A couple days ago Kate and I were going for a walk which has become a beautiful regimen in the Dang household. I have to walk at least three times a day to keep my bowels moving. When we walk, we walk incredibly slowly taking in and talking about life. The other day we were talking about how incredibly blessed and fortunate we’ve been for the past 6-9 months. A lot of people, are not as fortunate. Last year I went to Guatemala and came home incredibly sick. When we went to our gastroenterologist, he was determined that we were going to get over the stomach bug, but he could not over look my family history. He kept pushing me to go to Stanford to get genetic testing. Once the referral to Stanford was out, Stanford kept calling me over and over again to come in and get tested. The way that I saw it, if I have to get an endoscopy every year and a colonoscopy every five years, what difference does it make if I have the gene or not? When I went in for my first genetic consultation, I realized how wrong I was about my treatment plan.
Unfortunately, this form of cancer forms within the five layers of the stomach laying undetected by modern screening technology until it’s really too late. When it starts to show up on tests, that is when I’m in mortal danger. With a huge number of genetic coding missing (16 to be exact), I was at a very high risk of developing an aggressive form of stomach cancer very quickly.
I grew up not knowing why my family dies of cancer. I grew up with my grandma, my aunt, my dad and my sister all passing away from stomach cancer. For both my dad and my sister, by the time they went in to see a doctor there was nothing that they could do. Even going back and looking at hand written notes from my sisters autopsy before the time of electronic data storage was like going back in time… and that was only 20 years go. It was only about 15 years ago that a scientist in New Zealand discovered CDH1. It was 10 years ago that surgeons started performing prophylactic gastrectomies on CDH1 patients. The first patient at Stanford called me and told me that the surgeon had to go before a board of his medical peers to defend why a total gastrectomy was the best course of action for CDH1. I’m the 23rd CDH1 patient at Stanford. 22 of us out of the last 23 came up positive for cancer in post-surgery pathology after completely clear PET/CT and endoscopies.
So here I am, 11 days out of surgery and I can’t help but to look at the timing in which this all came together and stand in awe of God’s trustworthiness. Did it suck getting sick in Guatemala? Yes. But if it wasn’t for that sickness and the persistent doctors, I might be dead here in the next 3-5 years of full-blown stomach cancer. I’m not sure I could accredit that timing to anyone else besides God. I grew up bitter and angry at God because I believed that He did this to my family. Today, walking through that suffering, loss and hurt, it’s made me the man that I am today and quite frankly, it’s given my faith resiliency. The reality is that faith can’t give you a free pass from suffering, but it does give you the promise and the hope that you won’t have to walk through the valley of death alone.
I think for this reason Psalm 22, “my God, My God, why have you forsaken me?” and Psalm 23, “the Lord is my Shepherd” stand next to each other. These Psalms and these prayers from the life of a man in the everyday struggles of life gives us permission to say, “I’m angry at you, and I trust you” all at the same time.
So back to our walk, as we talked through this next season in our lives, what I’ve realized is that we’ve changed the story of cancer in our family. Before me going in to get genetic testing we just waited until cancer came and found us, hoping, that some how it skipped us. Today, we can literally name what afflicts our family and we can do something about it. From now on, every one of our children and our children’s children will know exactly what is going on with our genetics and be proactive rather than surprised. Science has given us to tools to fight back. I am so incredibly thankful for the times in which we live. I’m so incredibly thankful for the brave scientists and doctors who took the risks and pioneered the way. I’m thankful for a second chance at life… which for me really means, doing the first half even better. I’m thankful for my amazing family who have gathered around me to to carry me and to force me to eat when I don’t feel like eating another bite. I’m thankful for my church who refuses to allow me to go about this alone. Most of all I’m thankful to my Creator/Savior, who from the time I was a zygote, knew that I was going to face hardships, and has been so faithful to carry my through the most difficult times in my life. He truly is trustworthy.
3 thoughts on “Changing the Story”
Well put Steve. I’m going to reblog this onto my page.
Reblogged this on Cytosine Deleted – Life with the CDH1 gene mutation and commented:
This was written today from one of my CDH1 blogger buddies, Steve.