If I have learned anything through this whole process, it’s that the stomach-less community is tight. Yesterday Kate and I got to meet Marne and her husband Kyle for the first time. A couple of months ago, Marne reached out to us after finding out that her work was sending her to San Francisco for a quick trip so we coordinated to meet up for dinner. The past few weeks of set backs almost foiled our plans, but I was glad to be able to make it work. Marne’s blog, “Life without a Stomach” was the first we came across that gave us hope hereditary diffuse gastric cancer was not going to rule our lives and life without a stomach was possible. As my other stomach-less friends will attest to, life without the stomach can be very difficult with unique challenges to walk through, but having other people walk the same path is no doubt encouraging. Somehow chronic nausea, fatigue, malabsorption, and digestive issues get a little easier when someone says, “me too.” In other ways, it’s helped us to really figure out when there is a problem, for example, my stomach cramps. No one else was was feeling the gnarly cramps I had in the same exact spot over the past 6 months, which prompted Karen from No Stomach for Cancer to reach out and question if there was something else going on. This whole time I thought it was just dry breads, but who would have guessed it was my Meckel’s diverticulum getting infected, intermittently cutting off blood flow to my bowels and trying to kill me. All of the experiences, while they can be unique, have really helped Kate and I navigate the unknowns. The shared learning from the hundreds of doctors appointments the community has gone to has been incredibly beneficial. This morning on Rachel’s blog, “Foodie with No Stomach”, I learned from her nutritionist that taking calcium and iron reduces the absorption of both! What?! Who would have thought?! It’s like a group project that actually works!
It was really nice to be able to sit down to a meal with people who really know what we are going through. As we shared delicious truffle fries, tater tots and gourmet burgers, we also shared stories about losing loved ones; fathers, aunts, sisters, and so on. It was crazy to realize that for so long we thought our stories were unique, but now we know there are literally people all over the world who have gone through the same exact thing and it has a name: the CDH1 gene mutation. I was most excited for Kate to meet Kyle, Marne’s awesome husband. Often times I fall into the trap of thinking that I am the only one going through this since I am laying on the hospital bed, but our families and our spouses bear the burden with us. The truth is HDGC touches more than our bodies, it affects every area of our lives: financially, physically, socially, mentally and even spiritually. Often times laying in the hospital bed leaves our loved ones to deal with the fine print in life. So for all the caregivers and spouses out there, I give you the blogosphere fist bump for being strong when we are weak. It was also pretty fun to eat with someone else who eats as slow and as little as I do! Two to go boxes for half of this tiny, but delicious fufu burger with a parmesan crisp and fried egg? Yes please! And the best part? No judgement on the side.
As for my health: we met with my surgeon yesterday who was pleased that I had gained about 1.5 pounds in the past week and the medication for my bile reflux has been helpful. I don’t know exactly what was served in Holy Grail, but I’m pretty sure it was carafate, which is literally, a godsend for bile reflux. We’re still working on my weight, shrinking the gallstones with medication and trying to control the nausea especially with the zofran starting to lose it’s effectiveness, but recovery looks like it’s going to be on the up and up. In two months I will have to go back in for an ultrasound to check on the status of those gallstones, but hopefully I will not have to go in for a third surgery. As for my weight, every time I think about a TPN line going into my chest I force myself to eat another bite. On a side note: I was able to eat a piece of dry toast this morning without an issue, so maybe that second surgery is going to really expand my diet! Woo! In the next week I’m going to be really working on my energy levels so I can start going back to work, so I’m going to be increasing my early morning spinning time and intensity.