Sick Days, When You Feel Good

A few weeks ago I participated in a benefit walk for for Multiple Sclerosis. I consider myself blessed to have a boss I can also call a good friend. Throughout my journey from diagnosis to surgery #1, recovery #1, surgery #2 and recovery #2, Dale Gustafson’s friendship has been special. For anyone living with an illness, especially in our tiny CDH1/HDGC/Total Gastrectomy community, I think it is only human to look for people who can truly empathize with our journey. Perhaps that desire to connect with others going through similar experiences started with a search on Google, leading you to, connecting you to Marne’s blog where you discovered the two Rachels’ blogs, and soon emerged a small village of people simply telling their which sounds oddly familiar to your own story. I believe there is hidden value in hearing others stories as they navigate trials because it helps us create a language to process pain.

A few years ago Dale was diagnosed with MS. He knows exactly what it is like to have your world turned upside down and adjust to a new way of life while pastoring others through life’s challenges. Dale’s story has unlocked a new language for processing everything Kate and I have gone through in the past year and a half. While we have learned a lot, it has been invaluable to walk with someone who keeps it light. You might assume that all our conversations are deeply spiritual, but our most meaningful conversations have been devising a plan to tryout for the Amazing Race as the worst team ever: two pastors, one with MS and the other with no stomach which would relegate Dale to the food challenges and myself to the physical challenges, but at least we can both drive stick which gives us a slight competitive edge. We are only half joking.

Dale gets invited to speak in different contexts for the MS community and on the day of the Silicon Valley MS walk, I heard Dale say something to the crowd that was absolute gold, “Living with MS, I’ve learned I need to take ‘sick days’ on days I feel good.”

“living with MS, I’ve learned I need to take ‘sick days’ on days I feel good.”

IMG_2291A few weeks ago my motorcycle club was invited to be apart of a pilot episode for Jay Leno’s new show, “Jay Leno’s Garage.” This episode featured the San Francisco Motorcycle Club which apparently is one of the oldest in the country turning 111 years old this year. The producers wanted to shoot Jay riding around San Francisco with other motorcycle enthusiasts following an interview with the club president. How often does one have the opportunity to ride motorcycles with Jay Leno through San Francisco? So taking the advice of my boss and pastor, I was feeling good and put in for a sick day. So on a random Tuesday, my friend Brian and I rode to San Francisco to join some friends for breakfast at Red’s Java House right underneath the Bay Bridge before heading over to the club where hundreds of bikers and motorcycle enthusiasts gathered to ride with Jay Leno. When we got to the club I had to use the restroom and walked in the middle of their shoot. Seizing the opportunity, I asked Jay if he would take a picture with me and he actually said, “yes”. I could not believe it! Jay was wearing his classic denim on denim and I will just say, there is a reason why he rides with an open face helmet. It was a “sick day” well spent.

IMG_2295 IMG_2297


Sick day, well spent.

Truth be told, in the past few months, I could probably count on one hand the number of days that have passed where I have had a full day where I haven’t felt a spout of nausea, spit something up, or felt somehow sick. Some kind of episode happens at least once a day. Throughout this process, I have learned that when you feel good, live life, when you don’t, kick back, it will be O.K. It is part of living life without a stomach and my family and I are making the necessary adjustments. Even my two year old daughter is learning to adjust. When she see’s me lean over the sink to cough up what got stuck, she just hugs my leg, lets me be and life goes on like usual. Some days are worse than others, but aside from the hour or two a day of not feeling well, I am settling into my stomachless life. I’ve been on a new diet for the past couple months which has made a huge difference in my bile reflux and now I rarely have to take carafate in the middle of the night. My labs from the doctor this week look great with iron, D, b12, and absorption levels right where they need to be and I’m actually heavier now than when I went into surgery the second time level at 165/167. I’ve eliminated red meats and have switched to a low fat, low carbohydrate diet relying mostly on lean proteins, nuts and coffee. Side note: coffee is just my passion and has little to do with my diet. It’s funny, but my baristas are also apparently learning to make the adjustment to my stomachless life. This week I went into a local coffee chain that literally makes coffee one pretentious cup at a time… and I love it. The baristas at Philz Coffee typically ask you how you like your coffee so I asked for a large low-fat coffee (they usually use heavy cream) with 2 Splenda’s. My order led to an interesting conversation:

Barista at Philz, “do people judge you for drinking Splenda?”
Me: “not when I tell them I had my entire stomach surgically removed because of cancer.”
Me: “hahaha! I get that look every time.”
Me: “seriously, don’t feel bad.”

I don’t think he appreciated the joke as much as my stomachless friends.

Despite some of the annoying parts about being stomachless I’m trying to get back to everything I enjoy. This Sunday I’m taking the next big step as I attempt my first international trip. I will be taking a team of 18 people to Guatemala which is one of my favorite countries in the world. Our team will be constructing a church and running a children’s program in San Benito Petén, the location of Survivor season 11. If you are interested in following our journey you can do so here:


Recovering, Life

AmesD2-9376 I was standing on the boat ramp as the sun peeked over the hills overlooking Lake Berryessa in Napa, California a few weeks ago mentally preparing for a race. As soon as the warmth of the sun touched my face nothing could stop the lump forming in my throat or the tear that welled up in my eyes as I thought: I’m recovering life this morning. A year ago I thought my days of triathlon were over. A year ago I could not walk 150 ft to the nurses station, but on that day, I was preparing to swim 750 meters, bike 12.4 miles, and run 3.1 miles. A few months ago I remember seeing a picture of Marne crossing the finish line of a half-marathon and it filled me with hope knowing endurance racing is possible without a stomach. Like so many others who have recently been diagnosed with CDH1, I remember starting on this journey wondering whether or not my life was over, but seeing the journey of those who had gone before, there really is hope and life after a total gastrectomy. For me, the most difficult mental barrier in this journey was not the change. It was not necessarily the fact that my diet or my body was going to be different; it was coping with the sense of loss. It was dealing with the reality that life as you know it, was gone. A few months before surgery I went on a #farewellstomachtour because I was told I would never eat another steak, enjoy a flaky croissant, or a perfectly fluffy donut. For a formerly 210 pound foodie, this was devastating news.

IMG_1866In the beginning, coping with the sense of loss of life (as I knew it) seemed insurmountable especially as you struggle to hold down basic liquids wondering if the steady diet of Korean short rib burritos from your favorite local gourmet food truck has been relegated to variety pack sugar-free jellos, chalky protein bars and lifeless broths. For me, it was not about the change, it was about the sense of loss.

A few Sunday’s ago, our church started a new series called, “Ebenezer” focusing on stories of God’s faithfulness and redemption in the midst of great trials. Thankfully, it was scheduled to show on the weekend of my race which meant I would not have to sit there feeling completely exposed, naked and vulnerable in the company of 1500 other people. While recalling and retelling the story was painful, it reminded me of how far I have come. If I have learned anything this year – nothing is a coincidence.

Here is my video:


IMG_1863After this service, I had a lot of conversations with people facing their own challenges in life. Whatever the challenge, big or small, I noticed a theme: the struggle is not so much over the change – it was over a sense of loss. Sometimes that sense of loss can be overwhelming, and the thoughts of “just getting over it” or “moving forward” seems mentally impossible and can induce feelings of anger.

“You got over it because you are mentally strong”, people would say to me, but for me it did not happen over night. I know from reading my blogs, it can sounds like the day after surgery I was already on the trainer getting ready for my next race, but this is far from reality. The distance between one blog and the next blog is a just a few pixels, but for me, in that tiny space between posts, are the untold stories of doubt, frustration, pain, grief and straight depression (although, I would not have admitted it at the time) grieving the loss of life as I knew it.

IMG_1853Truthfully, I do not attribute where I am today because I am mentally strong, particularly brave, or uniquely resolved. In retrospect, I think I began moving forward when I accepted what Erwin McManus points out is the funny reality about history, “it’s unchangeable, but the future? We can create the future.”

Life as I knew it is history, I cannot change it and what I found to be true in my own life is: the longer I live grieving that sense of loss, the more resentful and bitter I become, so I should step into my new reality of life and begin recovering all the beauty life still has to offer. As weeks became months, I began recovering bits and pieces of the life I knew with greater appreciation. Can I still pound 3 donuts? No, but I can savor a single melt-in-your-mouth Krispy Kreme donut. I can sit in a café, people watch, and enjoy a perfectly crafted cappuccino. I can enjoy my daughter belting out the words to “Shut Up and Dance” in the backseat of my car. I can literally feel new life kicking as we wait with great anticipation the birth of my second daughter. Do I miss traces of my old life like eating red meat? Of course, but on those rare occasions I see an irresistibly juicy and delicious looking steak, I’ll weigh the cost and savor the couple bites I can have. As I learn to embrace my new life, I have found greater contentment, resolution and peace as I begin to see that life is not over, it is just different and along the way I have been surprised at the life I have been able to recover.

Josh-1330I do not think I am where I am today because I am a triathlete. I believe my passion for triathlon was worth attempting again to the capacity I could compete. Life is not over, it is just different, and as far as I can enjoy it today, I will to the best of my ability. On the day of the race I was passed by half the field finishing 139th out of 440 in 1:35:20, but it was not about winning my division or beating a certain time, it was about enjoying the process and finishing in a sport I never thought I would compete in again. Will I ever be able to do an Ironman? Who knows, but I want to keep training as long as I enjoy the sport. I do not think you need to be a marathoner, triathlete, or even a pastor to get through challenges, but do what you love in the capacity that you are able, because life is not over, it’s just different.




Another Dang Baby

With the arrival of the Easter season I am constantly reminded of what this time represents: new life. For the past couple of years, it has been a ‘new liIMG_1349fe’ in more ways than one. This past weekend I saw my Grandma, Mom and little brother baptized, taking their first communion on Holy Saturday – the sacred space between Good Friday and Resurrection Sunday – a reminder to me that it is never too late for new life to emerge. About 15 weeks ago I came home to a cake that read, “Congrats Daddy.” The good news was kept a secret until a couple of weeks ago when we took Evangeline to Disneyland for the first time and made the announcement: G-money is going to be a big sister. Roughly 24 weeks from now we are going to have another Dang baby. New life, in it’s most literal sense. Between now and then, it is a threshold to enjoy, savor, and to prepare.

The decision to have another baby knowing that each child was going to have a 50/50 chance of inheriting the gene was not a decision that we arrived at lightly. We wrestled with it back and forth, but in the end, it came down to whether or not we were going to live in fear. The reality is, there are many families in the world who have genetic challenges who make the decision to grow their families. To live in fear would mean going against the guiding principles underlined in the past year of my life. Hannah‘s dad wrote me on Facebook giving me hope that it will all be O.K. even if my children have the genetic mutation. This puts special emphasis on how important it is for me to journey through this stage of my life well. On another level, perhaps in the next 10-15 years medicine will have better screening techniques for HDGC.

Another Dang Baby

Another Dang Baby

In our early conversations with doctors, we were given many options to consider in regards to CDH1 and pregnancy including early DNA testing, IVF, and other genetic options. From the beginning, Kate and I wanted to go about this pregnancy naturally. The bigger decision for us in the process is whether or not we want to know if our baby has the gene mutation now, or if we want to wait until much later in life. Sometimes it feels like the decision comes down to which will give us the least amount of anxiety: knowing our baby has CDH1 and not doing anything about it until after high school, or wondering whether or not our children have the genetic mutation until they are tested at 14? The benefit of knowing now also means knowing we do not have to worry if our children test negative for the gene mutation, and if they are positive, knowing how to prepare our children as they grow up with an awareness of CDH1. In the end, I do not have to work too hard to be reminded by Evangeline everyday that she is more than the sum of genetic coding. Moving forward, we are going to choose not to let CDH1 dictate our lives.

This weekend I will be competing in my first triathlon without a stomach. In September, I was supposed to compete the weekend that began one of the worst months of my life. I am simply looking forward to crossing the finish line and putting CDH1 behind me. With all of my training, I have been able to gain back some muscle mass and some weight which now puts me at 165 lbs. In regards to my diet and eating, I am finding that my diet has diversified quite a bit. I eat raw spinach and vegetables and peel off skin as much as a can. I find, however, if I eat red meat too many days in a row, that I will have very bad intestinal cramping, so I try and limit my red meat intake now to one meal every few days. I stick mostly to chicken, eggs, fish, yogurt and nuts for protein, which is probably healthier anyways. So far, spacing out red meat meals has put the intestinal cramps at bay. Sometimes I get a little to enthusiastic about dessert or forget that certain drinks contain a lot of sugar and get dumping syndrome, but over all, my sugar intake has increased to enough to make living with no stomach manageable, because you don’t understand, I love ice cream. Love it. I am still getting bile reflux at night (I get relief by sleeping in a reclining position and manage with carafate) and I still suffer from insomnia, but over all, I feel like I’m adjusting well given the circumstances.

To new life, from the Dang’s to your family!



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.