This whole thing started around this time last year. Brian asked Joe and I to stop over because he had something he wanted to tell us. That something was that he knew the cause of his stomach cancer. He tested positive for a CDH1 gene mutation. He layed out all the information regarding what is known about developing cancer if you inherit this mutation. He also mentioned that the recommended treatment option is a total gastrectomy. I distinctly remember two thoughts. First, not to worry because I know I did not inherit this gene. Second, even if I did, there is no way I am having my stomach removed. Who would do such a thing? Very few people knew what was going on. I did not want to get into the “I might have…” conversation. So I tested and awaited the results. You know how that went. And in hindsight not a big surprise. Growing up I often heard how much I resemble my mom. Guess I got more of her genes. Anyway, I stayed quiet. I needed an endoscopy and colonoscopy to make sure my GI tract was healthy. Up to that point I did not discuss any of this.
When I decided to go ahead with the surgery, I still was not sure how to tell people. I spoke with my kids separately. Kiley was not happy that I was “keeping a secret”. I explained to her that up to that point there was not much to tell. I would not have been able to answer any of her questions if I had told her what was going on in the early stages. I remember telling family/cousins about this after Brian’s funeral. Almost all were there and by that time we knew the inherited pathway was from my mom’s family and they did not need to worry or be tested. Colleagues at work was a different story. I knew I would need to take a medical leave of absence so I needed to tell them and make plans for my responsibilities to be covered. My first attempt was to play it off. I told a co-worker that “I was tired of the extra weight and I decided to have my stomach removed”. The response was something like “Are you serious?”. “Well, not about the weight but yes about the stomach removal”. It got easier after that. Just get down to the facts. “I inherited the same gene mutation that my brother had. This puts me at risk for also developing stomach cancer. Since there are no good screening methods and no good treatment options, I am following the recommendations and having my stomach removed”.
I remember participating in a group panel in which we were sharing with students some difficulties in our lives that we had to overcome. Hopefully, helping students realize that the path to success may not always be smooth but they should endure. I was relating the long and sometimes obstacle filled path that I took before I landed my current faculty position. I honestly did not feel I was contributing much to the panel because my colleagues were relaying some serious life challenges. All the while, I was asking myself, “Is now the time to bring this up?” I did not, because at the time the event was being organized, I had not made a decision to the surgery and still had more questions than answers. I was not ready to share. Inspired by the stories of my colleagues, I did manage to share with them in private what was going on in my life. From there I made it clear to those I spoke with that it wasn’t a secret, they could share with anyone who asked but I was not going to make a broad public announcement.
The reason for this post is that this is one topic I have not seen discussed. When to tell. How to tell. I decided that the topic may be too sad (for lack of a better word) to post updates on Facebook or other ways. I created this blog for anyone interested in following along and being updated. I have had a few people ask me about my weight loss not knowing the background. My favorite was “You look good, but are you okay?” and “Were you trying to lose weight?” Still not the most comfortable in telling the story. “The weight loss was not intentional but it was expected. I had my stomach removed because I carry a gene mutation that put me at a high risk for developing stomach cancer.”
One last story… Kept to the end for those who are reading. I promised Kiley “no more secrets”. That she would know everything going on as soon as I did. I kept that promise. Unfortunately, I did not know what my recovery would be like after surgery and as best as I tried, I did not prepare her well. The lack of energy and the weight loss left her with the impression that I was not doing well. She related the weight loss to that my brother experienced. When I realized she was worrying in silence, we had a nice talk and I reminded her that I would keep my promise. I am not sure it helped much. What did help was time. She saw that I was getting stronger. I would fall behind the group walking during some of her college tours. She eventually would laugh when I would say that it is all good, “I am just walking in the cancer lane. It is a little slower.” And recently, we were out shopping and got stuck behind two people who walked even slower than I do. Guess the recovery continues if you can walk faster than people who are younger and probably healthier.
So keep the secrets as long as you need to. When it comes time to reveal, I have no answers. Highlighting the facts seemed easiest. Then answer questions as they come. I did what I thougth best. I tried to tell those closest to me in person before the story spread.
It all started about a year ago. The journey continues…