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.

Third Time’s a Charm

Well, this blog post took me a little time to write because I ended up back in the emergency room this past Tuesday (I think it was Tuesday, my memory is a little hazy). After being sent home after my second surgery I was doing fine until I started getting the same stomach cramps I had with my bowel obstruction with equal intensity only this time there was a new symptom: I started violently throwing up bile. I felt like lava was flowing up my esophagus for 3-4 hours. Our doctor told us to go to the ER which was, hands down, the worst 45 minutes, ever… and I’ve been on a 6 hour bus ride in Cambodia stuck in traffic with massive food poisoning. With a mixing bowl in my lap to throw up in and enduring terrible stomach cramps we hauled buns to get to the ER. Graphic, I know, but it’s true. The amount of skill it takes not to tip that bowl in a moving vehicle takes some talent. When we got to Stanford the emergency department was like Disneyland with people lined up outside the door. Can I get a fast pass? No. There was no place for us after we checked in so Kate wheeled me into a corner and waited for a bed to open.

After the emergency doctor listened to my chief complaint, she said, “I think you have another bowel obstruction”. I broke down at this point. A grown, 30 year old man, I just wept. Again they sent me to get a CT scan which revealed two things: a non-mechanical bowel obstruction called an ileus, AND a kidney stone! I need to buy a lottery ticket with my luck! Let’s hope the radiation from the 6 CT scans in 6 months doesn’t cause me to grow a third eye or something.

Everyone Poops by Taro Gomi

An ileus comes from a temporary paralysis of the bowels that can happen after surgery. The anesthesia given to me during my second surgery left my bowels partiality paralyzed after they released me from the hospital which meant that I could not get rid all the excess waste in my system, hence a non-mechanical obstruction. Like a plugged up drain, your system starts to freak out and the extra waste in your system starts to poison you. Symptoms include: cramps, nausea, and vomiting bile. Check, check, and check! You and I will never read, Everyone Poops the same way again!

The doctors treat the ileus by putting me on a “nothing by mouth” diet, Roto-Rooter me, hook me up with fluids, pain and nausea medication for a couple days and then slowly move me to a liquid diet until my bowels start to function well again. The first couple days in the hospital were pretty miserable. I was in a considerable amount of pain and the nausea just kept coming in waves.

The next issue was to get rid of the kidney stone. Lucky for me, the kidney stone was only 2mm and could pass through without too much discomfort. The journey of the little urinary asteroid from my kidneys to my bladder was pretty painful. Stabbing pain and my old friend nausea lasted for about a day. The doctors put me on a rapid drip of saline to flush out my system. After the kidney stone passed, I started feeling back to normal again aside from the incision pain which is still to be expected. The incision pain down from my belly button to my waist line is the most uncomfortable, you never really realize how much you use those muscles for everything!

IMG_2792On this third visit, I was determined to wait and not push to get discharged before I was 100% sure that my bowels were back in working order to avoid a 4th visit. When you start to know all your nurses and the other patients in your wing, I think it’s time to get a rapid rewards card for your hospital visits. To the best of my ability, I tried to “enjoy” this third visit and seized the opportunity to reflect, heal and rest. When I was cleared for a liquid diet which included (most importantly) coffee, I made it a routine after the daily visit by my surgical team at 6 am, to walk down to the hospitality area where they always had decent coffee, comfortable chairs and a big window that over looks an arboretum to read the newspaper, Scripture and a couple chapters of a book, which happens to be a fantastic book about solitude and reflection, Sacred Rhythms. The most difficult part about this visit was being patient and missing the two loves of my life: Kate and Evangeline. This time around Evangeline could really tell that her dad was not around and her behavior has really been out of sorts. I think for the next couple weeks we’re going to really try and get back into a rhythm again in all aspects of life. My favorite part of this hospital stay was simply having my girls come down for an impromptu movie night with the three of us cuddled on the hospital bed to watch Evangeline’s favorite movie and letting her eat my graham crackers.

So as for now, patience is the mantra. I have to fight that urge within me for life to go back to normal as soon as possible and risk taking short cuts, I blame my asian drive. My surgeons for the past couple of days sat me down for a straight talk urging me to slow down in all aspects of life which includes backing off on triathlon training for a while and work to focus on my nutrition. As he’s said, “your digestive system has endured 6 traumatic events in only six months, it’s going to take a lot of time to get it all back in order, and right now, going back in for another surgery would be something we want to avoid as much as possible… you’re young and healthy, but the body can only take so much.” They have also suggested that I back off on my diet and go back to a simple diet like I had one I first had my gastrectomy in March. Lots of soups it is. One of the big concerns he had was regarding my rapid weight loss since I’ve lost 12 pounds since coming in two weeks ago. Leaving the hospital yesterday I was under 150 lbs, which is the lowest I have been maybe since 5th grade. It’s still crazy for me to think that I would ever have to worry about being too skinny when I’ve always been a big guy. At my heaviest, I was 240!

So, we’re restarting, again, but patience is the name of the game.

Graces,

Steve

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On the left: June 2008 (240 lbs). On the right: July 2014 (160 lbs).

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As soon as I could drink coffee again, I made it a routine to walk down to the hospitality waiting area where they have comfortable chairs, big windows and decent coffee to read the paper, Scripture, and a good book.

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Restarting my diet. This is a cream based soup made with chicken broth, heavy cream, italian chicken sausage, potatoes, and spinach. Quite tasty and high in calories.

6 More Inches of Story

Well, that one was one crazy week. I get a bowel obstruction, find out I have a hernia, an extra organ that only 2% of people are born with, had a hand full of doctors at two different hospitals look at my CT scan and say, “I don’t know”, take an ambulance ride up back up to Stanford, go home only to slip back into excruciating pain, return to Stanford and head right back into another full open surgery.

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Getting ready for another wide open abdominal surgery. Don’t let the face fool you, I was pretty upset.

Let me be completely honest: the surprise, the rapid regression in my health, the pain, the nausea, paired with the progress I thought I was making the past six months made this round much more mentally difficult than anything else. Feeling prepared to run a triathlon and imagining myself crossing the finish line as a symbolic gesture of putting CDH1 behind me came to a screeching halt last Thursday is demoralizing. Instead of getting my transition pack ready, I was now mentally preparing to go back to surgery, again. I would be roaming the halls in the same wing of the same hospital, again. I would wake up after surgery with the feeling of being on fire, again. I would look down at a scar that was finally starting to heal only to find that they opened me all the way back up, again. All this makes me feel like I am starting all over, even though I am not.

The past couple days have been really difficult, even though physically, I feel like it has been easier. The other night I could not sleep with incredible amounts of gas pain which can only be relieved by passing gas. I did what every post-surgical patient does in recovery, walk. For some reason the gas pain always ends up in your shoulders and hurts like a BEAST. In some ways, it hurts more than the incision because at least the dilaudid takes care of the surgical pain. That night I roamed the halls at Stanford with anger and frustration.

Let me be completely honest one more time: I was feeling sorry for myself.

The last I checked, feeling sorry for yourself never gets you anywhere. It just eats at your soul and makes you more bitter, angry, and leaves you feeling like somebody owes you something. That’s healthy. Not. But, this was where I was, at the bottom again.

At the peak of my pity party, I passed by a couple rooms on my floor where two others were dying of cancer that night. Reality check.

“Someone always has it worse than you.” “Everyone dies.” “It’s not what we face, it’s who we become when we face it.” “The crap will hit the fan (awful analogy, I know), over and over and over again in life, so it’s a not about what challenge you face, but how you choose to walk directly through it.” “If you’re going to enjoy the beautiful things in this life: butterflies in your stomach with your first kiss, the feeling of your stomach in your mouth the first drop on a roller coaster, the nervousness you feel on a first date, the first bite of an incredible meal that literally makes you close your eyes so you can focus all of your senses on the food you are eating… it also means embracing the really crappy parts about this life like stubbing your toes, being rejected by a girl, throwing up after you’ve had too much roller coaster action, bad meals, and yes, even death and cancer.” These are my own words.

They all flooded back to me in that moment. Yes, I’m listening.

I can’t explain it, I can just say that it sounds condescending, but I had this thought that people everywhere would love to be in a position where I’m at. I don’t have a stomach… so what? So I can’t eat everything in the quantity I want… yes? So, I feel like I want to throw up until my insides are empty… big deal. There are so many others who have looked at their situation and said, “ok, let’s do this thing… It’s not ideal, but it’s useless wishing to be in someone else’s shoes, or being bitter that you didn’t get dealt a different hand in this life.” I came back to my room, sat on bed that probably costs $8,000 for me just to sit on per day, looked at my scar and said, “it’s six more inches of story to tell.”

The only option we have in this life is to walk straight through these things. My faith in God doesn’t make me immune. God doesn’t owe me anything. I just know that He’s going to help me put one foot in front of the other. Tragedy makes you take a good hard look at what you really believe about God, let alone life, love and (fill in your philosophical metanarrative here). My faith does not leave room for karma. I don’t deserve good things in this life because I’m a nice person. That leads to resentment and confusion when you face tragedy. My faith does not leave room for, “why is this happening to me, because I do things for other people.” That just leads to bitterness feeling like God owes it to me and my faith in God is not any deeper than my faith in Santa Claus. My faith does, however, promise that God will not abandon me in my hour of need even if it means I’m dying right then and there. My faith in God means that sometimes my trust in God won’t always line up with my understanding of God and the “why” of what’s happening. This allows me to shift the question from “why” to “how”. This question allows me to shift from defeat to trust. Easy? Hell no. Just a bit easier, heaven’s yes.

Look, I’m a pastor. It doesn’t give me special privileges. I don’t get “backstage passes” with the LORD. It helps give me perspective and an opportunity to walk with others going through the same crap I go through in life, encouraging them, and celebrating the awesome parts together.

I have another six inches of scar that will tell another story. I have another 4-6 weeks of recovery from being opened back up. Maybe this is an opportunity for me to regain some perspective, rally, and get ready to keep encouraging others in life’s journey so that one day when I’m in one of the rooms breathing my last, I can hope the past X amount of years of my life was spent doing exactly what God has always called me to do: walk with Him the best I know how, love others the best I can, as faithfully as I can.

Graces,

Steve

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On the left: my first surgery. On the right: my second surgery. On the second surgery they started 3 inches above my belly button and went down 3 more inches past my belly button. I was hoping it was going to be laparoscopic, but oh well. 4-6 weeks of recovery.