Let me start this blog post with a couple reassurances to put your hearts at ease: 1. I’m not dying. 2. I’m not leaving my position. I do, however, have some things that have been going on in my life that I wanted to catch people up on. While it seems a little impersonal, I felt a blog might be the best way I can communicate to everyone what is going on with me without having to explain it a million times. With that being said, if you didn’t hear it from me personally, I apologize and thank you for your understanding.
Those of you who know my story know that gastric cancer runs in my family. It took the life of my grandmother, my aunt, my dad, and my sister. This past summer I came back from Guatemala with a little parasite in my intestines. My gastroenterologist was not really sure what I brought home from Guatemala, but seemed incredibly interested in my family history. He referred me to genetics counseling at Stanford University where they can test my blood to see if there is a dominant cancer gene (Hereditary Diffuse Gastric Cancer, HDGC) that runs through my family that could have been passed on to me.
After thinking about my daughter and with some persistent phone calls from Stanford Hospital, I decided to go in and find out some more details. Through the process I had a genetics counselor who spent a lot of time digging through 20 year old medical records from my dad and my sister who both passed away at Stanford. Her form of cancer was rare, aggressive and does not show up on screenings until it’s advanced (linitis plastica).
Fortunately, 40% of these types of hereditary cancers are caused by a handful of known genetic mutations (the other 60% are still unknown). This genetic mutation is known as the CDH1 gene mutation. If you would like to know more about this gene read this article. I’ll keep the science to a minimum, but in short, all of us have two gene sequences: one from dad, one from mom. My mom’s side of the gene was perfectly intact, but on my dad’s side I had a huge portion of the stomach gene “deleted” or missing. That means that my DNA has been relying solely on my mom’s genetic coding for my stomach cells. One deletion or flaw in the DNA coding is enough to start producing a cancer cell, I am missing 16. At some point, my body will switch to the imperfect code and like a photocopy with a smudge; the flaw will get transmitted over and over again. This puts me at a very high risk of developing cancer. The doctors were pretty excited because they haven’t seen such a huge part of the genetic sequencing deleted before, so it’s pretty rare, but I’m literally being seen by the doctor who wrote the book on genetics and cancer and now I’m part of the research, woo!
Since this form of cancer is impossible to screen at this point, the only real way to deal with it is through a preventative gastrectomy (surgically removing the stomach). In simple terms: without a stomach, there is no risk of producing stomach cancer. Why such extreme measures? This form of cancer is very aggressive and post-surgery pathology of other patients revealed cancer cells already starting to grow between one of the layers of the stomach previously undetected by endoscopies/screenings. The doctors assure me that the outcome over the past 10 years has been great with no development of other cancers in their patients.
Coming up positive for this gene also gives Evangeline a 50/50 risk of inheriting the CDH1 gene mutation, but research is always getting more advanced so hopefully in the next 10-15 years screening technology for gastric cancers will improve.
The good news in all of this is the fact that I now have a name to what’s been going through my family. Sitting there in the cancer center made Kate and I feel so spoiled to have such a strong network of friends who have been so supportive along the way. We have been simply thankful for the fact that from day 1 we’ve had a group of friends praying for us as we navigate this next stage in our life. There are few things that I am absolutely sure of in life, but this one I am absolutely sure of: God is faithful. God has brought me through a lot in my life, and I absolutely trust Him to carry me through all of this. Faith doesn’t necessarily delete fear, but it roots my trust in an all-loving, all-powerful God and that gives Kate and I a lot of peace.
Thank you for the love, the support and your prayers,
Steve, Kate and Evangeline Dang
p.s. I know that this information might take a little time to absorb, I know that there will be a lot of questions, so I’ve attached an FAQ at the bottom of this post to help me field some of these questions. Please read through these FAQ’s first and if you have any more questions, feel free to post the question on this blog and I will add it and respond.
1. Are you dying? NO, I’m not dying. (yet, everyone dies lets be real…unless you are a vampire or zombie, but zombies and vampires are technically the undead, I digress)
2. Can you live without a stomach? Yes. It will definitely be a change in life style, but one that I will adapt to over the years. What they will do is attach my intestine to my esophagus. Obviously I will not be able to eat much at first, but I’m told by other patients 10 years out of surgery that you get used to a “new normal”. I will have to get vitamin shots once a month to supplement my nutrition.
3. Does this mean that you have cancer now? Not necessarily. As discussed earlier, this kind of cancer is hard to detect until it’s advanced. In the post-operation pathology at Stanford, 21 out of 22 patients already had cancer cells developing within one of the layers of the stomach without the patients knowledge and had completely clear screenings pre-surgery. If they find in my pre-surgery screenings (endoscopy and PET Scan) any anomalies will obviously push my surgery time table up. Most likely I won’t know if I had cancer cells already developing until I get the pathology results after surgery.
4. When is this surgery happening? TBD based on a variety of factors. Most likely, it will happen within the next 3-6 months. My genetic situation puts me at high-risk and it is not recommended I wait too long.
5. Is this a risky procedure? Low-risk. The surgeon who is working on me has performed this surgery for this reason many times. The surgery should last about 2-3 hours. My surgery will not be laparoscopic, but open.
6. What will you do in the mean time? Preparation. Kate and I over the next few months will be setting up our life leading into and out of the operation. We will be getting our amazing high school staff ready to assume the responsibilities of the ministry as I get closer to surgery. I will continue working as the pastor of student ministries at Calvary up until the week of my surgery. Kate and I are planning to do a little trip together and also start what we are calling “the Tour of Eating” where we’re going to try the “best of…” list of foods in the Bay Area once a month. We’re definitely taking suggestions!
7. How can I help? Pray. At this point this is the best thing you can do for us. When we know more of what the next few months will look like, this might change, but for right now, prayer is the best way to help.
8. Where can I learn more? No Stomach for Cancer. This website has been the best resource for me to find out more information from a community that knows what it’s like to go through this.
9. Are you leaving Calvary? Let me respond to this question with another question: are you crazy? We love our church community and without you there would be no way that we would be able to work through this. One of the most encouraging things about going through this is coming to a place where I realized regardless of the results, there is nothing that I would do differently about my life. I love, love, love working with students pointing them towards Jesus and encouraging them to become missional and incarnational leaders of the world. I always joke that to be a pastor is to be a professional friend, but it’s true. That being said, I am planning on working up until my surgery date and re-assuming my duties as the Pastor of Student Ministries at Calvary when I am recovered.
10. What’s going to happen in Student Ministries while I’m gone? Our amazing volunteer staff. In case you haven’t noticed, I believe each and every single volunteer on our Student Ministries Staff are on the front lines of the Kingdom. They are well-trained, well-equipped, talented, committed, loyal, faithful, and have the most amazing hearts of anybody I have ever met. They don’t join our staff as a favor to me or Jeff, but because they feel this deep calling in their lives to walk with a class to navigate them through the most formational 4 years of their lives. For each of our staff members being on staff is a privilege that they do not take lightly. My favorite part about our Student Ministries at our church is that it doesn’t revolve around one person because each and everyone of our 37 staff takes ownership of this ministry. I do not take the spiritual care of your students lightly, you can be certain, that our staff will take excellent care of your student. Logistically:
- Sunday Mornings: On the high school side we have a developed and trained team of teachers for Sunday mornings.
- On Wednesday nights the curriculum has been written for the next 6 months and summer curriculum is being worked on now.
- Oversight: We have an amazing team of full-time staffers who will oversee our ministries. Jeff Clark will be leading our Student Ministries alongside Julie Izor, our incredible administrator. Shamina will continue to lead our worship teams. Steven Giordano will still be leading our Guatemala Go Team as he has been doing (excellently, I might add) for the past 4 years. Together Jeff, Julie, and Shamina alongside our interns will assume the responsibility of high school ministries.
11. How long will you be out? I don’t know. Everyone is different with their recovery time, as I have more conversations with our doctors I will give you a better idea. I have seen people online who have gone back to work after a 8-10 weeks, but again, everyone is different.
More questions? Add it to the comments section at the bottom of this post and I will do my best to get back to you.