Over the past week I’ve begun to mentally and physically prepare for surgery and for life without a stomach. One of the most encouraging things I’m finding are all the people who keep sending me stories, articles and blog posts by others who have undergone this surgery for HGDC. One of the most encouraging articles I read was courtesy of one of our former students, Luke Aronie. Luke, as an avid biker, came across an article on ESPN about BMX biker and X-Games athlete Brian Kaminski who also had the CDH1 gene mutation undergoing a gastrectomy in July 2013. A few months after surgery he is starting to get back on the bike and train for competition. You can read this fantastic ESPN article here.
This week I also received a call from a woman who happened to have been the first person to have the prophylactic gastrectomy at Stanford by my same surgeon. Talking to her was a huge help as she is now almost 9 years post-surgery. She was able to tell me what life will be like a few years after surgery, what to prepare for and how to prepare for surgery. She assured me that life will be different, but it will be just fine. In her own family, 7 out of 10 her blood relatives have undergone the prophylactic gastrectomy for CDH1 and so far, everyone is doing really well. All of them reacted and handled the surgery differently so there will be a certain number of unknowns that I will have to walk through myself.
Next Monday I will be going back to Stanford for a PET scan and depending on the results, we will schedule my surgery date which we are hoping will be sometime in March.
In the mean time, I’ve continued my triathlon training even though I won’t be competing in 2014. I figure the better shape I’m in, the easier it will be on my body to heal. I’m also trying to put on a little weight because in my conversations with other patients, extreme weight loss is going to come with the procedure. The woman I talked to said that she lost about 85lbs in total after putting on 30 lbs before surgery. I’m hoping to put on about 10lbs of muscle heading into surgery. However, with the way that I’ve been eating, I’m not sure if that 10lbs is going to be muscle or fat! It’s been a common consensus that sugary foods are going to be hard on my intestines so for the past couple of weeks, especially during Christmas, there hasn’t been a desert or candy I haven’t turned down!
Kate and I have been just blown away by the generosity of people in our lives who have contributed to our “Farewell Stomach Tour” and have offered to babysit and take us to their favorite restaurants! We have felt so blessed by our community who have surrounded us with prayer. We’ve been touched by all those who have sent us encouraging e-mails, notes and Facebook messages. It’s been an incredible ride, we are so incredibly thankful to everyone for their support.
All that being said, now on to the real reason why you came: an update on the Farewell Stomach Tour.
This last Friday, a couple of our friends invited us to do a family day at the Oakland Zoo and lunch in Alameda. Our friends took us to a swanky thai restaurant called, “Spice I Am“. If you know me, you know my love for green curry which happens to be the dish by which I judge all Thai restaurants, and Spice I Am was decent. I’m a fan of thicker curries, and Spice I Am’s curry was more brothy, but still tasty. We decided to eat family style so that we can try a few different dishes, but the two winning dishes were: a delicious lettuce wrap made from from crispy coconut flakes and ginger and a crispy fish in a sweet, spicy sauce. Before leaving Alameda, we could not go home without a quick stop at Tucker’s Ice Cream where I got, you guessed it, the macapuno. No shame for the delicious things in life.On the final stop for the week, we went to one of my top 10 favorite burger places, Mainstreet Burger in Los Gatos, where I like to get the California as a lettuce wrap. Medium burger, pepper jack cheese, spouts, tomatoes, avocado with a pesto mayo all between crispy lettuce leaves, YUM! I also recommend you get the sweet potatoes and dip them in the Sriracha spead, try it next time, it sounds weird, but it’s awesome!