looking forward to trying their pork belly which had rave reviews online. The pork belly sprinkled with a hoisin sauce and topped with crispy asian noodles was crisped perfectly on the outside and so tender on the inside that my fork pierced straight through the center without resistance. The pork was served with a new vegetable I had never tried before, roasted kalettes which apparently is a cross between kale and brussels sprouts. While the kalette was delicious, I went easy because tough vegetation still gives me some digestive issues. Unfortunately, I ate too much of the pork belly to eat much of my meal, but the couple bites of the moroccan braised lamb shank served on a bed of couscous with almonds and dried cranberries was absolutely amazing. Kate ordered the dish of the weekend which ended up being some of the best scallops I have ever tasted. Apparently, the chef sources the scallops from the northeast, having them flown overnight to Napa and served within 24 hours of being harvested. The scallops are served with an al dente risotto and spinach. Feeling stuffed, it was time for another cup of coffee while we had a long debate about which dessert to try. In the end, we opted to go outside of our usual créme brûlée and ordered a bread pudding served with fresh berries in a Grand Marinier créme anglaise which I am determined to add to my cooking repertoire. Who would have ever thought I would be able to do something like this again? So needless to say, it was a two hour meal where I truly savored the good company and cuisine.


24 hours from sea to our plate


Pork belly with kalettes


Moroccan spiced braised lamb shank


Mussels in a buttery white wine and bacon sauce



Reflecting on this past weekend, when it comes to the food tour, you do need to be a food writer to write about food, and remembering is all about savoring. For those stressing about what life will be like after a total gastrectomy, let me encourage you: the crappy parts will pass, take the bad days with a grain of salt, and you’ll find that life without a stomach, can still be pretty good. Chew well, log what you eat, balance out your nutrition, stay physical, and take in all life still has to offer.



Here is are some gratuitous food shots I didn’t have time to write about:

From Casa in the Oxbow Market:2015/01/img_0388.jpg


Crab salad taco and a flank steak taco


Homemade tortilla served with a tender rotisserie duck breast

It wasn’t all eating in Napa, so we took a little 5 mile hike in Skyline County Park. The sites were pretty incredible.


To burn off some of the extra calories, we took a little hike up to a small lake in Skyline County Park.





2014: The best of times, the worst of times.

With M80’s and fire crackers still going off in our neighborhood, Kate and I were reflecting on this past year and she asked me, “many years from now, what do you think we will remember from 2014?”

In the words of the great Charles Dickens, it was the best of times and it was the worst of times. While 2014 was tumultuous to say in the least, it brought out the best of me and also the worst in me as an individual. It was a crucible for our marriage putting to the test our vows, our commitment to each other and it brought out the best and the worst in our relationship. In the past 12 months, we as a couple and as a family moved to a deep place of Kate and Steve-105surrender, trust, hope, commitment, joy and love we have never experienced before. Yet, at the same time, the barrage of complications, the slow sludging through the unknowns of life without a stomach and the dread of being chronically sick has taken it’s toll. 2014 tested the elasticity of our friendships, our support network, and our families which have led to some pleasant, unexpected surprises as we expand the boundaries our community. This was a year I would not want to repeat again, but I would not want to trade it for anything as I experienced both the trial and triumph that makes life worth living.

After 10 months, living without a stomach in some ways has been easier and in other ways more difficult than I could have ever imagined. The complications I have been struggling with over the past couple months have underlined the fact that constant adjustment is the new ‘normal’. There are days when I hardly remember I had a major surgery, and other seasons where I am reminded of the really annoying realities of being stomachless. The top of the list right now is not being able to sleep laying completely flat which makes every night like trying to sleep on an airplane. There is a sweet spot in the angle of my body that will keep me from getting bile reflux in the middle of the night, but the delicate balance in how I sleep makes me choose between neck, lower back, or butt pain. Waking up every couple of hours to adjust my body is reminiscent of those zombie-like days when Evangeline was just weeks old. Second on the list is trying to figure out why for past few weeks I have had dumping syndrome/reactive hypoglycemia (I can’t figure out which it is) at least once a day regardless of changing my diet. I can only imagine what other patrons in the grocery store think about a man who walks around like he is drunk and sweating profusely 45 minutes after lunch. The constant adjustments to my diet like lowering carbohydrates, boosting protein intake, and changing my snack schedule is inconvenient, but it is not the end of the world. For now, I’m making the slow switch to a low-carbohydrate diet which I think has helped with the dumping syndrome/reactive hypoglycemia, but I think the switch has left me feeling more lethargic.

Kate and I want to wrap up 2014 thankful for what the resilience and resolve this year has instilled in our faith, our marriage and our family. We are incredibly grateful for the deeper sense of community and friendship for all of you who have rallied around us, covered us in prayer, taken care of Evangeline when I could not lift more than 8 lbs, made us meals, and have been extraordinarily generous to support us. When we think of 2014 many years from now, we will also remember you. Finally, it is said that a picture is worth a thousand words, so we’re going to let the pictures speak for themselves.

January 2014


Preparing to say ‘farewell’ to my stomach


February 2014


The farewell stomach tour was worth every penny and every calorie


March 2014


If this is the last meal I’m going to eat, it was a good one.


April 2014


Thankful for my friends who have passed on friendly recipes for the stomachs.


May 2014


Small, but mighty portions. Hello appetizer menu!


June 2014


No reason to be afraid to cook


July 2014


Experimenting with the foods I can and can’t eat. Chicken, yes! Rice and noodles, no!


August 2014


For our friends who made us some incredible meals along the way


September 2014


Living without a stomach has made me a better cook


October 2014


Coffee makes the world go round


November 2014


I never thought I would eat a steak like this again. I can’t eat as much, but I can eat it, and that alone is worth being thankful.


December 2014

I ended the year with a final motorcycle ride of 2014 waving goodbye to my stomach, a crazy year, and hello to what will hopefully be a year of good health! While 2014 was challenging, I wouldn’t trade it in for anything. Thanks for journeying with my family and me!


Kate and Steve-225 IMG_0300


Advent: Mockingjays and ICU’s

A few days before Christmas in 1993, my dad passed away of stomach cancer and every Christmas since has not been the same. As a result, I became a Christmas Grinch. My “grinchness” had nothing to do with presents, consumerism, or fighting for the “soul of Christmas”. For me, it was purely a deep sense of loss I felt around the holidays when the other kids in school were making Christmas cards for their parents. This loss left unattended over the years caused my heart to shrink two sizes small. Many years later, I have profound empathy for those of whom this season is not so jolly. My heart is tender towards others for whom this season accentuates the missing seat at the table. Since we started dating in 2002, Kate’s been trying to change my mind ever since, but for some reason I just could not jar that feeling of loss enough to really enjoy Christmas. I know it sounds strange coming from a pastor to have a malaise around the Christmas season surrounded by all of the “fa-la-la-la-laa’s”, but there was a deep healing that needed to take place. My ministry around this season since becoming a pastor is about acknowledging others for whom this season is difficult and pointing them towards the deep hope the season of Advent represents: that God is not far off in the distance, but in a real way, God with us “Immanuel”, Matthew 1:23.

One theologian and pastor likens the season of Advent to the time of waiting and anticipation between Mockingjay, Part 1 and Mockingjay, Part 2. Like the books, we know the end of the story, but until it unfolds, we wait with eager expectation. The church, therefore, approaches each Advent season with a renewed sense of hope reminding each other of the truth, as it was from the beginning of creation, continues to remain true for us today: God has not, and will not abandon His people. We remind each other in this season that God is in the business of taking the darkest and most hopeless situations and saying, “let there be light!” and as He brings the darkness to light, new life emerges. This is the good news of Advent, that a little child born to a young, unknown family in the middle of nowhere, can change everything. Can a child change everything? Yes.


Austin and I chillin’ in the ICU

During Thanksgiving week my little brother went into surgery to replace the damaged valve in his heart. While he also tested positive for CDH1, the surgical team determined the heart to be the most pressing as he could literally drop dead at any moment. After the successful surgery the surgeon told us Austin had the worst congenital heart disease he had ever seen and when it failed, he would have died within a few minutes. My brothers heart surgery landed him in the ICU at Stanford for the first few days of recovery. It goes without saying, but ICU’s are intense. Walking into the North Wing Intensive Care there is a room on your right with soft lighting, couches and tissues. Lots of tissues. Bad news takes place in there and every time I walk past it, that is all I can think about. A couple times during my visits with Austin an alarm would go off on the unit sending everyone into a frenzy, shouting codes and room numbers. Like I said, intense. Kate as a nurse in the Emergency Department tells me that you learn to deal with death, not that it stops bothering a person, but to distance yourself from it otherwise you cannot function. As a result nurses can develop a certain edge about them because they have to protect themselves. I was wrapping up my visit with Austin one afternoon and was walking out when a family entered the unit holding a baby that could not have been more than a year old. Immediately, I saw the battle hardened floor nurses surround this baby with cooing and baby noises. In the middle of a unit constantly surrounded by death, these hardcore ICU nurses smiled, softened and greeted this baby because she represented hope. In that moment, there was an acknowledgment that there is more to this life than what this floor experiences everyday. In the middle of this floor, we were all being reminded of the hope and beauty of life that can take place in the midst of chaos. So can a child change everything? Absolutely.


The first of many Christmas shows… so proud of little G!

The more that I began to recognize this aspect of Advent and the Christmas season, the more I am convinced that if Christmas is for anyone, it is for brokenhearted people in need of hope, it is for you, it is for me. For 12 years Kate has been trying to change, or I should say redeem, Christmas for me. This tumultuous year for the Dang’s was filled with 4 hospital stays, 3 bowel obstructions, 2 surgeries, 1 hernia and a partridge in a pear tree, but despite the challenges, this Advent season means something just a little bit different. I watched my daughter Evangeline perform in her first Christmas show put on by her preschool. As she sang “Twinkle, Twinkle” with her class and did the hand motions, she constantly was looking back to make sure we were paying attention and we cheered her on. In that moment, I recognized that Christmas no longer has to be about that deep sense of loss, but of renewal and new life because God is with you… and me.

Merry Christmas.




Merry Christmas from Steve, Kate and Evangeline Dang


The Dang and Cooper Families

the (650)

Almost exactly a year ago I was sitting eating sushi with my friend and co-worker Jeff, when I saw a familiar area code pop-up on my phone. (650). It would be one of many calls I would be receiving from Stanford since last October, but this phone call changed my life. I guess you could say that lunch was over at this point, but I did, however, go back in to enjoy at least one more piece of sushi knowing what a positive CDH1 test would mean for my future eating habits. Who would have thought only 8 months later I would be back to eating like a normal human being again? The amount I’m able to eat and the variety of food on my menu is growing and as of this week I am finally back to the same weight I was before the second “episode” started a couple months ago. It’s hard to believe I had gotten down to 147 lbs! At 147 lbs, every time I stood up I would get lightheaded and would have to focus on getting up slower. I’m now hovering somewhere between 158-160 lbs again, but it’s taken a lot of work/eating to get back here and maintain.

This past weekend at church I was announcing a yearly tradition we started with my small group of high school guys called, “Very Spicy Thanksgiving Dinner”. Around Thanksgiving every year we go to our favorite hot wing place, Smokeeaters, enjoy some community and watch football. I flashed a picture from last year and mentioned how small my daughter looked, but one of my students looked at my picture in surprise, and said, “look at you!” Sometimes I forget what I looked like 50 lbs heavier. I see myself in the mirror all the time so the change has been gradual, but to think about what I looked like a year ago, yikes! I look like I ate myself! Yes, I do miss being chunkier. It has been nice, however, to shop at places I couldn’t before… like the Gap. Speaking of which, the unintended consequence of losing the weight, besides gallstones, is the added expense of replacing my wardrobe… not to mention all of my motorcycle gear (!!!). It’s funny, when I lost the weight, I never expected to lose weight around my head, which meant I needed a new helmet. It’s a good thing the letter I wrote to Sport Rider magazine was the letter of the month (Jan. 2015) and the prize? A brand new helmet! Rock on.

My letter, within + a new helmet

Very Spicy Thanksgiving Dinner 2013

Very Spicy Thanksgiving Dinner 2013

Very Spicy Thanksgiving 2014

Very Spicy Thanksgiving Dinner 2014

My goal moving forward now is maintaining my weight somewhere around 160 lbs, re-incorporate exercise, and eat better calories instead of the high-calorie, low nutritional value diet I was on just trying to stay out of the danger zone. Goodbye peanut M&M’s, hello vegetables and complex carbohydrates. After finding out that I’m low in vitamin K from my last surgery, I’m on a quest to discover vegetables I can digest without pain. I get a lot of suggestions for nutritional supplements/shakes/elixirs, but to the best of my ability I want to try and chew my nutrition rather than putting it in a shake. Certain hearty vegetables like spinach are still giving me issues, but it is not as bad as it was before. Consistently I’m able to eat cauliflower, carrots, peas, lettuce and various potatoes so I’m trying to balance out my meals. Since my second surgery, I have been able to eat dry breads without any issues so sandwiches are back on the menu (so happy) especially because sandwiches are my some of my favorite things on the face of this planet.

As we get ready to celebrate Thanksgiving, there is a lot to be thankful for, just being alive for one, but also for the crazy journey I’ve been on this year. This Thanksgiving will be bitter sweet on many levels. I’m excited to be reunited with my brother and sister-in-law who live and work in Korea, but tomorrow at 5:15 am we will be preparing to send my youngest brother to Stanford to fix a valve in his heart. While he tested positive for the CDH1 gene-mutation, our doctors have determined his heart is the most pressing need. Tonight we had a Thanksgiving feast for my little brother at a quirky little place in Saratoga, Harry’s Hofbrau, which was a lot of fun. Austin did have a special request before the dreaded pre-op fast asking me to bake him a cake so I made him a white cake with a raspberry cream cheese filling and a vanilla bean buttercream frosting. Well, it’s off to bed for me, I’m headed back to the (650) before the sun peeks over the mountains.




Celebrating Austin’s 25th Birthday with a homemade cake




The Dang Brothers