Still Good, All the Time by Kate Dang

It was the best of times, it was the worst of times. This is probably the best description of the last week of my life. This may sound a little odd considering my second child was born on Monday. Exactly one week ago today my very pregnant self was patiently waiting for Steve at the finish line of his Pacific Grove triathlon. This itself had brought up a lot of emotion for me because of everything that happened this time last year, and the reason why we had missed the race a year ago came flooding back.

“Lifeguards, lifeguards, lifeguards!!” a cry from the beach and my entire being switched focus. I turned to see a truly terrible site, one as an ER nurse I dread, and as a person fills me with such sorrow. In the water was a swimmer who had clearly stopped swimming and was laying face down in the water. My stomach sank as I thought about the family that would soon be hearing that something was very wrong with a dear loved. I was impressed by the quick response by what I assumed to be a bystander on the beach who had thrown off his shirt and swam in, and the reached the swimmer quickly. As any ER nurse I watched the response by all of the emergency personal and was truly impressed by how quickly and efficiently they had started CPR and even appeared to open the patients airway and appeared to have initiated intubation right on the sand. As the ambulance pulled away a few minutes later I paused and sent up a quick prayer for everyone involved and my heart ached for a family that I knew would be receiving some terrible news shortly.
My attention returned to the finish line to await Steve and this awesome moment that I was anticipating. My phone started ringing and I saw that it was my dad calling and words that I have never anticipated were spoken from the other end of the phone. “The race just called and said that Michelle was taken to the hospital” I stopped breathing. What? My sister? The fitness instructor? The one that runs 7-8 miles a few times a week? No, someone has made a mistake I was sure, someone had her mixed up with someone else. The directors of the race find me and tell me yes that was Michelle that they were working on down on the sand.

It’s cliché to say that you go numb and your mind goes blank, but there is no other way to describe such a moment. I couldn’t think or breath properly. I have to thank everyone involved in Tri-California because over the next few minutes they got me, Steve (informed of what happened a few seconds after he crossed the finish line) our friend Brian, and Evangeline all to the hospital. From the finish line we went straight to the hospital.

We walked into the doors of the Emergency Department and were immedialty taken to the “quiet room”. As anyone who has ever worked in a hospital can tell you, this is the last room that you want to be taken to as a family member. Good news is rarely given in this room. This is the bad news room. When the ER doctor walked in to talk to me my first question was is she alive? 

“YES.” O.K. Small breath. 

Is she responding at all? “Yes, she was trying to pull out her ET tube before we sedated her.” O.K. Second small breath.

The ER physician proceeded to tell me that they had decided to place her in a medically induced coma and perform therapeutic hypothermia to try and prevent brain damage after cardiac arrest. She estimated that she had a down time (meaning no pulse) for anywhere from 20-25mins. There was nothing to do at this point but wait and pray. Something that will forever be seared into my memory is the nurse who came with the physician to talk with us, shared my sister’s name.

The next 36hrs were probably the longest of my life. As anyone can tell you that has gone through something like this the worst part is not knowing. Your mind starts to drift down endless paths of speculation. What exactly happened that caused this? Did they get to her in time? Will she remember us? Will she meet her new niece? My mind shifted back and forth between racing and blanking back and forth. I couldn’t help but think of the new life still growing inside of me and wondering if she would ever know her auntie Shelly the way that her sister does. 

Needless to say neither Steve or I slept very much the next two nights. On Monday morning, I then received probably the best phone call of my entire life. 

“Kate, it’s Mom, SHE WOKE UP” I actually physically sank to me knee’s. I took a deep breath for the first time in two days. I felt a physical release from my body that I have never experienced. My mom then tells me that she was trying to talk to the nurse and was writing on paper (due to still being intubated) questions about what happened. I immediately called Steve who was on a bike ride because he was worried and couldn’t sleep. We both stared crying and decided to take Evangeline right to school and head immediately down to the hospital.

It takes a little over on hour to get the hospital from Steve’s work and we spent the majority of that ride talking about how amazed we were by God’s provision. This race happened in the cold temperatures of the bay which helped to protect her brain. The man on the microphone was an Olympic swimmer who noticed that she had a weird kick/swim pattern and appeared she was in distress and called over help before she even stopped moving. The man who had pulled my sister from the water, was an off duty fire fighter/rescue swimmer in San Francisco who regularly serves as a life guard during Tri-California’s Alcatraz swim challenge, on the beach was a neurosurgeon who was spectating and helped get her airway open and suction out a significant amount of sea water. God had put all of those people in place to be there to help her at the first sign of trouble.

When you prepare for a baby you spend nine long months anticipating a lot of different things. What will they look like, is it a boy or girl, when will they arrive, what will their name be? This last question had us stumped for a while during this pregnancy. Everytime we thought we had it down, one of us would come home and say, “hmmmmm I am not sure.” Especially the middle name, at this point Steve and I were literally still fighting about the middle name, and I had pictured a very awkward moment in front of the birth recorder. For some reason  being unsure of the middle name had made us still have a shaky feeling about the first name. I was a little worried that we were going to have a situation like my mom and dad naming me and just not have a name for 3 days.

On the ride to the hospital it became clear that the middle name was just wrong and that is why the first name didn’t feel right. We were in complete agreement, Felicity Michelle was the right name. 

Felicity meaning, “happiness, joy, fortunate” and Michelle meaning, “who is like our God?” 

It had a wonderful symmetry to us because Evangeline’s middle name was for Steve’s sister and now Felicity would be for mine. A couple hours later I was standing in the room with my sister who was still sedated and would be slowly weaned off the ventilator/sedation over the next 24hrs. I stroked her head and whispered in her ear that she had to get better soon because her niece was coming in the next two weeks and she needed to meet this new person. I sat down at her bedside and felt my water break. I looked over at my dad and said, “Either I just peed my pants or…”

Like any good father he grabbed my arm and almost yelled, “you did not pee your pants you need to go now!”

We found Steve and my mom in the ICU  waiting area and made the decision that although I was not having any contractions, we should probably head back over the mountain to make use that we were close to the hospital when I needed to go in. We got into the car and Steve started driving and within about 15 mins I told him, “No, just go straight to the hosptial, this is definitely full labor just go straight there.” 

Another 15-20 mins rolls by and I look at him and tell him, “you need to drive faster!” (I am not sure if I was that polite in my request you will have to ask Steve) We got to the hospital and with little fuss or difficulty she was born a few hours later. 

I couldn’t stop thinking that these two will forever be linked. The niece that was born the day that her aunt, against the odds woke up. It has been 5 days since this happened and I don’t think I have fully processed how much God’s touch was on our entire family over the last week. Every day since, Michelle has made incredible progress, walking, talking, eating, and has the ability to do all her own care like brushing her teeth, combing her hair. She is still struggling with memory and being over stimulated so for now if friends and family could continue to give her space and keep well wishes to just her Facebook account that would really help. Trying to respond to texts and e-mails is simply too overstimulating at this point in time. I am sure Steve will post here on his perspective on the last week at some point, but for now he let me take over the blog for a day to share the amazing story of God’s provision and faithfulness in our lives. It has become our family motto in a lot of ways through good times and bad, but “God is good all the time, all the time God is good.”


Kate Dang

Kid Friendly Food Tours and What I Learned about Life from Disney

With another daughter on the way in a few weeks, I decided to hit the road with G-Money to spend some quality time together before my heart starts making room for one more. Now that my brother is home from Korea and working in Los Angeles, a land with warm beaches, hot weather, and delicious food, I really could not think of a better place to spend four focused days with my daughter.

Between sitting on the beach and driving the city, Evangeline and I went on our own post-gastrectomy food tour sampling the finest coffee roasters the Southland has to offer paired with some delicious toddler-approved fare. Our first stop was at a Japanese-American fusion burger joint called the Humble Potato  known for their version of the American classic which they call the hambága. Since I no longer eat red meat, I decided to go with the Tempeh with Karê which is an Indonesian soy patty chopped up with an Indian tasting spice/curry over slaw with a fried egg on top. Do I miss eating burgers? Absolutely, but living in California means there will always be plenty of options. For those who know me, food tours are incomplete without visiting new coffee shops. Before getting off the plane I knew I needed to pay homage to the place that combines my two passions: motorcycles and coffee, Deus Ex Machina in Venice Beach.IMG_4265 Deus Ex is “hipster” in every sense of the word which means plenty of mason jars, restored wood, beards and custom built café racers. If you want a $40 t-shirt only other motorcyclists will understand, this is the place to go. The top coffee spot on our tour, however, goes to what OC Weekly dubbed as the finest coffee roaster in 2015, Portola Coffee Lab in the swanky gastronomic haven located at the OC Mix. After a quick Gibraltar, we sampled various cheeses at a neighboring cheese bar. One of the perks of a stomachless life is how surprisingly satisfied you feel from eating samples especially something as calorie dense as cheese, nuts and coffee.

As a bit of a nutritional aside, while this past year and a half has been quite a nutritional odyssey; battling stints of hypoglycemia (there is a very interesting article on this syndrome as it relates to total gastrectomy patients and b12 deficiencies which can be found here), I have found it best to keep my carbohydrate intake around 100 grams a day and proteins over 100 grams which, in general, keeps my blood sugar spikes to a minimum as long as I stick to complex, natural low-glycemic carbohydrates like sweet potatoes and fruit. When I want to splurge for my ice cream fix, I make sure to take it out of my carbohydrate allowances for the day. Staying within 100 grams of carbs has been holding everything in balance and keeps me honest so I don’t get dumping syndrome or hypoglycemic when my insulin levels spike. In a lot of ways, I really have learned a lot from the diabetic community in regards to my blood sugar balance. As for my weight, even with triathlon training, I have been consistently between 160-165 lbs for the past few months.

After the unexpectedly pleasant pairing of cheese and coffee, we made our way back to Anaheim to visit an upscale food court known by locals as the Packing House where we met my brother and his wife for a gourmet hodge-podge of kid-friendly fare which included southern style chicken wings, mac and cheese, fries and the fanciest popsicle stand you have ever seen. Pistachio gelato popsicle dipped in dark chocolate mint covered in hazelnut and coconut shreds? Yes! Between the live music, dancing with my daughter to a Mumford and Sons-esque rendition of “I Want You To Want Me” and epicurean popsicles, I would say day 2 of our trip was a success.

The remainder of the trip was spent at “happiest place on earth”, Disneyland. Outside of being the hottest weather of the year, we had an amazing time just the two of us. As a kid I loved Disneyland, but it’s hard to quantify the pure joy of seeing your toddler ecstatically chasing after Woody, Mickey and Elsa as they walked around in a sweaty suit. What made the trip even more special was randomly running into some friends from home, a couple former students, and reconnecting with a good friend I made on my trip to Israel in 2012.

After a long day in the park, I had given Evangeline a shower, put on her pajamas and was starting our bedtime routine when she paused and asked me, “daddy, where is your daddy?”

The question literally made me tear up immediately. After everything that we experienced over the past four days, this question flooded my heart with emotion. Evangeline is fortunate enough to know both Kate’s parents and my mom, but for the first time she realized that she had never met my dad. After a few seconds scrambling to think of an age appropriate response to a two-year-old, I decided to tell her the truth, a topic Disney has never shied away from addressing. From Big Hero 6 to Inside Out to Bambi, Disney has never been afraid to talk about the harsh realities of life and death. In that split second between Evangeline’s question and my response, I distinctly remember wrestling with the feelings I had watching the stampede scene from the Lion King about a year after my dad had passed away.

Conjuring up all the tender love I could, I put her in my lap and said, “My daddy got really sick when I was little and he died.”

“oh…”, she responded. I could tell her little mind was trying to understand.

Recognizing there will be many more conversations over time, that night, I just held her close and said, “Daddy loves you very much and you don’t have to worry. Because I have this scar, daddy is going to be around until you’re a young lady and I’m an old man.”

I followed this up with lots of kisses and hugs before putting her down in her crib. As I shut the door, I said, “I love you” one more time and sat on the couch reflecting on 31 years of life and put the past year and a half of hypoglycemia, dumping, sweating in movie theaters, spitting up, and intense stomach cramps into perspective once again because of one honest question from a daughter to a father.

Fight on,


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…