There are some things you should not say to a cancer patient. Some of them are obvious like, “your bald head makes your ears look bigger” or “How long do you have to live?” and the one people blurt out trying to appear compassionate without thinking “My aunt (dad, grandma, coworker) died from that illness.” But one thing is done that should not be. Congratulating a cancer patient on her weight loss. Exclamations of “You’re so thin, here eat something!” is fine. I am thin and I do need to eat. I’ve been able to maintain a semblance of my prior body shape so I don’t look anorexic but I went from a size 8 which is a healthy size for a mom with two kids down to a 4. This is a fine size too and I do like my jeans but I was healthier and stronger 20 lbs ago. Of course my illness contributes to my weakness not the weight but I associate the thinness with being ill. I’m trying but I cannot gain. Bowls of ice cream melt on my nightstand. I eat the center of a sandwich but not the bread. I pick at my food like a person with an eating disorder. My intake of food and fluids is a struggle everyday. I have to constantly have something in front of me just to get in basic nutrition and fluids.
I usually shut down the compliments on my weight by saying, “Yea, it’s the leukemia diet”. I only eat three bites of food at a time. And times when I do get in more quantity I feel sick for hours. It’s probably going to be like this until I can start going off some of my meds and I get more energy and start real exercise instead of just physical therapy and having my handsome son walk me around the block with my hand on his shoulder. (I won’t go into now how being a caregiver to his mother will affect his future self).
I know that the ideology of thinness is in the culture but I hope we can move toward regarding healthy as the ideal. And you can’t tell a person’s health by looking at them. Super thin or seemingly overweight is sometimes just a person’s natural state and not caused by an eating disorder or a lack of willpower. Even with the almost 3 lbs (2.81, I calculated) of silicone in my chest I weigh a little less now than I did in high school when I was considered to be a “big girl”. I lettered in cross country and played basketball but I was tall and thick compared to the other girls. I felt healthy so I’ve gotten over the numbers on the scale long ago. The leukemia is bringing me back to the “weighing machine” as my non-native speaking physician calls it. The numbers tell her what is happening in my body and a trend downward is not good.
I will admit to hyper-focusing on my appearance as an escape and a way to maintain control. If I don’t look sick then I am well, right? For me the slogan, “Look good, feel better” is true. I do it for my daughter too. The boys never notice but for the first time since my transplant I played around with makeup a couple weeks ago. Amira noticed right away and told me that I look cute and that she can tell I’m getting better because I put makeup on. She didn’t mean that I look so much better with makeup or that she prefers me with makeup but she took my effort on my appearance as a sign that I’m recovering. It’s hard to find a way to teach her feminism and not basing your self-worth on your appearance while at the same time not discouraging her forays into makeup.
My daughter doesn’t eat. She is extremely picky. She wants to argue and negotiate. I don’t make her eat but if she doesn’t there are no snacks. Afraid that she will starve I will let her eat an apple if she sits and stares at her plate and refuses to take even a bite. Many nights of the week she will eat just an apple for dinner or nothing at all. She doesn’t seem to register hunger like a normal person. She will eat something if she likes the taste of it but if not she would rather just not eat anything. The thing about how kids will eat what they are served if they are hungry enough doesn’t work with her. I completely understand now. We both sit and look at our plates of homemade meat and vegetables (generously delivered weekly by Jeffrey’s coworkers) and for my sake and hers I eat it. Not all of it but enough.
The hospital wants me to gain. If I’m not able to eat and my weight trends downward they will suspect a possible outbreak of GVHD of the GI tract. An endoscopy and colonoscopy are needed to rule this out. To avoid these procedures I want to eliminate cause for concern by maintaining my weight. With an appointment looming tomorrow for a bone marrow biopsy I weighed myself today and came up 3 lbs short. I attempted to bloat my way up but it was a massive fail. I will wear heavy clothes tomorrow and hope they don’t notice.
My afternoon snack. The nutritional information said the total on these is 1000 calories. I was able to eat a few bites of each.