Yesterday, our gastroenterologist ran into Kate at the hospital while she was working. Kate told him about the past four weeks including the Meckel’s Diverticulum that had gotten infected and removed. The doctor said something that surprised both of us: the Meckel’s Diverticulum is made up of both stomach and pancreatic tissues, which means that I could have developed stomach cancer there as well! Was their a silver lining in getting split open again? I’d say so. This brings me to a topic that I’ve been thinking about the past few weeks.
It has been 7 months since my total gastrectomy and since then, I have had a little bit of time to reflect on the things that have made the biggest difference for me during recovery. I think having to go back in for a second and possibly a third surgery has made me think more about what I might do differently going back around. So for the next few weeks I’ve decided I’m just going to focus on re-do’s, lessons learned and looking forward. Perhaps my other friends can chime in, and please feel free to add your own input. After dinner with Kyle and Marne last week, I think for me, finding hope and positivity in the midst of the unknown is huge.
When I first learned about CDH1 and hereditary gastric cancer, my head was spinning trying to wrap my mind around this idea that modern technology cannot detect diffuse stomach cancer. Even further, to learn that my sister’s death was due to “leather bottle stomach” or linitis plastica and the fact that the gene mutation in my family line is so grossly flawed I thought I had a death sentence. My sister dead at 22/23, my dad dead at 38, and turning 30 this year meant the odds were not in my favor. When my surgical team sat me down to discuss the consequences of a prophylactic gastrectomy I thought my life was going to be over. The surgical team focused on what I would not be able to do anymore: no steaks, no triathlons, no energy, all paired up with life long malabsorption/nutrition issues, chronic nausea, and constant stomach pains = no fun. While life without a stomach comes with it’s challenges, my life is far from over. I’m not super human. I do not have extraordinary courage. I don’t have this inordinate sense of resolve. I’m not a saint. I still struggle with frustrations and set backs just like the next person. There have been days when I feel like I have spent most of my day around a toilet. There were days when chugging too much water makes me feel like I am choking, but I do not want this to be what defines me and I take hope in the fact that tomorrow is going to be a new day. Soon enough, you begin to string along two or three good days in a row and it gives you enough hope to get through the next set back.
Personally, I had to leave certain forums and groups because every day there were posts about the struggles of a total gastrectomy/stomach cancer. This is not to minimize what they are going through because let’s face it: the struggle is real, but for my morale, it can turn a bad day into a worse day. For me, it’s embarrasingly easy to get sucked into feeling sorry for myself when I have a bad day, so I had to do what is best for my mental wellbeing. Finding Marne‘s blog who was able to go back to running like Forrest Gump, and then Rachel‘s blog who is still enjoying the transcendent nature of food again, and then Canadian Rachel‘s blog about (said with a Canadian accent of course…) amazing ramen bowls, enjoying whatever it is that they do up north after TG, and then reading the story about Brian Kaminsky the BMX’er who was able to get back to competition, strung together enough stories to give me enough hope to keep moving forward through the bad days.
Kate and I have an inside joke that whenever we go and meet with our surgeon, he always makes some funny dietary/nutritional suggestion that is so vague, but genuine… Our personal favorite is something he suggests literally every time he sees me: “you should try eating more eggs.” Rock on Dr. N, we’ll make it happen.
So here is my first lesson learned: keep the sunny side up.