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 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
Steve Dang 