Rejoice, Always. Year Two.

Last Sunday as I was preparing to preach in church, Kate called me before taking the stage to wish me a Happy Gastrectoversary! My second year without a stomach had gone by slipping under the radar of my memory bank which I think captures the normalcy I have found with my new way of life. Things are not what they were, and that is worth mourning for a season, but life has really gone on. Among my stomachless friends, we will say from time-to-time, “no stomach, no problem” when it comes to reclaiming bits and pieces of our old life. It’s our stomachless way of celebrating progress and the simple things: the glazed donut, walking a 100 ft which soon turned to a half-marathon run, the makeover, a complete new wardrobe, a new addition to the family, traveling, the perfectly drawn gibraltar, and the list could go on. This week Marne sent our group a hilarious message, “Sometimes I eat thin mints until I hit a terrible me sugar coma… wink emoticon.” 

It was a beautifully hilarious moment! This amazing group of people have made my stomachless life more than survivable, but enjoyable. Sure, it’s a bummer not being able to eat a pint of ice cream or a sleeve of thin mints, but weighing the cost sometimes makes it that much more pleasurable. Stomach cramps? They come and go. Blockages? they are annoying and painful, but pass. Chronic bowel obstructions? Well, I’ll be honest, this part really does still suck, but at least when I go to the hospital I know exactly what I need: pain meds, zofran because the pain meds make me super nauseous, phenergan because sometimes the pain is so bad I need to get knocked out, an IV for fluids, and four days NPO to clear out that bowel obstruction. “Boom. No stomach, no problem.”

One of my favorite passages of Scripture is written by a man who after being chained, beaten and arrested, encourages a group of people whom he loves dearly with these incredible words: “Rejoice in the LORD always! I will say it again: rejoice!” (Philippians 4:4). I love these words because joy under all circumstances is a choice. It’s a choice that requires courage and perspective. It’s challenging and difficult, but without it, bitterness and resentment will grow like a weed in my soul.

Kate made a passing comment a few months back that has sat with me since, “I don’t think I have heard you have an honest-to-goodness-can’t-breathe-tear-wiping laugh in a long time.” Insert wide eyed emoji here.

Truth is, she’s right and has not been the only one to make that comment in some form over the past couple of years. For the past few summers I have had the privilege of leading a team of high school students and adults to serve with an incredible organization that does projects in Guatemala. Over the years we’ve made some incredible friends in Central America and have come to know each other well. Last summer one of our Guatemalan friends made a casual remark while we were waiting for building materials, “your face, it’s so serious. No more laughing oso panda?”

Maybe it is time to pay attention because it has become clear to everyone else except me that the slowest aspect of recovering life after a traumatic parting of ways with a stomach has not been the scars, but recovering my humor. Somewhere along the line, while I have had a great outlook on life in general, things have taken a bit of a serious turn.

Without question, cancer is serious, but I do not think it should suck the joy out of my life either, which is something I never considered as a side effect of life without a stomach. Overall am I content? Sure. But what happened to that rolling-on-the-ground-can’t-breathe laughter that is a huge part of my personality? I think there might be a picture of my humor on the back of a milk carton somewhere. I’ve spent almost two years now getting my body up-to-par. Many things are still a work in progress, but I think it is time to recover my personality and joy for life again. It is way too easy to get discouraged because like everyone else, it has been one step forward, two back, but I really want to focus on joy and contentment as the next, and perhaps longer, phase of my recovery.

I think the “seriousness” stems from coming to terms with my own mortality which gave me a sense of urgency to accomplish everything right here, right now, but I am beginning to wonder if a new lease on my life should not necessarily mean I need to move at breakneck speed either. My attitude has been to recover as much of my life as fast as I can, but what if I miss what actually matters along the way?

My faith has given me strength to face my everyday challenges these past couple years, but I tend to forget a huge portion of my faith is finding joy regardless of my situation. So tonight, Kate and I are celebrating our 8th anniversary a couple weeks early with an incredible meal at Gary Danko’s in San Francisco and if I have to sprinkle Norco on my duck breast to get through the meal without pain, I will continue to rejoice. No Stomach, no problem.

Grace and Peace,

Steve

Holding Both Views In Sight

This blog was inspired by a friend of mine who gave me permission to write about a picture she posted on Instagram from the window of her room while receiving chemotherapy treatment a few months ago. The image of her IV pump against the backdrop of the mountains in the distance paired with her caption, “Enjoying the view today!”, jarred something loose in my soul.

The picture itself wasn’t necessarily what was deeply moving to me. It was the fact that this image was incredibly consistent with who I know her to be; a woman of grace and courage regardless of her circumstance. Even while navigating her own challenges, she created margin to reach out and encourage us throughout our journey. In my mind, she is characterized by a dignified courage that is nothing short of inspiring. To know people like Chelsea is a divine grace.

I think this image took up residence deep in the recesses of my soul because it perfectly captures the intersection of faith and hope in the face of adversity.

Screen Shot 2016-01-02 at 8.02.07 AMDuring both my interviews with local news I was asked, “how do I keep going?” It’s a common question as if what I have to say next is the “secret sauce” that will unlock the key to understanding suffering. I don’t blame people looking for meaning, answers and/or a purpose in difficult times because we all want to figure out how to walk through those times faster and with greater ease, but I’m beginning to learn that there is no true fast track to navigating those seasons. To boil it all down to faith and hope seems trite and ignorant to real suffering. I think that is what makes the image so powerful to me because it answers the question artistically which is the heart’s way of hearing truth.

I think you can see this picture three ways. The first is to focus on the IV pump; to look at the situation and allow the situation to be the focus. Perhaps any joy and beauty in life has been sucked out in exchange for the incessant beeping of a kinked IV line alarm going off, again. The second is to simply see the picturesque mountains and the sky in the background and completely ignore the IV pump in the frame all together as if thinking enough good thoughts will circumvent the situation. This is to downplay the fact that life can, for lack of a better word, suck in seasons. The truth is chemo sucks. Cancer sucks. And life without a stomach can suck. No amount of good thoughts can take away the prick of an IV starting or the feeling of helplessness watching a loved one undergo radiation. Hope and faith is not a way to avoid tears or sorrow, that would be fantasy. I think this is why I was drawn to this picture, because to have both hope and faith in the midst of adversity is to hold both views firmly in sight. Faith and hope gives us an honest look at the challenges that we face in this current moment and gives us the courage to step forward as we keep adversity in the context of a broader story. It does not erase the weight of suffering or the scope of adversity as if simply focusing on the mountains will make everything go away. True faith and hope holds both firmly in it’s sight; to give perspective and context to what we face currently and the ability to look beyond what we face to see something as normal as blue skies and mountains we drive past everyday in a new light. I believe it causes us to pause for a quick moment and reorient our souls towards something beautiful in the midst of challenges.

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Having insomnia, allows me to see some incredible sunrises.

As I step into 2016, I want to take encouragement from true hope and faith which holds both views in sight. So in the words of my friend, Chelsea, take a moment, regardless of the circumstance, to pause, to take a breath, to notice something beautifully mundane and “enjoy the view today!”

Graces,

Steve

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Ornaments Over Time

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13 years ago Kate and I started a tradition giving each other ornaments for Christmas.  This was a big deal because over 22 years ago today my dad passed away from stomach cancer and the feeling of loss became the dominating story for me around this season. Since we have been together Kate has worked hard to change that story to little avail. Christmas has always held sentiment for Kate so our first order of business as a married couple was purchasing a generic multi-pack of ornaments from Target to fill in our abnormally large Christmas tree because her eyes always taller than our ceiling. I will be happy to report that every year we find compromise between my mini-Christmas tabletop succulent and the mammoth noble fir that requires the services of a bucket lift to top.

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Our first ornament in 2002

As we added Evangeline to our family our two ornaments became three, and this year we will debut a fourth to represent Felicity. As I was decorating our tree a few weeks ago I started to realize that those generic ornaments from Target have slowly receded like my hairline and now our tree reflects 13 years of different stories being written a couple ornaments at a time.  With our new ornaments, I now have tangible reminders that I play an active role in creating the kind of memories my daughters will associate with this season, so what story do I want our ornaments tell? I hope they would not simply represent a highlight reel of our lives, but the slow exchange of heartache and loss which was the dominating narrative for so long, with new stories of love, new life, family and rugged hope. While I cannot change history and life will never be the same without my dad, these ornaments will represent different memories for my two daughters.

God bless you and your families this Christmas,

Steve

Health and life update:

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While their has been relative radio silence (at least on our blog) during this season of our lives, September to December has been anything but boring. I completed my first Olympic distance triathlon in September, my sister-in-law had a near drowning incident at the same race, my second daughter Felicity was born a couple days later, I’ve had another bowel obstruction which required a hospital stay for few days before Evangeline’s 3rd birthday, we raised a little over $1000 for No Stomach for Cancer during Stomach Cancer Awareness month in November where I rode well over 100 miles, was interviewed by a couple of local news networks, spoke at the high school where I started my relationship with Jesus, and now, we’re looking forward to turning the page on what we are hoping will be a “normal” year.

I’ve had a few questions regarding my health, diet, exercise regimen, weight, etc… over the past couple of months so here some of the highlights:

My hospital stay for another bowel obstruction in October has led my (new) surgeon to believe these obstructions will be a chronic issue that we are hoping to control with diet. While we could go back in for a third surgery, it is not a guaranteed fix. In fact, there is a chance it creates more scaring that would exacerbate the situation. The good news is, we are learning when I am having an active bowel obstruction or not and what to tell the hospital when I have to go in. One of the benefits of being married to a nurse is her active involvement in my health. It basically comes down to this: if she can’t control my “vomiting”, I have a bowel obstruction and its time to go the hospital for some pain meds, an IV, four days of fasting, and X-Ray’s only. I’ve had enough CT scans now to power a nuclear submarine for a couple days.

Regarding my diet: I’ve switched to a low-carb (under 100g) high protein diet (over 100g) which helped me regulate my blood sugars which are out of control. I find myself a lot more sensitive to insulin spikes which dips my blood IMG_4949sugar into the 30’s before I switched my LC diet. I picked up a blood sugar monitor to at least confirm whether or not I was experiencing a dip in blood sugar or something else. It has given me a better understanding of my body as it relates to how I am feeling. I will say that switching to a low carb diet was a balance because I immediately lost about 7 pounds and I had to regulate with some low-glycemic index carbohydrates in the form of sweet potatoes and good fats in the form of nuts. I have found myself a lot more sensitive to ice cream for some unknown reason. I used to be able to eat a full scoop without issues, but now I have trouble with a few bites. I’m not sure if it’s related to my new diet or not. I will say that for the first week or so of switching to a low carb diet I felt terrible, known as the “keto flu” as my body switched from burning carbohydrates as its main source of energy to fats. I felt weak and tired, but after a few days I started feeling normal again. During my race season I maintained a weight around 158-162 lbs. Consistent eating throughout my day paired with my training which has slowed in the off-season has seen my weight hover closer to 160-165. One of the cool things that has emerged as I have shared my story are people in the world of nutrition who have reached out to help me achieve my goals. I am now trying out a new way to get all of my fruits and vegetables in the form of powder. So far, so good. I have noticed that the quantity I am able to eat has improved greatly and I can sit down and eat a full chicken breast and veggies without a problem.

Training: During the winter season I keep my training sessions short and sweet focusing on different skills and most of all fun! I still hold to the mantra, “if I feel good, train, if I don’t, don’t.” My long rides can extend up to 2.5 hours without nutrition, but once I start feeling like I have run out of calories, it throws off the rest of my day. Right now I keep my bike rides to about an hour or so and my runs are nice and short, about 3 miles. Secondly, I’m trying to take it easy to balance out my rest and my training. On the nights where I have bad bile reflux (still an issue) or only sleep for 3-4 hours, I try not to train. Insomnia, unfortunately, looks like it’s here to stay for now. As an added benefit, I do get to experience some incredible sunrises every morning on my rides.IMG_5540

In regards to pain, I’ve actually have seen a spike in the amount of pain I have had over the past couple months. Over the past few weeks I have found myself in a lot of pain requiring more and more medication to manage. I’m trying to limit my pain medication to stave off resistance which is a big challenge. There was a stretch where I was getting pain multiple times a week requiring almost double my dosage of pain medication and waiting too long to take medication is not helpful. I cannot tell you why I have these seasons, but I know that they seem to be temporary and I return to “normalcy” rather quickly.

My local stories can be seen here:

Telling a different story, to the world.

NBC Bay Area’s: “Bay Area Proud”

Kron4: Video Tale of a Triathlete with No Stomach

http://kron4.com/2015/10/12/video-tale-of-triathlete-with-no-stomach/

 

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.”

Blessings,

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,

Steve

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 nostomachforcancer.org, 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.

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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.”
Barista:
Me: “hahaha! I get that look every time.”
Barista:
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: calvarylgparents.com.

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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:

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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.

Graces,

Steve

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