If you told high school-me that I could one day be thinner than any goal weight I’d ever set, I probably would have asked where to sign up. Never mind that the cancer wasn’t even close worth it, it’s been just as tough being too thin as it was longing to be.
Following a diagnosis of acute myeloid leukemia, I had a bone marrow transplant in September 2015 and promptly developed graft vs. host disease of the gut. Graft vs. host disease occurs in bone marrow transplantation when the graft (new bone marrow) doesn’t recognize its host (my body). Grade 4 is the highest grade, and that’s what I had. Yikes. As a result, my bone marrow so profusely attacked my digestive system that I was unable to eat or drink for three months.
From November 2015 to February 2016 I laid in a bed at Children’s Hospital Oakland. First round treatments did not work. Then, second round treatments failed. There was a lot of pain involved, but what I remember most acutely are the hunger and the thirst. I watched copious amounts of Food Network, especially shows involving eating competitions. I spent my nights watching the host of "Man vs. Food" do ridiculous things like eat a twenty-egg omelet in an hour or twelve tacos in three minutes. The more food, the better.
Of course, when we finally found a treatment that worked and I began to recover, my doctors didn’t immediately unleash me into the world of food competitions. The first day I was allowed just a few bites of plain spaghetti. (You might think you’ve had plain spaghetti before, but I promise it was seasoned with olive oil or butter or sauce. Truly plain spaghetti is sticky). I was allowed one food per day from a small list. The food had to be low spice, low fat, low fiber, low acidity, low taste, and low fun. Chicken broth, white bread, canned peaches. Once, someone gave me sherbet with a trace of dairy and I promptly threw up in bright orange.
A few months after I was discharged, when my diet was still bland and people were still trying to force-feed me weight gain shakes, I became fixated on ketchup. In what is now known by my family as the infamous “ketchup fight of 2016,” I argued with my doctors, who insisted it was too acidic, and with my mom, who had just watched me lose 40 pounds and most of my dignity. I cried to my doctor until he agreed that ketchup was important enough to my quality of life to allow. And so, I ate my ketchup on my unseasoned chicken tenders and egg whites and imagined a day when I could eat anything I wanted.
I’m now 19 months post-transplant. I still have graft vs. host disease, but it’s chronic instead of acute now. It’s milder, and on most days I manage three meals. But I still struggle to maintain my weight, I often wake up nauseous, and a hint of spice sets my mouth on fire. Even when I get enough calories, my gut struggles to absorb them – recently, I accidentally lost twenty pounds in two months. After a come-to-Jesus talk from my oncologist, I was put on the mac and cheese diet. Yes, I was instructed to eat a box of Kraft mac and cheese every evening. He tried to push the weight gain shakes first, but I threw those up all over the hospital for a year so they have bad associations. I can reliably get Kraft down, though. It’s ridiculous, I know, but I’ve gained three pounds in the last month.
Meanwhile, I’ve never been so heavily complimented in my life. I get “You look GREAT” all the time. Of course, I’ve set the bar pretty low these past few years -- between the baldness, moon face from prednisone, and general illness. Still, every time I hear those words I'm reminded of just how sick I still am.
For me, obviously, being thin doesn’t mean I’m healthy – it’s quite the opposite. I’d like to tell people who compliment me that I'm skinny because I have a disease, that it’s stressful to force food into your mouth when it might make you feel sick, that I’d like to weigh a healthy weight without having to consistently eat mac and cheese for dinner, and that – most of all – I want people to stop forcing me to eat.
And, I’d like go back to high school-me and tell her that being thin isn’t all it’s cracked up to be.
Brooke Vittimberga, Stanford ’17, is a human biology major, blogger, and research assistant at the Stanford Cancer Institute. On June 18, 2015, she was diagnosed with high-risk AML, and she had a sibling-matched bone marrow transplant on September 24, 2015. This piece is part of a series in which she’ll share her experiences.