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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Lessons Learned #1: Sunny Side Up

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“you’ve got this.”

Yesterday, our gastroenterologist ran into Kate at the hospital while she was working. Kate told him about the past four weeks including the Meckel’s Diverticulum that had gotten infected and removed. The doctor said something that surprised both of us: the Meckel’s Diverticulum is made up of both stomach and pancreatic tissues, which means that I could have developed stomach cancer there as well! Was their a silver lining in getting split open again? I’d say so. This brings me to a topic that I’ve been thinking about the past few weeks.

It has been 7 months since my total gastrectomy and since then, I have had a little bit of time to reflect on the things that have made the biggest difference for me during recovery. I think having to go back in for a second and possibly a third surgery has made me think more about what I might do differently going back around. So for the next few weeks I’ve decided I’m just going to focus on re-do’s, lessons learned and looking forward. Perhaps my other friends can chime in, and please feel free to add your own input. After dinner with Kyle and Marne last week, I think for me, finding hope and positivity in the midst of the unknown is huge.

When I first learned about CDH1 and hereditary gastric cancer, my head was spinning trying to wrap my mind around this idea that modern technology cannot detect diffuse stomach cancer. Even further, to learn that my sister’s death was due to “leather bottle stomach” or linitis plastica and the fact that the gene mutation in my family line is so grossly flawed I thought I had a death sentence. My sister dead at 22/23, my dad dead at 38, and turning 30 this year meant the odds were not in my favor. When my surgical team sat me down to discuss the consequences of a prophylactic gastrectomy I thought my life was going to be over. The surgical team focused on what I would not be able to do anymore: no steaks, no triathlons, no energy, all paired up with life long malabsorption/nutrition issues, chronic nausea, and constant stomach pains = no fun. While life without a stomach comes with it’s challenges, my life is far from over. I’m not super human. I do not have extraordinary courage. I don’t have this inordinate sense of resolve. I’m not a saint. I still struggle with frustrations and set backs just like the next person. There have been days when I feel like I have spent most of my day around a toilet. There were days when chugging too much water makes me feel like I am choking, but I do not want this to be what defines me and I take hope in the fact that tomorrow is going to be a new day. Soon enough, you begin to string along two or three good days in a row and it gives you enough hope to get through the next set back.

Personally, I had to leave certain forums and groups because every day there were posts about the struggles of a total gastrectomy/stomach cancer. This is not to minimize what they are going through because let’s face it: the struggle is real, but for my morale, it can turn a bad day into a worse day. For me, it’s embarrasingly easy to get sucked into feeling sorry for myself when I have a bad day, so I had to do what is best for my mental wellbeing. Finding Marne‘s blog who was able to go back to running like Forrest Gump, and then Rachel‘s blog who is still enjoying the transcendent nature of food again, and then Canadian Rachel‘s blog about (said with a Canadian accent of course…) amazing ramen bowls, enjoying whatever it is that they do up north after TG, and then reading the story about Brian Kaminsky the BMX’er who was able to get back to competition, strung together enough stories to give me enough hope to keep moving forward through the bad days.

Kate and I have an inside joke that whenever we go and meet with our surgeon, he always makes some funny dietary/nutritional suggestion that is so vague, but genuine… Our personal favorite is something he suggests literally every time he sees me: “you should try eating more eggs.” Rock on Dr. N, we’ll make it happen.

So here is my first lesson learned: keep the sunny side up.

Facetime

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Meeting Marne and Kyle for the first time!

If I have learned anything through this whole process, it’s that the stomach-less community is tight. Yesterday Kate and I got to meet Marne and her husband Kyle for the first time. A couple of months ago, Marne reached out to us after finding out that her work was sending her to San Francisco for a quick trip so we coordinated to meet up for dinner. The past few weeks of set backs almost foiled our plans, but I was glad to be able to make it work. Marne’s blog, “Life without a Stomach” was the first we came across that gave us hope hereditary diffuse gastric cancer was not going to rule our lives and life without a stomach was possible. As my other stomach-less friends will attest to, life without the stomach can be very difficult with unique challenges to walk through, but having other people walk the same path is no doubt encouraging. Somehow chronic nausea, fatigue, malabsorption, and digestive issues get a little easier when someone says, “me too.” In other ways, it’s helped us to really figure out when there is a problem, for example, my stomach cramps. No one else was was feeling the gnarly cramps I had in the same exact spot over the past 6 months, which prompted Karen from No Stomach for Cancer to reach out and question if there was something else going on. This whole time I thought it was just dry breads, but who would have guessed it was my Meckel’s diverticulum getting infected, intermittently cutting off blood flow to my bowels and trying to kill me. All of the experiences, while they can be unique, have really helped Kate and I navigate the unknowns. The shared learning from the hundreds of doctors appointments the community has gone to has been incredibly beneficial. This morning on Rachel’s blog, “Foodie with No Stomach”, I learned from her nutritionist that taking calcium and iron reduces the absorption of both! What?! Who would have thought?! It’s like a group project that actually works! 

Truffle fries from Umami Burger

It was really nice to be able to sit down to a meal with people who really know what we are going through. As we shared delicious truffle fries, tater tots and gourmet burgers, we also shared stories about losing loved ones; fathers, aunts, sisters, and so on. It was crazy to realize that for so long we thought our stories were unique, but now we know there are literally people all over the world who have gone through the same exact thing and it has a name: the CDH1 gene mutation. I was most excited for Kate to meet Kyle, Marne’s awesome husband. Often times I fall into the trap of thinking that I am the only one going through this since I am laying on the hospital bed, but our families and our spouses bear the burden with us. The truth is HDGC touches more than our bodies, it affects every area of our lives: financially, physically, socially, mentally and even spiritually. Often times laying in the hospital bed leaves our loved ones to deal with the fine print in life. So for all the caregivers and spouses out there, I give you the blogosphere fist bump for being strong when we are weak. It was also pretty fun to eat with someone else who eats as slow and as little as I do! Two to go boxes for half of this tiny, but delicious fufu burger with a parmesan crisp and fried egg? Yes please! And the best part? No judgement on the side.

The Holy Grail… from one of my favorite movies, Indiana Jones and the Last Crusade

As for my health: we met with my surgeon yesterday who was pleased that I had gained about 1.5 pounds in the past week and the medication for my bile reflux has been helpful. I don’t know exactly what was served in Holy Grail, but I’m pretty sure it was carafate, which is literally, a godsend for bile reflux. We’re still working on my weight, shrinking the gallstones with medication and trying to control the nausea especially with the zofran starting to lose it’s effectiveness, but recovery looks like it’s going to be on the up and up. In two months I will have to go back in for an ultrasound to check on the status of those gallstones, but hopefully I will not have to go in for a third surgery. As for my weight, every time I think about a TPN line going into my chest I force myself to eat another bite. On a side note: I was able to eat a piece of dry toast this morning without an issue, so maybe that second surgery is going to really expand my diet! Woo! In the next week I’m going to be really working on my energy levels so I can start going back to work, so I’m going to be increasing my early morning spinning time and intensity.

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I wake up automatically at 6 AM, every morning… why? I don’t know.

Cheers!

-Steve

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The Lottery Continues

Well, it took me a while to write this one because to be honest, the number of times I’ve had to go back to the hospital has been embarrassing. This past Tuesday night I spent 8 hours throwing up bile and had to get admitted once again on Wednesday the next morning. I decided I wanted to go to Kate’s hospital this time because I just needed more personal care than I would get at Stanford. We wanted to go back to a place where we know everyone at the hospital, and Kate would not have to drive forever to come and be with me. I was so sick this time that I do not think I would have made it to Stanford in the middle of rush hour anyways. When we got to the hospital, our nurse Pamela (whose wedding I officiated a couple months ago) could not have given me phenergan fast enough. I had thrown up at least 20 times at this point, and with the bile really irritating my throat had not slept at all that night so the phenergan knocked me out like I was medicated by Michael Jackson’s doctors (sorry, too soon?). The sleep was very welcome relief from the pain in my throat.

The doctors ran some tests and this time showed that I still have an ileus and that section of my bowels is still asleep and being lazy! They can’t figure out why exactly, but the doctors think my body is just taking extra time to go back to normal and will pass eventually. Some ileus’ can last up to three weeks apparently! The tests also showed my liver levels were higher than normal, they thought it was from throwing up, but wanted to do an ultrasound just in case. So the next morning I went in for an ultrasound (yes, the same one they use for pregnant women) and after a period of silence by the technician, I asked, “so how’s it look?”

He paused and said, “you have gallstones, the doctors will come and talk to you… But the way you get rid of them is through surgery… I’ll call transport to come get you.” And then he left me in that room for 15 minutes by myself. Gallstones… I really do need to buy a lottery ticket. I’m not sure what other stones my body can grow at this point, but I would not be surprised if I could grow pearls. It’s hard to imagine what else could go wrong in my abdomen at this point, but it’s life and what I have to walk through, so here we go.

I don’t know why, but a verse from a worship song came to me in that moment and I just started to sing through some tears, “I may be weak, your Spirit’s strong in me, my flesh may fail, but my God you never will. Give me faith, to trust what you say, that you’re good, and your love is great. I’m broken inside, I give you my life.” And since that morning, the truth in those words have been what Kate and I have clung to with all of our heart, soul, mind and strength.

The next step was to head into a long 2 hour test called a HIDA scan. For the scan you lay under a machine with very little cushion for your butt (especially for my flat asian butt) and pump your IV with radiation which makes your gallbladder glow and constantly take pictures to see what’s going on in there. With all the radiation I’ve had this month, I’ve accepted the fact that I may grow a third eye in the middle of my chest. The good news is that while I have gallstones, my gallbladder is not infected which means I did not have to go back into surgery right away. This is good news because they really did not want to have to go back in so soon after my other surgery and I could go back to Stanford where they know the new layout of my bowels like the back of their hand.

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I think both my girls like me again.

They sent me home later that night and I actually got to spend a Friday at home for the first time since this all started on September 11th! I decided I wanted to get out and enjoy that thing they call “sunshine” with my family. These past few weeks have made me realize how easy it is to take little things for granted like sitting around a table and eating breakfast together. Since it has been so long since we’ve done anything with Gmoney, we took her to the zoo for a bit and went on some rides where she rode solo for the first time!

Later Friday afternoon we had a follow up with Stanford where we filled them in on my last hospital visit and the new hitchhikers I have in my system, the gallstones. The gallstones most likely developed because of my rapid weight loss in the past few months after my gastrectomy. Since my gallbladder is not infected, the doctors prescribed me some medication that will hopefully shrink the gallstones so I won’t have to go to surgery right away, if at all. Right now, however, what the doctors are the most concerned about is my weight since I’ve lost about 14 pounds in the past three weeks. Since coming home from the hospital for the fourth time, I have been VERY gun-shy around food and have stuck to mostly liquids, but unfortunately is not the most nutritious. The worst case scenario at this point would be to put in an IV that goes into my chest called a TPN line which can give me proteins and other nutrients until I am back on track. Along with our surgical team here is the game plan we came up with for right now:

1. Get me to go a week without having to go to back to the hospital.

2. Try and shrink the gallstones with some medication and return for another ultrasound in three months. I was also prescribed some medication to help thin out the bile so when I get those gnarly episodes again I can at least protect my esophagus from getting destroyed. They told me protonix would be useless at this point since I do not have a stomach, but I’m not taking any chances, those episodes are awful. 

3. See if I can, at minimum, level out my weight or put on a little bit by our next follow up appointment next Friday.

Each time we go back to the hospital Kate and I feel like we want to withdraw from our community even though we know that is the opposite of what we should be doing. It’s hard not to feel like a burden in these moments, but our community (you) have been incredible as always.

So we wanted to give a special thanks to everyone who visited us in the hospital, brought us meals, took care of our house/dogs, took care of Evangeline, started prayer chains, dropped us encouraging messages, and the other various ways you have reached out to us. I’ve been particularly surprised this go around by the people that God has brought into our lives from unexpected places and whether they have known it or not, have been super encouraging! Thank you for not giving up on us. It means the world. Thank you for being our strength when we feel like we have nothing left. Thank you for not withdrawing from us even when we’ve wanted to withdraw from you.

Graces,

Steve

 

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Going for her first solo ride in the SJPD themed police car.

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Note to self: getting G to understand the concept of waiting in line before going on a ride is going to be difficult.

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Trying not to take for granted the little things in life.