Is butter a carb?
Most of the time, it feels like all I think about is food.
This isn’t altogether unusual. After all, humans need food to survive, therefore we all think about food at least a little bit of the time. Before this all happened, I’d have to think about what to have for breakfast, if I was going to pack a lunch, what ingredients we might need to buy in order to make whatever we were going to pretend to have for dinner before we ordered pizza again instead. But that was when I could eat whatever I wanted. The way I think about food is so different now. I used to look forward to food. Now I try to figure out how to squeeze the most (healthy) calories in the least amount of food so I don’t have to eat as much.
When I talk to people about what happened to me, a lot of them have questions about how I eat. And if people HAVEN’T asked me, I assume they’re thinking, “Ummmm, she had half of her tongue removed and rebuilt, how the eff is she eating anything?”
Long story short (ZING!), for a long time, I wasn’t eating anything. Not by mouth anyway.
After my surgery, my tongue was REAL messed up and incredibly swollen. I wasn’t even able to take a sip of water the first week. By the following week, a speech and swallow therapist let me drink water via a syringe with a catheter on the end, but even trying to swallow that way was incredibly difficult. I remember sitting and wondering how something I’d taken for granted my entire life could feel so impossible. I just wanted to drink a glass of water.
Since I couldn’t drink, I obviously couldn’t eat, either. This was something they prepared me for prior to the surgery but, out of everything, that was the thing I was least worried about. The surgery itself was so terrifying that I was glad I wouldn’t have to think about eating for a while. The plan was to insert a PEG (or percutaneous endoscopic gastronomy) tube into my stomach during my surgery. That’s how I’d be eating for the near future.
For some reason, they weren’t able to place it during the actual surgery. Then it took a couple of days and two more tries before they were able to insert it. I was still so out of it that I don’t remember why, and I was sedated for each try, so it’s something I’ve decided not to worry about. I think it had something to do with my general anatomy being abnormal but...shrug, oh well.
While in the hospital, the nurses took care of administering the tube feeds, which basically amounted to hooking me up to a bag of formula that would trickle into my stomach over the course of an hour or so. Sometimes they would do this while I was sleeping and I cannot express how weird it was to wake up and find I was “eating” without my knowledge. (But very convenient!)
Toward the end of my hospital stay, they decided we couldn’t freeload anymore, so they made Joe and I learn how to use the tube ourselves so we’d be able to do it when I got home and there weren’t nurses around to answer our every dumb question. A lot of people who have this surgery have the tube removed before they leave the hospital, but because I was having radiation, and radiation to the head impacts your ability to eat (plus also I still could barely drink water at that point), they left it in.
Once my tongue began to shrink, it became easier to try eating and drinking, but I was still mostly only able to drink water and juice. Eventually I worked up to pudding, but once the radiation side effects hit, I was back to just water and tube feeds. It’s only been within the past few weeks that I’ve been branching out more and trying more foods. Coincidentally, this coincided with my doctor telling me I could get the tube removed once I hadn’t used it for two weeks (provided I hadn’t lost any weight).
The new food trial and error has been incredibly frustrating. Again, it’s something I used to do without even really thinking and now it takes so much time and effort. Sometimes I try something new and I just physically cannot get the food to the back of my throat to swallow it. My tongue is an almost-normal size now, but it’s still a bit swollen (it should continue shrinking over the next couple of months), so I can’t move it like normal and I can’t really chew anything because it’s still in the way of my teeth. Sometimes I try something and I’m able to eat it, but it tastes like crap because radiation messes with your sense of taste. (Luckily this is getting better.) Sometimes the food tastes great, but my mouth is so dry (again, from the radiation) that it’s too hard to eat it. So far, my diet pretty much consists of:
Smoothies
Applesauce
Poached eggs (mashed up into little pieces)
Pureed veggies
Soup
Yogurt
Soup
Ice cream
Pudding
Did I mention soup?
So, physically, I’m fine. I’m getting enough to eat. There’s enough variety in there that I’m not just eating total crap all the time (though I have been enjoying ice cream daily).
Mentally? Is another story. Not being able to eat whatever I want or am craving is a real bummer. Things tasting “off” is another bummer. I almost cried a couple of weeks ago when I took a bite of mashed potatoes and A) it felt like eating a mouthful of sand and B) it kind of burned because there was pepper in it. (THANKS AGAIN, RADIATION).
Guys. Mashed potatoes used to be my favorite. On Thanksgiving, I could take or leave the turkey and stuffing. Mashed potatoes were the real star. I’d fill my plate up like Richard Dreyfuss in Close Encounters. When we were kids, my grandma used to take us out to lunch or dinner for our birthdays, and I used to pick this one restaurant specifically because I loved their mashed potatoes. The fact that they now tasted like crap to me made me want to throw them against the wall but I didn’t because I didn’t want to clean it up.
The taste thing is mostly manageable. As the radiation side effects wear off (which can take months and months), my sense of taste should mellow out, so MAYBE mashed potatoes will be good again eventually. The real problem is that there are very few things that have actually tasted good enough that I WANT to eat more, and it can be so difficult and time consuming to eat anything that I want to give up.
The other mental hurdle is that...food is EVERYWHERE. I don’t think I ever noticed how much of a focus food is in our daily lives until I couldn’t eat it. There are constantly people posting pictures of food they’ve made or are about to eat or what they’re making for Christmas dinner or recipes they want to try. Characters on TV are always ordering pizza or Chinese or baking cupcakes. We’ve been watching old seasons of Big Brother on CBS All Access (don’t judge us I HAD CANCER) and people are constantly snacking on chips and cookies and pizza and I JUST WANT A PIECE OF PIZZA GIVE ME ALL THE PIZZA YOU HAVE.
Sometimes it’s easy to ignore the fact that there are so many things I can’t eat and other times I just get really sad. Or mad. It’s something you just take for granted until you can’t do it. I mean, it seemed incredibly cruel that I wasn’t able to partake in any holiday foods over Thanksgiving and Christmas (NOT EVEN MY BELOVED MASHED POTATOES).
The only thing I can do in those situations is remind myself that this isn’t forever. (Also, sometimes if Joe is eating something I wish I could, I smell his food a bunch before he eats it). Sure, the progress I’m making is moving at a glacial pace, but it’s still progress. There are people who’ve had this same surgery, or worse, who are back to eating normally again. It gives me hope that I’ll get there eventually.
Until then, I guess I’ll just go eat some more ice cream.
PS: I wrote this a few days ago. Today I tried mashed potatoes again and THEY TASTED SO GOOD.