I’ve been writing on Twitter lately about how my health has evolved since the beginning
That little bubble in the middle is my tumor. On my stomach. You’ve now seen inside of me, you beasts.
of 2019. I’ll preface by saying that I am healthy at the time of writing, and am generally feeling pretty good, but in April I had a gastrectomy and a GIST tumor resected. I’m really lucky that my GIST was relatively small and had very clear margins. I had all the necessary pathology done, including defining my mutation. One of the more interesting things to come out of all of is that I learned that one of my grandmothers died of “stomach sarcoma” at 28 years old. These types of cancer are more rare in younger folks, so I have a followup appointment with a genetic counselor to determine if my particular GIST is heritable. I’m just starting to get to the point where I can begin to ponder that this happened.
Because I’m a scientist, I have been doing experiments to see what the actual volume of my stomach is post-resection. I’ve got about 3 ounces to work with. Mentally, I’ve been working through the fallout, but the immediate consequences have been much more physiological. I have kept active, but can’t really eat more than about 6-7 bites of anything. I’ve lost almost 60 lbs, which isn’t terrible because I had it to lose. The real challenge has been my inability to accept that I’m not a superhero or that my life would have to really change. Strange has been gentle and loving, reminding me to give it six months, but my lack of acceptance keeps manifesting itself when I travel.
Having such a limited intake means that I have to eat and hydrate throughout the day. I’ve got all these new rules for eating and drinking. When I get up at home, I have coffee with 30g of a protein supplement mixed in. Then I wait and have breakfast. Maybe an egg or half a yogurt. Then I have to wait at least 30 min before I can drink any more. Then I drink until lunch. I have something protein-laden for lunch and, wait another 30 min. Particularly if I go to the gym, I drink something with an added protein supplement. Dinner is the same, with more waiting until I can drink anything again. I shoot to hit 70-90 g of protein and 70-90 oz of fluid. With the breaks between eating and drinking, and the size of my stomach, I basically eat and drink all day to hit my goals. It’s very primal, and I still only hit 800 calories on a good day. I love keto, but too much keto is hard on my stomach. There’s lot of stuff that I can’t eat because it will upset my stomach, or it doesn’t taste right, or it gets stuck.
In traveling, I’ve learned a lot about myself and people and I just need to shake myself and tell myself to get it together. When we went to Nashville last month, I lost 6 pounds in the week we were there. Last weekend I went with friends to celebrate an impending wedding. Like a lot of people, they ate a single big meal a day and one smaller snack or meal. They’d drink fluids at meals. The first day, I knew this was a dangerous situation for me. By the second day, I was starting to feel the nauseated feeling I get when I am not eating or drinking enough. Today, four days after the beginning of the trip and my first real day back in town, I am a wreck. I feel exhausted, shaky, and nauseated. I lost another pound and a half on the trip. It’ll take me another couple of days to get back to “normal.”
I am trying to harken back to Strange’s advice – to give myself six months to adapt. Some foods won’t make me sick forever. But I think there are some changes to my life that are going to be forever, and I still haven’t figured out how to navigate that socially. My entire life right now revolves around the next meal. It’s hard for me to ask traveling companions to sign on for that and I have learned that my default setting is to not rock the boat. I’m not always a good advocate for my own health and I don’t want to be defined by this. I’m not currently comfortable in my own discomfort. I’m an intensely private person in, well, person and this is hard for me.
There’s another aspect I amstill wrapping my mind around, too. I can’t really drink alcohol anymore. It upsets my stomach and, because things move to my intestines so quickly, it takes a minimal amount of alcohol to end up falling down drunk. I was never a heavy drinker, but I am learning how many people had the perception that I was a drinker and how that has changed our relationships. I know that people are nervous that I won’t be “fun” without a cocktail. I don’t know how to navigate that landscape yet. I still think I’m hilarious.
I’ve been thinking a lot about this the last couple of days because I am also preparing to go up for tenure in a year. Early in my career, surviving to tenure and conquering my assistant professor years seemed like climbing a mountain. I watched people on social media and around me going through the process, reaching tenure and looking like they had just run an ultra marathon. They talk about the need for resilience. Well, I have learned that there are things that require much, much more resilience than getting a paper rejected or a grant triaged. The prospect of not getting tenure seemed like a life-ending experience for some. Post-surgery it’s lost a little of the gravitas. Of course, I want to continue my work, I want to train students and help patients, and I want to have been a good investment for the people of my state and institution that have funded my work. But, I’m still alive, and I can survive an awful lot, and I’m not afraid anymore. I’m just going to keep doing my job to the best of my ability.
I’ve still got a lot to learn about myself, and a lot to work through in terms of defining relationships with food and people. I don’t know how to end this post except to say that I’m working on it all a day at a time.