This hasn't really been my style, but today I am going to start with a little gripe. That gripe is mucositis. Fucking mucositis. What is that you say? Well, it's when you're mucous membranes hate you (mouth, etc) and decide to be assholes and get all ouchy-burny-ulcery-peely on you thanks to chemo and it's killer tendencies. Let me backtrack a touch and say that my mucositis is like, NOTHING, compared to what many patients endure, which make me feel like a bit of a jerface for whining about it. But then I remember that I couldn't chew my breakfast this morning and I get grumpy again. It feels like I scalded my mouth badly, mostly under my tongue and the insides of my cheeks, with hot liquid. No open sores or anything (and it's going to STAY THAT WAY, you hear me membranes?!), which many many patients suffer. That degree of mucositis often results in the patient having to receive something called TPN, which is an IV nutrition (not a feeding tube, it's like a milkshake or something you get through your port). TPN is bad news for your liver and kidney function, so I'm basically hellbent on NOT having that happen. That means that even though it feels like I'm chewing glass, I've been ordering and nibbling what I can. This morning though, I got just fucking sick of it and ordered one of those instant breakfast drinks. Man, was it friggin DELICIOUS! Because mucositis goes away basically as soon as you engraft (or those little donor cells start a grownin'), and I kinda like this breakfast drink and applesauce combo, I can deal with this for a few more days. This, my friends, was my breakfast:
Last night, when the mucositis was rearing it's ugly head (it feels awful in the morning when my mouth is dry, OK in the middle of the day and then sore again at night- just to keep me on my toes), all I could think about eating was a slice of Pizza Hut Stuffed Crust Pizza. Remember that stuff? That calorie bomb that they created when we were kids? If you were a cool kid you had Stuffed Crust at your birthday party. Man, I would have killed for a slice of that last night. Yes, I made a steadfast commitment to maintain as healthy a diet as I could, requesting that P and my Mom keep me from eating crap just because I can't eat fresh, always ordering veggies and fruit, trying to keep my diet balanced, etc. But last night? Ouf was that hard. Of course, the fact that I can't comfortably chew keeps me in a diet of soups (the veggie soup here ROCKS, no kidding) kicked up with crumbled cheez-its (oh man are those things crack). Also, as a funny aside: every morning and evening (9am and 9pm to be exact) my nurse comes in with a little cup of pills. In the morning it's all the "anti" drugs: anti-fungal, anti-viral, anti-biotic. In the evening it's a Pepcid to keep my tummy safe and this other white pill called Megase (my spelling is probably totally wrong on this one). I kind of never (OK, didn't) questioned what Megase was, until last night. Turns out? It's an appetite stimulant they put me on last week when I lost 5 pounds from being completely grossed out by food for a few days. Huh. Surprise! (?) That might explain my craving for pizza.... or maybe the pizza craving is due to the fact that I've been staring at the same four walls for two weeks has begun to fuck with my brain. Whatever.
To be honest, the food here isn't horrendous. It's not awesome, by any means, but there are a few things on the menu that I really like. In fact, they altered the menu a few days ago to remove everything fried and fatty (not a terrible thing, I get it). Things I like (grilled cheese is so last week): veggie soup (it has cabbage, YUM!), vegetarian chili, corn bread, the cooked green beans, kernel corn and peas, turkey sandwich ( on rye with mayo and pickles, of course! it's fresh roasted and really surprisingly good), meatballs and marinara (but they took it off the menu, bummer) and, of course, the cheesecake. There are other random things that I like on there that aren't made here (bagels and cream cheese, yogurts, canned fruits), but overall the food ain't the worst hospital food ever. Yep, it gets totally boring ordering the same stuff all the time, especially since at home P is an amazing cook, but it's temporary. From the few times that I've ventured into the unknown world of of other things on the menu (read: ANYTHING with chicken in it), it's been totally barf worthy. Come on! People in this hospital are already going through hell (and feeling pretty pukey), the least they can do is not ruin a simple chicken breast. Jeez.
The last few days have brought an avalanche of love from home. Some from dear friends and family, and some from dear friends of family members. To all of you, thank you for brightening my day and my room, for your words of love and encouragement, and for the big smiles. I feel humbled and blessed to call you family and friends. Thank you:)
Girlfriend has lots of stories to share today, so thanks for reading:) Missing Philly and MUCH LOVE to you!
darn that mucositis. i hope it is short lived and a distant memory ASAP. i love your spin on the food you are eating (and temporarily not eating). you'll be back in the arms of fresh fruit and veggies in no time. keep staying strong when you need to be strong, lean on P and all of us when you are feeling ... less than strong, and keep dreaming of all the wonderful things coming your way. we are all behind you ... 100%!
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