Uncharted Territory by Kate

Programming Alert: Kate Dang has stolen this blog post!!

“Hello Boys! I’m baa-aack”! I can’t but help but think about that scene from Independence Day as I sit here next to Steve in the hospital. It literally feels like a bad case of deja-vu sitting here going through this for the second time.  In the last 48hrs things changed pretty quickly.

On Monday at lunch Steve ate really well and I thought that we were out of the proverbial woods. About 30 minutes later Steve started to have some pain and decided to just chill on the couch and take a nap for the rest of the afternoon. I had still taken Evangeline to daycare so we could just keep her routine normal, so I actually was able to clean the whole house that afternoon.  From then on every time Steve tried to eat something he felt progressively worse and I decided to write an e-mail to his surgeon to set up an appointment for the next day. Fast forward another 2 hours and it has become obvious that we are not making it through the night and I gave his surgeon a call (He gave us his personal phone number). He immediately told us to come back in and he called Stanford to arrange for us to be directly admitted to the hospital.

When we got here they had everything waiting for us got Steve comfortable and prepped for the OR. This was at about midnight so they procured for me the world’s most comfortable recliner (sarcasm) and we tried to get a little bit of sleep. The next morning was just a waiting game, first to find a free spot on the operating schedule (9:30am, pretty quick!) and then waiting for the surgery to complete.

This time waiting for the surgery to finish was a very different experience for me. With the last surgery we were so confident in our decision that this is what God had provided and this is what needed to be done that we both didn’t think twice about it. This time there was so much uncertainty as to what was wrong that it made even waiting for Steve’s surgery to finish a little bit more nerve racking. About 2 and 1/2 hours later his surgeon came out and let me know what they had found.

Here is the technical part, Steve was born with something called Meckel’s Diverticulum. What this means to normal people is that he was basically born with an extra little pouch or an extra appendix. At some point in the last 6 months this piece got infected. Most likely from a piece of food that got trapped inside it. When it got infected though it did something a little funny and what happened is it attached itself to the top of Steve’s abdominal wall, then slowly but surely over time his bowel started to wrap around it. Every time he ate, his bowels would try to move the food inside of his intestine through the pipe which would wrap around the Diverticulum until finally it just became blocked (think like a barber pole). This explains both the odd spiral and the bowel obstruction that they saw on the ct scan.This was an easy fix, first they removed the piece that was infected and unwrapped his bowel and then reattached the good ends. This hopefully explains the weird pains that he has been having since surgery that no one could explain for so long.

This time through, surgery has been so different for a lot of different reasons. 1. We were not prepared! Last time we had months to plan for surgery, do the food tour, both of us take time off work, prepare for Evangeline and her needs over the next few months and lastly just mentally to go through this juggernaut that is being in the hospital. 2. We were planning this last weekend to run our triathlon and this next week to go to Pismo for a day to ride ATV’s with our good friends the Yoder’s. (If the Yoder family reads please know that we fully expect to be taken out on the ATV’s on a different weekend!) We had the college tour coming up with our high school students and Evangeline’s first trip to Disneyland. This fall was so full with life really return back to normal for us on so many levels and it is a little odd mentally to be thinking that we are starting all over again.

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This entire process has been all about trust for us.  We have been thinking about how to put trust in God despite the uncertainty of what is happening in this moment. I love what Jesus said about this in Mathew 6. “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life.” I have really meditated on this verse for about a week now. In my current situation it is really vivid when I hear these words. Worry will not extend Steve’s life, plain and simple. He is in God’s hands just like he has been since the day he was formed is his mother’s womb and I have to trust God that his plan for Steve and his life is a good plan, a plan that will bring God glory.

The other image that I keep seeing in my mind comes from the Old Testament. It is of God leading the Israelites out of Egypt. I keep seeing this image of the pillar of fire leading the Israelites out into the desert. If you read on a little further we see that when they get to the Red Sea they immediately become upset with Moses and say “Was it because there were no graves in Egypt that you brought us to the desert to die? What have you done to us by bringing us out of Egypt?”  I feel like this moment has been a little bit like running into the Red Sea for us. Just like the Isrealites, we thought, “Wow! We are finally on our way out of this situation that has been so hard” and you turn the corner and come smack up against starting all over again. I think the reason the pillar of fire image has stayed with me so vividly is because I want to decide in this moment, to confront the Red Sea and know that God is with us, He led us here, and will lead us out.

Going through waiting for surgery yesterday and speaking with surgeon makes me feel like we have crossed over and are headed to the Promised Land. Just as the Israelites found, this journey isn’t easy, but it does mean that I can put my faith and trust in the one true God who has brought us out of Egypt and I will continue to do so. Thank you all so much for you love and support. Steve will take the blog back over when he is feeling better.

Set Backs… and Practicing What you Preach

Set backs are not something I totally prepared for during this process… At least not to the extent in which I would have to come back to the hospital. On Thursday afternoon I experienced some of the worst abdominal pain I’ve felt since I got my stomach removed. It felt like I had gotten stabbed and could barely stand. I knew had a rough week in terms of food and pain, but had no idea it would lead to this getting admitted again… I just thought I was having problems with bread!

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Drinking CT contrast… not the best cocktail

Our CT scan showed that I had two problems. The first was a small bowel obstruction which keeps food and liquids from being able to pass through the bowel. As you can imagine, it quickly builds up a lot of pressure and causes a lot of nausea and vomiting (check) and pain (check).  This happens because a little bit of the scar tissue is pulling on a piece of my bowel, called an adhesion.

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I just can’t get enough…

The second problem is what landed me back at Stanford. One of the arteries and veins that supply the intestines appears twisted on the CT (you can actually see a spiral on the CT).  The blood flow is fine right now, but the debate is whether or not the blood flow is getting blocked intermittently. This could explain the weird pain I have been having since surgery off and on or whether my problem was just the bowel obstruction.  The doctors believe that an adhesion is causing this too, but it is unclear of how to proceed. It is possible that they we need to go back in to fix the problem.  The draw back to this approach is more surgery could mean more adhesion’s that could cause me even more problems.  So for right now we are going to watch me this weekend and decide based on how I am doing what the best course of action should be moving forward.

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my first ride in an ambulance.

Being back in the hospital after feeling generally so good for the past six months is a bit discouraging, and the thought of going back into surgery makes me feel like I’m starting from square 0 again, but if you can do it once, I guess I can do it twice. This time, thankfully, I’m not going to be re-learning how to eat all over again.

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my notes for Insite… hopefully still good for next time

Ironically, I was scheduled to speak at a local ministry called Insite around the topic of “weathering the storms of life”. One of my points, “little graces, one step at a time.” I usually get the opportunity to practice what I preach, but I did not know it was going to happen that day! I have experienced many little graces throughout the past 6 months, and I think it’s even more important to cling to those now. I have to remind myself that I’m really not starting over, just taking a step back, which is a huge difference.

Kate and I are probably the most disappointed about not being able to compete in the triathlon on Sunday, especially after raising $1100 to benefit No Stomach For Cancer. Either way, after the race ends on Sunday, we will be donating on your behalf! Thank you again for all your support and prayers, again!

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How we shower Med-surge style.

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Thanks for all the support!

-Steve and Kate

It’s on… like Dunkirk Spirit

6 months ago I parted ways with my stomach. In about 8 days I’m going to be competing in my first triathlon since parting ways with the vital organ. I have been absolutely blown away by the support that we have received from friends, family and even strangers as we race to benefit No Stomach For Cancer. Our goal was $500, and as of this morning, our total is now $800. We are now hoping to make it an nice even $1k! I got a message a couple days ago from a fellow CDH1 patient from England who decided to contribute the cause, now that’s a show of “Dunkirk spirit”, as they say in the UK! Yes, I had to look that up. According to the British idiom dictionary, “Dunkirk spirit is when people pull together to get through a very difficult time.” Just in case I am using that idiom out of context, we’re just going to say it is for #outofcontextsaturdays.

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Lover’s Point in Pacific Grove

As for the training: last Saturday I broke a personal record running a little over 5.3 miles without a stomach and it felt awesome! I’m a little worried considering the fact that I haven’t climbed into a pool to do laps in quite some time, but I’m hoping the wetsuit and taking it easy will help me cruise past that 500 meter swim. The Pacific Grove Triathlon swim is unique in the fact that you start at beautiful Lovers Point with perfect sand to enter into 63 degree water and swim through a kelp forest. It can be a little disconcerting at first because the kelp starts to wrap around your legs and you can’t see the bottom, but once you get in to a rhythm you can use the kelp to your advantage by “crawling” through it. The good news for me is that your wetsuit makes you extremely buoyant and the kelp means I do not need to be in as good of swimming shape.

My favorite part about the process has been training as a whole family. Kate has been kicking butt and has lost almost 15 pounds in the process! Evangeline is constantly training with us helping us with push-ups, giving us resistance training as she rides in her Burley trailer on our rides, and cheering us on as we push her on our jogs. Yesterday we went for a 4 mile “hike” that turned into a job because she wanted to go faster. We had never been to Lake Chabot before and all the hills made for some solid training especially when Evangeline wants you to go faster. Good golly child, I’m not a machine. Thankfully, I think all the extra weight and resistance has helped tighten up all the loose skin I have around my torso. I still jiggle like J-E-L-L-O when I run, but being able to stretch out that loose piece of skin like pizza dough during show and tell about my scar is comedic gold. I’ll take it.

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My health and my nutrition is going well. I’ve actually managed to put on a couple pounds, but I think it’s time to improve the quality of my calories. The steady diet of candy, chips, gelato and popcorn is not going to cut it. I’ve also decided that I’m giving up on bread (read bread, not gluten). I swear that bread is getting worse to get down and is causing me more issues than it is worth. While I will mourn the loss of scones, croissants, and sandwiches (the ultimate man food), I think my bowels will thank me.

I'll miss you buttery, flaky, rolls of delight...Thanks for following my journey and if you want to contribute to our family in support of No Stomach For Cancer, you can still do so by clicking here: I LOVE THE DANG’S AND I LOVE NO STOMACH FOR CANCER.

Cheers,

Steve

 

 

 

6 months, New Friends and a Triathlon in 2 Weeks

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Meeting Michele, my new CDH1 friend!

A couple of weeks ago I got a message from Rachel who had been in contact with another CDH1 patient going in for her total gastrectomy at Stanford. While it sucks to have such a rare condition, it makes the HDGC community very unique and tight knit. This past Monday I got a chance to meet Michele and her husband Jeff as they were preparing to make their way home after recovering in the hospital for the past week. Jeff and Michele were so sweet and had really good spirits considering the fact she parted ways with a vital organ seven days ago. So we did what I think most post-gastrectomy patients normally do, talk about food. The weird cravings you get when you no longer have a stomach is hilarious to me, however, I did assure her that she will be able to eat a small cupcake and donut holes soon enough. It was crazy for me to think that almost 6 months ago I was recovering in the room right next to hers.

As for the recovery almost 6 months out, I wish it were all lollipops and rainbows! While I have made huge strides in what I am able to eat and how much I can eat, I still have bad weeks. This week the stomach cramps returned and dry chicken is still not my friend. I am thankful however, that most of the things my doctor said I would not be able to eat again, I’ve been able to eat in small quantities. The doctors told me I could not eat steak again, but if it’s rare I can have a few bites no problem! I was told I could not eat cupcakes again, but if I have only a couple bites, it is all good! There are a few things that I do really miss about my old diet that still cause me problems: sheer quantity, salad, broccoli, spinach, rice, anything cold in the morning, and dry bread… while everyone is different, I think that this will be par for the course moving forward and I am OK with that. Every day on my Facebook feed from the Stomach Cancer Warriors and Caregiver page is a story about someone who is going through chemo for stage 3/4 cancer or a family member posting for someone who has lost their fight with cancer and I cannot help but to feel a little bit guilty that we discovered my cancer early enough for me to not have to endure chemo/radiation. To me, those patients are the real brave ones. The money given to research, all the grants, the countless doctors and researchers gave me something my dad and sister never had; a fighting chance. So for me, if I can give back in some small way, by visiting or encouraging other CDH1 patients in the hospital or running a triathlon to benefit No Stomach For Cancer, it’s my way of honoring the brave ones who still fighting their way through the cancer journey.

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I can still eat the food of my peoples… only in small quantities!

As for our triathlon training: I have been behind for the past couple weeks because I have not been feeling well, but still managed to crank out a bike ride while on retreat with my staff in Lake Tahoe and 4 mile run yesterday. I’m not in as good of shape as I would like to be two weeks from race day, but I think I have enough to finish my race. One of the things that I’m learning about training is having to use a lot of “gels” on a consistent basis (every 30 minutes). After a 1000ft/4 mile climb in Lake Tahoe I was gassed, feeling light headed and had to pull over to squeeze a gel packet. It’s pretty impressive actually how fast it works on my body and I was able to finish the rest of the climb. Kate has been totally kicking butt on her training and even came in second in her work’s, “Biggest Loser” competition. We’re still trying to work out her winnings, but we think she should at least get her $50 buy in back. Kate has been an amazing support to me these past 6 months and I’m really looking forward to seeing her compete in her first triathlon!

As for my goal of raising $500 for No Stomach For Cancer, Kate and I are still $425 short of our goal. If you would like to contribute, click on our link here: http://www.gofundme.com/trinostomach

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Kate and I stopping for a quick photo on our ride around Lake Tahoe

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My constant training buddy

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An early morning ride along the shore

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Quick refuel break with my friend Brian on our ride

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The road of death.

 

Training Day and How You Can Help Me Support Gastric Cancer Research

It’s official, Kate and I have restarted triathlon training and yesterday I ran the furthest distance since parting ways with my stomach. In about 40 days we will be competing in my first “stomachless” triathlon at Pacific Grove (Kate’s first triathlon ever) which will make it exactly 6 months, 1 week and 1 day (6 months, 8 days) since my total gastrectomy.

IMG_2477So what is life like almost 22 weeks later? It’s good. I still wake up in the middle of the night at least once a week with that feeling that lava is working it’s way up through my esophagus. I still have abdominal cramps when I eat things like quinoa and every once in a while bread, but when half a sandwich does go down, it tastes like heaven. My portion sizes are doing amazing. I’m eating almost everything that that doctors told me I would not be able to eat again: steak, donuts, and a reasonable amount of ice cream, cupcakes and cookies. With all the training, I’m trying to eat as much as I can to stay above 155 lbs (I’m at 157 lbs). I am also trying to focus on my endurance and rebuilding the muscle I lost with light resistance starting with pushups.

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We call this family push up time every morning, I’m now up to 60 pushups in one set, woo!!!

Training for this triathlon is more than just me getting in shape. I set a minimal fundraising goal to benefit the community that has been so instrumental in helping me through these past few months, nostomachforcancer.org. The way I think about it:

20 years ago my sister passed away of what we now know is hereditary diffuse gastric cancer.

15 years ago they discover the CDH1 genetic mutation that causes HDGC.

10 years ago they started performing prophylactic gastrectomies to combat HDGC.

and today, that surgery saved my life. There is still a long way to go in terms of research, but if I can help advance the research so 12 years from now when my daughter gets tested for CDH1 that there might be more advanced screenings for HDGC, I’ll do what I can 1 painful mile and $1 dollar at a time.

I’m inviting you to join our adventure and help us raise awareness for No Stomach for Cancer and gastric cancer research by clicking on our link below:

http://www.gofundme.com/ckxwxo

If you want to contribute $5, $10, a little goes a long way.

ALSO, I’m working with a friend to help me produce “Team No Stomach for Cancer” jerseys. We’re working on a mock-up and as soon as they are ready, I’ll post them and take pre-orders.

My Eyes are too Big for my Stomach, Literally

A little over 4 months after surgery and I finally feel like I’m getting back to normal. This past weekend I was feeling well enough to make our annual trip to beautiful Laguna Seca for the World Superbike races. Rather than spending two days at the track, my friends Brian, Steve and I decided to ride south on highway 1 to see where the road was going to take us. This trip was all about celebrating life and touring the California Coast the way it was meant to be seen… riding a motorcycle and tasting the local cuisine, even without a stomach! From San Jose we headed south to Pacific Grove for lunch at Hula’s Island Grill before continuing past Carmel to see the picturesque Bixby Bridge overlooking the Pacific Ocean. With World Superbike in town, it was great to see we were not the only motorcycle enthusiasts from all over the U.S. pulling over to take pictures at this famous bridge.

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Brian (left), myself and Steve (right)

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Motorcycle enthusiasts of all sorts were present at Bixby Bridge. Our trusty rides: Harley Davidson Street Bob (Steven G), Harley Davidson Street Rod Muscle (Brian) and a Ducati Monster 796 (my baby)

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An incredible bridge you need to see!

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The new jacket Kate got me worked like a charm… only it was a little frosty for the perforation. 60 degrees at 70 mph, feels pretty cold.

This was by far my longest ride post-gastrectomy and after a couple hours of riding from San Jose to Big Sur, I found out riding a motorcycle is quite an abdominal workout. We ended up in a small little rest stop consisting of an inn, a really expensive gas station (5.50/gal), and a really cool little pub that served some amazing smelling fish and chips. Judging from the fact that literally every patron present had an order of fish and chips, it’s safe to say it must be their hallmark dish. We had just eaten lunch otherwise we would have ordered some, instead we hung out and dreamed of our next trip south.

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The best dish, in my opinion, the lamb ragu.

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The amazing cannoli.

We rode back to Pacific Grove in time to catch our reservation for dinner at my Farewell Stomach Tour’s Best Italian winner, Il Vecchio. As always the food was amazing and to cap it all off, the owner kept bringing us free food! I ate the most I have ever eaten. I started with an order of mussels and split our favorite, lamb ragu. Half way through the meal, the owner put together a cheese platter complete with various breads and dried meats. Steven got a filet mignon that rivaled top steak houses, I am definitely going to order it the next time. We finished off dinner with a perfect cup of coffee and an amazing cannoli. As if it wasn’t enough, the owner returned with a lemon tart. Apparently my sensitivity to sugar has decreased quite a bit! I left the restaurant feeling overly full, which became a theme for the rest of the weekend.

I ate and ate, and ate, and ate until I had stomach cramps, but as you can see from the pictures, it was worth it! Our meal at Dametra Cafe in Carmel put me over the edge. My eyes are literally bigger than my stomach. The meal started with an order of smoked salmon with feta, capers, olive oil and crostinis. Kate and I split a braised lamb shank so tender it literally fell apart when we touched it with a fork. A potato au gratin along with broccoli was paired as a side dish. To add to the personal environment, in the middle of dinner the owner and one of the cooks came out to serenade the entire restaurant. After a round of applause we ordered cappucino’s, but it came with a complimentary order of the baklava from the owner! This has been our weekend of free food! I had some cramps after this last meal, so we decided to walk it off heading down to Carmel State Beach just in time to catch one of the most gorgeous sunsets I have ever seen. The cramps eventually subsided for in time for our walk home.

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the perfect sunset at Carmel State Beach

Before our ride home we had breakfast at First Awakenings in Pacific Grove, where the pancake I had was ginormous. In picture below you can see how big the pancake was, and how much I actually ate of it…

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The size of the pancake.

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How much I actually ate… the wedge. Kate helped me out with the other piece.

This weekend I made a conscious effort to savor every bite and every mile. The added bonus? I even put on a pound!

Until our next adventure, salut!

-Steve

 

 

Surprised!

Last weekend Kate organized a surprise party for me. I went to pick up our high school team coming home from Guatemala. I rushed home thinking I was going to be late to meet my friends coming in from Sacramento and when I walked through the door I was met with the tiny faces of my friends’ kids throwing confetti at me and yelling “SURPRISE!” I was genuinely scared and confused. They got me good (the video is posted below, courtesy of my friend Brian Landi). After my heart rate slowed, I was met with an amazing taco bar and hanging out in the backyard with our friends. I felt incredibly blessed to have such great friends and to be alive! The cherry on top was Kate’s present to me. She wanted to get me something special since I lost so much weight and could no longer fit into my old motorcycle jacket, she got me a brand new one. I could not have thought of a better way to begin my 4th decade of life then celebrating with the people I love. To think think of our journey this past year and the bullet we dodged has been a little overwhelming and I was left speechless, but thankful.

As for my recovery update: this week is the first week in a long time where I feel like I am getting back to normal. My portion sizes are increasing and I worry less about whether or not something is going to give me dumping syndrome. I credit part of the nutritional success to the fact that I am getting into a rhythm of eating. Almost instinctively, I know what I can eat, what to avoid and how much to eat. I am also getting that feeling of “hunger” coming back, although it is a little different from before. I feel like I have two modes: full and not full. When I’m not full, I feel the need to fill it, so I will snack on something. I feel like I am constantly grazing which has really helped my weight. At my low points I will come in around 158 pounds and my highs will be around 162.

For the past couple weeks I have been seeing a nutritionist who is helping me create a guide to eating. While it has been really helpful, our final interaction made me laugh. When I told her that I drink Gatorade I might as well have told her that I liked to kick puppies. “DO YOU EVEN KNOW WHAT THEY PUT IN THAT STUFF?!?! IT’S BLUE!!!!” Given her reaction to my beverage of choice, I decided in that moment I was not going to tell her about the other stuff I eat… i.e. M&M’s, licorice pastels, gelato, coffee, and kettle corn. When I said that I was going to start trying to find a gluten that works for me, she said, “you don’t want to eat that junk.” Lady, I’m not totally sure what gluten is, but I know it comes in the delicious form of pizza, scones, pasta, and at this point, if it can stay down, I am going to eat it! I am all for nutrition, but man alive, I might have to pull out a home equity line of credit to pay for the ingredients they suggested. Some of the ingredients literally sound like I’m creating some kind of crazy witch doctor elixir. At first it starts normal and then it gets ridiculous:

1 Organic Banana

1/2 cup of Organic strawberries

1 cup of lactose free kefir yogurt

1 scoop organic, non-heated, GMO-free, grass fed whey protein

1 tsp organic, local, royal pollen jelly fed only to the queen bee

1 drop of saliva from a poisonous amazonian dart frog.

1 gram of moon dust.

A single tear from a yeti caught just before the snow starts to melt. Organic of course.

Blend, enjoy, and repeat as necessary.

All of these ingredients should be found at Whole Foods by the way, except for the silly ones, like the pollen only fed to the queen bee. Actually, that’s a lie. They carry royal jelly in their honey section. Then there was the homeopathic solution to my chronic nausea, cannabis. Yes my friends, she recommended that I become a card carrying member of the “green cross.” Do not worry, I know you are all wondering and yes… it has to be organic too.

Besides my $50 morning protein shake and the cannabis, it was actually a pretty helpful to meet with a nutritionist at least to get some good ideas about what my body needs. It was a lot more helpful then the “you should eat more eggs” solution given to me by my surgeon to help me with protein. Or the, “here is a diet plan for a gastric bypass patient because we don’t have one for you, but it’s close”, given to me by a dietician at Stanford. My nutritionist had some great suggestions like trying 1 tbs of raw apple cider in warm water to drink like a tea before meals to start the digestive enzymes going. I actually think that the probiotics in my kefir yogurt she recommended to me has really been helping my digestive track. Since I started my shake everyday, I have not been having intense stomach cramps at night. Here is what I actually put in my shake every morning:

1 cup lactose free kefir yogurt

1 banana

1/2 cup of strawberries

1/4 cup of blueberries

1 tsp of honey

1 scoop of protein powder (I change it up everyday just to keep it interesting)

1/2 packet of powdered greens (because I don’t eat much, if any roughage)

As for exercise: I’m learning how out of shape I have gotten in the past 4 months. While I have been cycling, I have not been keeping up with my running. I went out for a run yesterday and after a mile I started feeling side cramps in need of an oxygen tank. This week I also started my first abdominal work out using a pilates video off YouTube. Atrophy does not even begin to describe the status of my abdominal muscles. I may have completed 10 minutes of positions and felt like my torso was on fire the next morning. The road to recovery is slow, but I feel like I’m making good progress and enjoying the ride.

Happy birthday America, be safe, and try not to hold any fire crackers in your hands (funny story about this next week).

-Steve

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