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.

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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.

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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!

-Steve

Bad vibes… for my intestines

Lessons Learned #4: Take it all in

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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.

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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.

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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

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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.

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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.

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24 hours from sea to our plate

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Pork belly with kalettes

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Moroccan spiced braised lamb shank

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Mussels in a buttery white wine and bacon sauce

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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.

Graces,

Steve

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

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Crab salad taco and a flank steak taco

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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.

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

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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

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Preparing to say ‘farewell’ to my stomach

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February 2014

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The farewell stomach tour was worth every penny and every calorie

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March 2014

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

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April 2014

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

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May 2014

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Small, but mighty portions. Hello appetizer menu!

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June 2014

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No reason to be afraid to cook

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July 2014

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

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August 2014

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

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September 2014

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Living without a stomach has made me a better cook

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October 2014

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Coffee makes the world go round

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November 2014

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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.

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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!

Cheers!

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-Steve

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.

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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.

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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.

Love,

Steve

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Merry Christmas from Steve, Kate and Evangeline Dang

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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.

Graces,

Steve

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Celebrating Austin’s 25th Birthday with a homemade cake

 

 

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The Dang Brothers

 

Lessons Learned #3: You Do You

On my third hospital stay, I was pretending to be asleep when the team of young doctors told my elderly roommate he had an inoperable tumor. I wanted to just walk over and hug him. Laying there, I couldn’t help but to imagine myself receiving the terrible news. “You’re dying.” I believe their words were, “you aren’t a spring chicken anymore, if we operate, it could be game over, do you understand?”

“Unfortunately, yes.” He responded.

I really hope my doctors never say things like, “‘spring chicken’ and ‘game over'” in connection with the end of my life. I wish that I could have held his hand when he received this news. I awkwardly made eye contact with his team as they walked by wondering what I would think and feel in this moment. Regret? Guilt? Fear? What would I redo? What would I do next?

I got up to use the bathroom as an excuse to see if he was awake, but he wasn’t.

I don’t know why, but during my hospital run over the past month I was surrounded by death. I know it is just the nature of hospitals to deal with end of life care, but it’s a reality we all would rather walk around than acknowledge. Even though we might know (spoiler alert) that we are all going to die at some point, we don’t usually give it much thought.

With the end it mind, I think it forces you to look at your life, now. By far, this post has been the most difficult to write because it’s a personal reflection on the death… or rather I should say, life. I know everyone deals with death differently and I want to be sensitive to those who are literally walking through the valley personally or with a loved one. I pray that you might receive a tangible sense of comfort in the infamous words of David in Psalm 23, that in the midst of walking through the darkest of valley, fear no evil, because the Lord is truly with you.

Just as a disclaimer, this post is far from resolution and I expect it to evolve and change, so please excuse the half-baked cake taste you might have in your mouth after reading this post.

The kids have a saying these days, “you do you”. While they use this as an off-hand remark about a person’s selfish desire, to “do what’s best for them”, I think there is something to be said about this idea that we control how we respond to the uncontrolled elements of our life. So in this spirit, these are my thoughts:

1. I’m mortal, but can’t let that excuse selfishness. It’s easy when facing death to just “do you”; to do what you want, when you want. The feeling however, is normal. Shoot, I had to face this. Laying in that bed listening to my roomie receive his prognosis, there was part of me that just wanted to quit my job, move myself to the middle of some tropical island, sell my house and buy all the things I lust for in this life that make me go fast, but then I was struck with a thought, “really?” The world doesn’t need me to die as another @/$:(% that only thinks about myself in the quest to live by “you do you” as if I was void of all purpose in this life other than blatant hedonism which is probably driven by my own self pity. What would it look like to “do you” without self-destruction? How about doing what you would do if you were driven by love instead of fear? Or a life full of grace instead rigidity? We create our own legacies. As I look at the great story lines of humanity, the ones we remember are often people who recognize to some degree that they create their own legacy by giving their lives away rather than taking what they can, as much as they can, when they can. I’ve been to and/or presided over many funerals, but my favorite memorials are of those who have chosen to pour their life into others. The beauty in the memorial of their life is just a matter of getting out of the way and letting the stories speak for themselves. I think “me doing me” should bring out the best in others, and in doing so, bring out the best in myself.

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Turning my dreams of writing into paper and ink, 500 words at a time.

2. 500 words a day. As I reflected on what this means for my own life, I’ve come to realize how much my life has been dominated by fear. Fear of letting others down, fear of failure, fear of success, fear of regrets, and the list could go on and on. For the longest time I dreamed of writing, but I was afraid I didn’t have anything good to say or that I wasn’t a good enough writer. I’ve realized how silly it is that I’ve always wanted to learn how to cook, but was too afraid of messing up dinner. These past few weeks I’ve decided, why not? I might not publish a New York Times best selling novel or cook at a Michelin 3 star restaurant, but I can blog or experiment with bold new recipes. I’ve decided to write 500 words a day, whether that is in my blog, a journal, or in a Word document, it is time to turn my dreams of writing into paper and ink. As for cooking, the worst thing that can happen in cooking is messing it up and trying again. If it can happen to the best chefs on Cutthroat Kitchen, it can happen in my kitchen. So, if I see something that looks good on Pinterest, I’m going to attempt it. Perhaps for “me doing me”, cooking is a lesson in learning how to deal with failure and writing is learning how to with less fear of being made known.

3. Don’t quit your day job, yet. I don’t think it’s possible to think about your mortality and wonder what you have been doing your whole life. In fact, I wonder if it’s possible to think about your mortality without the urge to quit your day job! But, let’s slow our roll. I think that there is a difference in what I do for work (vocation) and what I feel like I was created to do (calling). I feel blessed enough to say that at this time in my life, what I do for my job is doing what I feel like I have been called to do. There have definitely been moments in my life where a huge gap existed between my calling and my day job. Moments where I was certain of my calling, but was checking the temperature on burgers making sure it was safe to eat according to government standards. On the other side, I think I learned some valuable lessons about serving people joyfully, regardless of my situation. In retrospect, running food out to tables, getting elbows deep in a tub of honey mustard with the world’s tiniest spatula, and making the best looking burger I could make was more about developing my character than creating a “smiling burger”. I don’t think anything goes to waste. None of your past experiences. None of your mistakes. None of your ailments. I think it all speaks to the incredible power of redemption. So, I think “me do(ing) me” means being who God has called me to be, and doing what I believe, He has called me to do, regardless of my situation and what is in front of me. Perhaps “me doing me” in this regard, will leave me with less regret, more joy, and maybe even a sense of completion when I do hear the words, “you’re not a spring chicken anymore”, but until then, I’ve got a job to do.

The crazy group of high school students I have the honor of serving and being called their pastor. Can't think of a better way to spend my life.

The crazy group of high school students I have the honor of serving and being called their pastor. Can’t think of a better way to spend my life.

Grace+Peace,

Steve

Lessons learned #2: Family, Matters

Let’s be real: you’re not the only one going through it. I know, it sounds crazy, but for me it was easy for me to forget this fact and I found myself taking out my frustrations on my family after sitting at home recovering for a few weeks. I would get really short and distant. Apparently you can even get pretty depressed, which is one of the strangest experiences of my life, because nothing is “wrong”, but you feel like everything is off somehow. I don’t know how else to explain it. But here are a few reflections I have this time around:

1. Be clear with what you all need.
For me, I came to realize that many of my frustrations during this time came from unspoken expectations. We all know what happens when you assume, am I right? Apparently my family can’t read my mind. Being clear with what you need is going to save some heartache and vain conflicts. There is nothing wrong with being clear with your expectations around recovery, not just for your own needs, but for each other’s needs. I was talking with my father-in-law yesterday and he was telling me how difficult it was for him to watch me go through the past few weeks because he just felt so helpless not knowing how to help. From my side of the gurney, I didn’t feel like there was anything that anyone could really do, but sit with me. In retrospect, I could have done a better job of letting my family know how much I appreciate them just riding out the storm with me and make it ok to not have to do anything, but be present.

2. Seize the moment(s).
Do something special just with your family during your recovery time. You can’t work, heck, you can’t even lift anything more than 8 lbs, so you might as well seize the extra time and do something to make your family feel special. I took to the kitchen to treat my family with new recipes and even attempt to bake, which as it turns out, was actually tasty. Cooking was a great way to take a small load off my family and make me feel productive, creative even! Take them to the zoo, the aquarium, or to dinner. This is your opportunity to be spontaneous. I saw a hashtag campaign from one of my favorite athletes, Dave Mirra, on Instagram that I have been trying to live by #beadadnotafad. I’m big on social media, I love it, but I’ve been trying to make a greater effort to be in the moment with my family. This means little things like leaving my cell phone in the other room at dinner time and consciously think, “I want to actually live the kind of life that I portray online.”

3. Be gracious with one another.
Take a moment to create pauses in the midst of conflict to call out what is really going on beneath the surface. Turn off the tv and recognize, this is probably one of the most stressful things you and your family will ever go through. You’re tired, frustrated, most likely in some pain, and you’re sick of stuff getting stuck or causing nausea. You and your family are making this transition to your new way of life together. It will get normal, but until then, choose to be gracious and patient everyday.

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