At the age of 29, Steven Dang came face to face with his family's worst legacy: a rare form of stomach cancer that had taken the lives of many of his loved ones. He shares his story of fear, faith, and finding God's grace.
A LITTLE OVER a year ago I was eating sushi with a friend and co-worker when I saw a familiar area code pop up on my phone: 6-5-0. It was one of many calls I’d received from Stanford since last October, but this phone call would forever change my life.
“Mr. Dang, do you have a minute?”
A couple months earlier, I had returned from a trip to Guatemala with intense abdominal pain, leaving me debilitated for a month. My gastroenterologist was less concerned about my travel bug and more concerned about my family’s health history. My grandma, aunt, father, and sister had all passed away from stomach cancer. My sister had been 22 years old, my father, 38 — at 29, I was splitting the difference.
My grandma, aunt, father, and sister had all passed away from stomach cancer. My sister had been 22 years old, my father, 38 — at 29, I was splitting the difference.
Stanford University’s genetics program tested me for a specific genetic mutation called CDH1, which leads to an 80 percent chance of developing a rare genetically-linked cancer, Hereditary Diffuse Gastric Cancer (HDGC). This genetic mutation is passed down from generation to generation with each child having a 50-50 chance of inheriting the gene mutation.
Our genetic counselor gave us some overwhelming numbers: 1-3 percent of gastric cancer cases are caused by HDGC and, at the time, only 350 cases have been confirmed worldwide since the discovery of the gene in 1998. At of January 2015, a search through Wikipedia yields exactly 38 words about HDGC. My sister, my younger brother, and I had won the lottery no one wanted to win.
My sister, my younger brother, and I had won the lottery no one wanted to win.
Unlike other cancers that become a mass of cells which develop into a tumor, HDGC grows submucosally and spreads within the five layers of the stomach. It is not symptomatic until later stages — making it undetectable by modern science. This was the first time I had heard the words “undetectable” and “cancer” in the same sentence. By the time this form of gastric cancer is detectable via screenings, the cancer has well metastasized and prognosis is poor.
Gut Check: No Stomach, No Stomach Cancer
At this time, the only treatment for the CDH1 mutation is a prophylactic gastrectomy, a preventative surgery that removes the stomach. In short, having no stomach means no stomach cancer. Only post-surgical pathology can reveal whether or not a patient had the cancer present. Pathology results for 21 of the last 22 CDH1 patients at Stanford undergoing prophylactic gastrectomies revealed foci of cancer present in their stomachs even without symptoms and after clear screenings.
It was a step of faith deciding whether or not I would go ahead with this life-changing procedure. While my church community was overwhelmingly supportive throughout the entire process, there were small pockets of well-meaning individuals who questioned my decision to go into surgery, wondering if perhaps a homeopathic solution was more appropriate. “Was I acting out of fear or faith”, they posed.
Was I acting out of fear or faith?
While I believe God can do all things, eating more organic broccoli was not going to fix a gross deletion in my genetic coding. My wife Kate and I have often said, “We spend our entire lives learning how to trust God”. Since our journey with CDH1/HDGC began, we decided that trusting God with the unknown was the only thing we could do.
Unfortunately, our trust in God did not guarantee that insurance would cover the procedure. When we received a $9,000 bill for a CT scan that they deemed an “experimental treatment”, we still had to trust. In our prayers, it wasn’t always easy to trust while wondering whether or not I actually had cancer, if it was metastasizing, if surgery would be too late, or what this procedure would mean for our future.
In our prayers, it wasn’t always easy to trust while wondering whether or not I actually had cancer
The day after Ash Wednesday, in March 2014, my wife and I prayed in surgical-prep and I signed documents to donate my stomach to cancer research. A few hours later, I awoke from surgery dazed and in excruciating pain. I looked down at the six-inch wound running from the top of my diaphragm to my navel, marking the removal of an organ that had been in my body since the fourth week of conception. Post-surgical pathology (after my total gastrectomy) revealed Stage I cancer growing throughout one of the layers of my stomach, despite having completely clear scans, tests, and endoscopies.
Our doctor, the head surgeon of gastrointestinal (GI) oncology, informed us about all the previous CDH1 cases; my pathology results were the worst he had seen. “If you had waited another year, you probably would be planning your funeral,” he told us. The cancer was fully contained within my stomach and had not spread to my lymph nodes, which meant I would not have to undergo chemotherapy or radiation treatments. Once the pathology results were received, our insurance began covering us, because “cancer” was covered in their system. We then began the process of recovery.
A Life Without a Stomach
I am often asked, “Can you live without a stomach?” Yes, but life without a stomach comes with many challenges. Malabsorption, rapid weight loss, chronic nausea, bile reflux, and intermittent abdominal pain are par for the course.
At my lowest, I had dropped from 207 to 147 pounds in about six months. Complications led to a second surgery six months later, accompanied by three bouts of bowel obstructions, three hospitalizations at two different hospitals, a hernia, an infected Meckel’s diverticulum which intermittently cut off blood flow to my bowels, and the development of kidney stones and gallstones, all within the span of a month.
At my lowest, I had dropped from 207 to 147 pounds in about six months.
Adjusting to life within a community where research is sparse at best often defaults to bariatrics, which has completely different nutritional and dietary goals. Venturing into the unknown realm of medicine and nutrition has become an accepted part of my “new normal”. The most helpful information has come from the body of knowledge organized by No Stomach for Cancer and constant dialogue with a tiny community of other CDH1/HDGC bloggers.
My diet has changed dramatically, not only in sheer quantity, but also in the quality of the food I can eat. Low sugar, low fiber, high fat, and high protein are the new menu. In the beginning, staying under four grams of sugar and two grams of fiber, eating very slowly, chewing often, separating drinking from eating, and eliminating all vegetables was pivotal to avoid “dumping syndrome”.
My body struggled to regulate the amount of sugar with any undigested food, triggering excessive amounts of insulin to be “dumped” into my bloodstream. Every meal was intentional and literally every calorie was counted, but food is not solely about calories — it is about everyday life.
Food is not solely about calories — it is about everyday life.
food, culture, and community
Over the past year of living without a stomach, I have developed a greater awareness of fare and its deep connection to culture, community, and theology. The transition in my diet initiated a fundamental change in my relationship with my own story, identity, and culture.
Vietnamese staples I had grown up on, including rice and pho, are difficult for me to digest. My mind had to be conscious of every bite, chewing until each morsel was reduced to pieces smaller than two millimeters, so my intestines could digest it. It made eating a chore. Being too excited to eat, trying to converse during a meal, or taking an accidental gulp of water could all induce a panicked sprint to the bathroom as bits of food returned with a vengeance, accompanied by the unpleasant feeling of choking.
My mind had to be conscious of every bite, chewing until each morsel was reduced to pieces smaller than two millimeters, so my intestines could digest it. It made eating a chore.
The absence of a stomach means the lack of the vital muscle needed to vomit, which makes the process of expelling food more like regurgitation. A fellow CDH1/HGDC blogger described this process as the “cat and hairball” reaction when our intestines return what was just consumed.
Food is never just food. The conscious change to my everyday eating habits made caution rife in each occasion, from the celebratory restaurant dinner to Monday Night Football. Cultural and religious celebrations from Easter to Independence Day, which revolve around the table, now involved planning.
When returning to church, I had anxiety as I prepared to take communion again for the first time. Would the sugar in the small thimble of juice be enough to cause the onset of dumping syndrome? Would the communion wafer be so dry that it would get stuck in my esophagus?
Would the sugar in the small thimble of juice be enough to cause the onset of dumping syndrome? Would the communion wafer be so dry that it would get stuck in my esophagus?
Perhaps the greater question in this moment was, ironically, “Would I act in faith or in fear?” My reflections on the past year of my life underline one of the few things I know to be true; we really do spend our entire lives learning how to trust God. Perhaps one of the most significant lessons I am learning in my journey is how to live in the space between trust and understanding.
Kate and I now read an often-quoted verse in a much different light. In Proverbs 3:5-6 (NIV), there is an acknowledgement that a gap can exist between our trust in God (“trust in the lord with all your heart”) and our understanding of God (“and lean not in your own understanding”). There is an acceptance within this passage that life does not always fit into neat categories and yet, despite our circumstances or results, we are still asked to trust God.
There are certain times in life that do not make sense, where Biblical training, faith, wealth, or family history cannot insulate an individual from the deeply existential questions that arise in the midst of these moments. Faith, however, gives us the courage to take the next step through the unknown.
While our circumstances might not be ideal, we can accept what is before us (“in all your ways submit to him”), knowing that God is trustworthy, and gather the strength to face the challenges of today (“and he will make your paths straight”).
And we were reminded that, since the beginning of our journey, it has always been about trust. May you also come to know God’s grace and peace as you trust Him in the midst of the unknown.