A few weeks ago I participated in a benefit walk for for Multiple Sclerosis. I consider myself blessed to have a boss I can also call a good friend. Throughout my journey from diagnosis to surgery #1, recovery #1, surgery #2 and recovery #2, Dale Gustafson’s friendship has been special. For anyone living with an illness, especially in our tiny CDH1/HDGC/Total Gastrectomy community, I think it is only human to look for people who can truly empathize with our journey. Perhaps that desire to connect with others going through similar experiences started with a search on Google, leading you to nostomachforcancer.org, connecting you to Marne’s blog where you discovered the two Rachels’ blogs, and soon emerged a small village of people simply telling their which sounds oddly familiar to your own story. I believe there is hidden value in hearing others stories as they navigate trials because it helps us create a language to process pain.
A few years ago Dale was diagnosed with MS. He knows exactly what it is like to have your world turned upside down and adjust to a new way of life while pastoring others through life’s challenges. Dale’s story has unlocked a new language for processing everything Kate and I have gone through in the past year and a half. While we have learned a lot, it has been invaluable to walk with someone who keeps it light. You might assume that all our conversations are deeply spiritual, but our most meaningful conversations have been devising a plan to tryout for the Amazing Race as the worst team ever: two pastors, one with MS and the other with no stomach which would relegate Dale to the food challenges and myself to the physical challenges, but at least we can both drive stick which gives us a slight competitive edge. We are only half joking.
Dale gets invited to speak in different contexts for the MS community and on the day of the Silicon Valley MS walk, I heard Dale say something to the crowd that was absolute gold, “Living with MS, I’ve learned I need to take ‘sick days’ on days I feel good.”
“living with MS, I’ve learned I need to take ‘sick days’ on days I feel good.”
A few weeks ago my motorcycle club was invited to be apart of a pilot episode for Jay Leno’s new show, “Jay Leno’s Garage.” This episode featured the San Francisco Motorcycle Club which apparently is one of the oldest in the country turning 111 years old this year. The producers wanted to shoot Jay riding around San Francisco with other motorcycle enthusiasts following an interview with the club president. How often does one have the opportunity to ride motorcycles with Jay Leno through San Francisco? So taking the advice of my boss and pastor, I was feeling good and put in for a sick day. So on a random Tuesday, my friend Brian and I rode to San Francisco to join some friends for breakfast at Red’s Java House right underneath the Bay Bridge before heading over to the club where hundreds of bikers and motorcycle enthusiasts gathered to ride with Jay Leno. When we got to the club I had to use the restroom and walked in the middle of their shoot. Seizing the opportunity, I asked Jay if he would take a picture with me and he actually said, “yes”. I could not believe it! Jay was wearing his classic denim on denim and I will just say, there is a reason why he rides with an open face helmet. It was a “sick day” well spent.
Truth be told, in the past few months, I could probably count on one hand the number of days that have passed where I have had a full day where I haven’t felt a spout of nausea, spit something up, or felt somehow sick. Some kind of episode happens at least once a day. Throughout this process, I have learned that when you feel good, live life, when you don’t, kick back, it will be O.K. It is part of living life without a stomach and my family and I are making the necessary adjustments. Even my two year old daughter is learning to adjust. When she see’s me lean over the sink to cough up what got stuck, she just hugs my leg, lets me be and life goes on like usual. Some days are worse than others, but aside from the hour or two a day of not feeling well, I am settling into my stomachless life. I’ve been on a new diet for the past couple months which has made a huge difference in my bile reflux and now I rarely have to take carafate in the middle of the night. My labs from the doctor this week look great with iron, D, b12, and absorption levels right where they need to be and I’m actually heavier now than when I went into surgery the second time level at 165/167. I’ve eliminated red meats and have switched to a low fat, low carbohydrate diet relying mostly on lean proteins, nuts and coffee. Side note: coffee is just my passion and has little to do with my diet. It’s funny, but my baristas are also apparently learning to make the adjustment to my stomachless life. This week I went into a local coffee chain that literally makes coffee one pretentious cup at a time… and I love it. The baristas at Philz Coffee typically ask you how you like your coffee so I asked for a large low-fat coffee (they usually use heavy cream) with 2 Splenda’s. My order led to an interesting conversation:
Barista at Philz, “do people judge you for drinking Splenda?”
Me: “not when I tell them I had my entire stomach surgically removed because of cancer.”
Me: “hahaha! I get that look every time.”
Me: “seriously, don’t feel bad.”
I don’t think he appreciated the joke as much as my stomachless friends.
Despite some of the annoying parts about being stomachless I’m trying to get back to everything I enjoy. This Sunday I’m taking the next big step as I attempt my first international trip. I will be taking a team of 18 people to Guatemala which is one of my favorite countries in the world. Our team will be constructing a church and running a children’s program in San Benito Petén, the location of Survivor season 11. If you are interested in following our journey you can do so here: calvarylgparents.com.