It’s week 5 of my recovery and this week we found out that my little brother Austin also came up positive for the CDH1 gene mutation. In a couple weeks we start the process of meeting with doctors and surgeons at Stanford. I think going through this process first helps, but it is strange on this side of the fence. I especially feel for my mom who will be going through this again for the 4th time with her 3rd child. All of us had a 50/50 chance of have the gene mutation, but 3/4 of us came up positive. Some people I talked to had 7 or 8 people come up positive in their family and in some cases even more! Statistics are brutal sometimes. Our genetics are what they are, but in many ways I feel fortunate that science can pinpoint and treat HDGC with high success rates if treated early. Knowing that my brother will be in good hands at Stanford with the same team that worked on me puts me at ease, but that’s easier said than done.
Life without a stomach is getting better everyday. My recovery seems like it’s kicked into high gear and I felt good enough this week to work half days. I’m pretty tired by 1 PM, but being back in the office with my friends/co-workers made me feel like I took another step back into a normal rhythm of life. Over the next couple of weeks I’ll be increasing my hours slowly until I’m back to full-time, but priority right now is my nutrition. I have snacks everywhere, and protein drinks in every refrigerator. I feel bad that 25% of the refrigerator at work is now filled with Myoplex, but is this where I can pull the “cancer” card? Perhaps too soon. My snack of choice right now is Justin’s Peanut Butter/Almond Butter packets. They are convenient, easy to pack and taste great. As the pack says, you just “knead it and eat it”. It’s a convenient way of getting 190 calories and about 7 grams of protein. Another tip for adding calories: drink more Starbucks. I’ve switched from my normal cup of drip coffee to a latte or a macchiato. Even a small (from Peet’s) or a tall (from Starbucks) latte has about 200 calories with whole milk and sugar free vanilla. I promised Kate I would not let my weight drop below 170 and I’m cutting it close at 171/172, but overall I think I’m closing the gap. I also made a deal with Kate that training for our triathlon would not start until I’m eating at least 1500 calories for 3 days in a row. Even though I feel ready to run, bike, swim, I’m trying not to push it. A fall on the bike right now would make quite a mess on the road, but our surgeon told us at 8 weeks I’ll be 90% healed and ready to ride!
Re-engaging the world also means the process of explaining to everyone what I can eat, what I can’t eat, etc… It does not make the best table conversation, but people are genuinely curious about what it’s like. I should write another FAQ, but here is a mini-version: No, I don’t eat from a tube. Yes, I can eat “normal” people food. Sometimes my excretions are weird. Yes, stomach cramps still hurt like a beast. Right now, I stay under 2 grams of fiber and under 4 grams of sugar. Yes, that noise you just heard was from my stomach. Oops, I farted #sorrynotsorry. Yes, I still refer to my “stomach” as my stomach, because I don’t know what else to call it and “food baggie” doesn’t quite roll off the tongue as nice. On the “do not eat” list: tortillas (flour and corn), tomatoes, broccoli, sweets, fruits that aren’t bananas, solid food before 9 AM, rice, and beef in all of its wonderful forms. Every week I try and revisit something from the “Not now, but try later” list, but these seem to be consistently bad news for me. I was, however, able to revisit one of my favorite taquerias known for its strangely addicting, non-vegan orange sauce which I am now convinced also has healing properties. I was able to eat most of a shredded chicken taco while avoiding the tortillas and the beans, sweet glory!
8 thoughts on “Stats can be Brutal, Orange Sauce Heals”
Still love you, Steven! Still praying! When?
Glad to hear you’re getting back to work! Sad to hear about your youngest brother, but glad to hear it was discovered sooner vs. Later.
Really pulling for the rice to make it off the “do not eat” list so you can enjoy sushi again as soon as possible! Congrats on the success thus far, and thanks for posting! Your tips are very helpful for me and my family!
I’m glad I could be of help! On the sushi front, I can’t eat sashimi, although chewing that much raw fish can get a little gnarly after a while, but the good news is I can still eat my hamachi! I’ll be thinking about and praying for you and your fam as you get closer to your surgery date!
You’re a wonder, Steve! Thanks for taking on all of this with such a great attitude! It is such an encouragement to me personally as well. Thank you for sharing your journey with us.
Thanks Sara! Hope you are doing well!
Great blog!!! Thank you. You are helping so many people by posting your experience. Although I tested negative for CDH1, I remain interested in experiences of people who have surgery.
Thanks for the encouragement Carole!