Many of you keep encouraging me to write but lately I haven’t been feeling it. Mostly because of that age old advice: if you don’t have anything nice to say, don’t say anything at all.
Well, sorry, but I don’t have many nice things to say because 2012 hasn’t quite been the year I dreamed it would be; cancer doesn’t exactly lead to dreams being realized or goals being met. No travel. No paying off the big bills. No taking the next career step. Just a lot of sitting and waiting and feeling crummy, both in body and spirit.
Unfortunately, it feels like I’m stuck [in a pit of vipers with jelly painted on the walls so I can’t climb out?]. Don’t worry too much, there’s still a sense of humor buried in there somewhere.
Basically, it just comes down to a few things I need. Namely, I need the simple things to be just that: simple.
I need to be able to walk out of my room and have a hot shower and a functioning stove and refrigerator. I know it doesn’t seem like much to have to walk into the next house fifty feet away for these things but it’s more about not having my–our (Sean and my)–independence than so much the ease and access to these things that everyone else can take for granted. Like I said, it’s simple things. But somehow it has become so complicated because we decided to move in before the electricity was approved and now the trifecta of the County of Maui, electric company and electrician have claimed paperwork as a modern form of torture. It’s very successful torture as after two and half months we still run two lights and a fan on an extension cord to our bedroom, still trek ourselves and food back and forth. Sean and I are a young couple trying to start a life together; isn’t that enough of a challenge in and of itself?
I need the dog to stop needing pills and vet visits (even though our vet is the best!). I need him to not have fleas. Thankfully, he doesn’t have heartworm and is now OKed to take the heavy drugs to hopefully stop the fleas that inevitably end up in our bed. I need him to not have weird bites on his head that we can’t identify because they’re making his dad worry a lot. The vet is a long drive away and gas here in Maui is expensive. But he’s my kid so there’s no question to his care.
I need a vacation. And, no, being on temporary disability insurance and not working while going through chemo treatment in the beautiful island of Maui is not at all a vacation. It’s actually another version of torture… the look but don’t touch kind. Here is the beach (but it comes with sunburn and you’re too tired for its heat, bah!). Plus, I can’t travel until I’m through most of chemo because of the exposure to all those icky airplane germs. And that inability to enjoy a vacation if I feel like crap and can’t spend much money playing on it.
I need sleep! Holy shit, man. I need these drugs I take for chemo side effects to not give me insomnia anymore. Because the answer to that is… MORE DRUGS! Which don’t work so great. Do I take one pill or two? Is the one pill not enough? Or is it just barely enough so I sleep a little but wake up enough to still be tired in the morning? Or is it that I am “sleeping” alright but it’s that drugged out kind of sleep that doesn’t really leave me rested?
I need to not cry so much because it just makes my eye lashes fall out faster. And then I just want to cry more.
I need Sean to not be stressed out. Because that just ends up in hurt feelings and/or silence. I need him to know there isn’t exactly a handbook for either of us to go through this. Nor is there a handbook for everyone around us to understand what we’re going through. I need us to get back on the track of us forging a life together (with our beautiful baby dog, of course).
I need my nose to stop leaking… I need my nose hairs to grow back.
I need to go back to work. Mostly because I need something financially and mentally productive to focus my energy on and something that gets me out of the Kihei heat during the day. But even that comes with its limits because I can’t exactly wait on inept snorkelers in the hot Maui sun with my bald head and my lumpy port and and my tired exhausted body. Hmm. I need my employers to get back to me on an office-based back up plan (maybe I can write something for them… I have a little experience with that writing thing if we could just channel my energy properly).
Sometimes, I just need to be left alone.
I need my hormones to shut the fuck up and piss the hell off. True statement right there. I am tired of chemo drugs messing with my hormones. It’s up; it’s down. It’s like a freaking roller coaster nightmare. Yeah, not the fun kind of roller coaster. More like the crappy painful old wooden ones or the ones that make you throw up just by looking at them. Men, don’t mess with this one. Don’t. Just stop right there. Check yourself. Not worth it.
I need my parents to stop worrying so much. And I know it’s their job. But I worry about them too, especially when they’re worrying about me and then it becomes this dog-chasing-tail-like cycle of worry.
I need Kihei to not be so damn hot. And dusty. And I need to not have to worry about constantly cleaning my house that is also a sauna.
I need to exercise without feeling self-conscious. If I go to yoga and can’t touch my toes, is everyone gonna stare at me because I can’t touch my toes because my muscles hate me after months of surgery and chemo or because I have a huge yet imperfectly-tied-thus-revealing bandana on my big bald head (like when I go to the beach and it’s windy and my bandana comes off a bit and then next thing I know a stranger is asking me if I’m in treatment for cancer and I have to work an awkward conversation while my dog and I just want to quietly play in the Pacific ocean but turns out she had breast cancer too because cancer just seems to be everywhere, doesn’t it)? What about surfing? I have to worry about cutting myself on coral and getting a staph infection all up in my weak immune system, suncreening every bit of me and keeping the dome under cover. Or people staring at the bald surfer lady.
I need my car to not overheat on the road to Hana. Or shake at 43 mph. Or have had a random wrench left in it for a few weeks that makes me wonder if one day it’s just going to randomly break down because that’s what I expect out of all cars.
I need everyone to remember that just because I don’t call/text/email/write/etc. back to you does not mean any of the following: 1) I don’t like you; 2) chemo won; 3) cancer won. Mostly, I’m too tired or down to add another thing to my list. I’ve been out of the day to day living of life for so long I’m starting to forget how to do it. Where did my routine go? I can get so much more done and feel so much better when I have work and purpose and routine and a job and a constantly filling calendar.
I need my calendar back. I want it to start filling with work and purpose instead of just chemo treatments and doctors visits.
I need my friends to hang in there and remember I’ll be back to old me one day, even though it still feels like an incredibly and unbearably long time from now.
I need a glass of wine. I need my liver to buck up and process out the chemo drugs so it can handle one glass of wine.
Ok, universe, do I have to wait until Christmas to officially submit my list or can you get crackin’ on this pronto?
“Any idiot can face a crisis – it’s the day to day living that wears you out.” ~Anton Chekhov
(I need this all to never have happened to me.)