Dear Santa

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

Ha ha

 

(I need this all to never have happened to me.)

Oh, Crap

Yeah, literally, sometimes.  Chemo isn’t pretty.

Pardon the hiatus but I’ve been a bit busy working my way through all this shenanigans.  But I’m back.

You know how every now and then things can go from bad to worse until you are looking up at the sky saying, “ENOUGH already!”  And then a bird shits on you?  Like the icing on the cake.  That’s what I have been dealing with.  After dose four of Adriamycin/Cytoxan (the really bad stuff), I was doing alright for a day or two and then it hit me like a freight train and I slept for roughly 50% of the time.  Yes, literally 12 hours a night and resting during the day.  Then the worse came as I had shooting pain in my lower back; the debilitating can’t move sweating kind of pain.  The next day it was off to the Doctor but she could find nothing more than a touch of a bug.  Luckily, the pain did not return.

I made it through and graduated down a level to a new drug combo of Taxol/Herceptin.  The nurses and doctors assured me the symptoms would be less extreme than the other drugs which means I can get this drug weekly (get through it faster).  And, yes, the side effects so far are not as bad as the first pair with the exception of one terrible side effect: spending too much time on the can.  My poor digestive track is a noisy nightmare.  With round one done on Monday, it took until Saturday for my system to feel a bit normal.  And I go back for another round on Monday!  I finally broke down and bought the over-the-counter fixer-upper drugs but I absolutely despise that I have to take yet more meds to fix what the chemo meds are breaking.  Plus it’s simply gross and embarrassing.

In case you were still unsure, do not get cancer.  It sucks.  A lot.  I’m two months in to chemo and all I can think is how I have an entire year more to go.  And in three months I will start a drug that I will take for five years.  FIVE YEARS?  And it’s not like a nice side-effect-free five years.  Oh, no.  I get to experience a menopause-like state for five years.  What the hell?

How do I live in the moment and enjoy very day when all I want is for time to pass quickly?  I want these three months of drugs to pass so that my digestive system can recover and my hair will grow back.  I want a year to pass so that I can stop going in for chemo altogether and I can get rid of my port.  I want five years to pass so that I can stop taking medications and maybe, just maybe, be done with treatment.  Oh, oops, I forgot about radiation and finishing reconstructive surgery in that timeline.

I’m at the age of my life where I should be focusing on excelling in my career and perhaps planning for a family future.  But even in those places I am completely stuck.  Chemo is mental torture too because the motivation is there but I can’t do anything about it.  I want to work so that I am engaging my brain and earning money and adding to my savings but when I need to sleep all the time and be near a toilet the rest of the time, it doesn’t exactly allow for a productive go-get-’em career.  Nor do I have much option to search for a job that would accommodate those needs.  Even now, I am waiting to hear from my job on how I can work something out to go back to work part-time in the office; I wont exactly be the poster child for customer service in the tourism industry quite yet.  (Anyone that doesn’t know, I work on whale watching and snorkeling boats in Maui as a marine educator, noodle-hander-outer, free diver, lifeguard, crew member and vomit patrol artist).

But I have plenty of time to think think think about all the shit I cannot do, all the things I get to do “when I’m finally done,” and the fact that that phrase holds no water because with cancer, no one’s ever “done.”  Yes, welcome to my pity party and no, I’m not done yet.

My nose is constantly running just a little.  No one told me what this is a side effect of.  But I always have to carry tissues.

I have to cover my head when I go out in public not for my “comfort” but because society immediately judges me as weaker because I have no hair.  Thanks, society, but maybe you should assume I’m crazy like when Brit shaved her head.  Yup, I get those pity looks all the time and I try to take advantage of it where I can because why not?  Mostly I just want people to stop looking at me like that.  Stop assuming my life is over because I have no hair.  I’m sure I’m as guilty as some of you for giving that look to others at some point; it’s just the way it goes.  Cancer sucks is as much a universal as is hairless usually = chemo/cancer.

I’m a good patient because I follow the rules and do what the doctors tell me.  But I do that because I just want to get through this as fast as possible.  And I want to do it right the first time so I never have to do it again.  Yet, I’m a bad patient because I am too stir-crazy and restless to just sit around and go through this.  Sure, I can nap like a champ and couch-surf like a pro but in my head I’m going off the wall nuts, itching to get back to work.  I’m not even allowed to go anywhere with crowds because my immune system is too weak and compromised.  So I cannot attend a class or a seminar or a talk or go to concerts to pass the time.

I know you read this and wish you could do something and for what it’s worth you’ve done what you can and there’s also nothing for you to do; you can’t make time speed up and you can’t make the cancer to have never existed.  We’re just stuck in this.  That’s the worst part, isn’t it, the pure and total helplessness of it all.  I can see why some people say no to chemo or give up on it or try it one round and then never again; you have to give up your normal life for a hope and a chance.  Granted, the other choice is usually worse but I still get it.  I imagine if I wasn’t a commitment freak and a see-it-to-the-end kind of person, I’d have thrown in the towel on this by now.

I also want the best chance at living a long life, so that helps too.  You know, I’ve got shit to do.

Now, if you could just call up my boss and tell him to put me back to work doing something fun and exciting before I go truly nutty we might be making some progress!