I just remembered I had a blog...

It's early Saturday morning and I am comfortably reclined in the outpatient IV room at the hospital for my daily dose of Caspofungin. Paper cup of tea, just ate an astronaut's breakfast of pills and I have another hour to go before I do the 'walk of temptation' past the hospital cafeteria and ogle the daily pizza selection. It's a miserable lot in this room today, or maybe it's just my inner snob being judgemental at the holey-socked miscreant and his homely girlfriend or the too-loud ladies with their dirty shoes on the chairs or the glaringly annoying number of people who are unable to obey the abundant 'CHAIRS ARE FOR PATIENT USE ONLY' signs. Sigh.

There is a point to this rant, I'm sure. Four weeks ago at this very time I was in surgery. Four weeks exactly since Dr. Ken Stewart was wrist-deep in my chest cavity playing switcharoo with my organs. I wonder if they play music while they operate like they do in the movies. I wonder what my soundtrack was... The good news is that, judging by my aforementioned rant, I appear to have come out the other side with my spirit intact and my personality still on the adorably gritty side.

I still have a ways to go with the IV so hold on to your hats, we have a lot of catching up to do.

It's been a productive week, my first week out of the hospital as an ordinary citizen again. I did a three week stint in the hospital; the first week was a haze of invasiveness and strong narcotics of which I remember very little, the second was far more pleasant thanks to the kindness of nurses but still heavy on pain which I spent in a state of epic stoniness to keep from ripping the chest tubes out and running for my life, the last week was a kind of slow torture, just waiting for one final chest tube to stop draining so that I could be set free in to the world once again. This week, my first week of freedom, of real showers and real beds and television and internet, has been rejuvenating. PLUS yesterday I had 32 staples removed from my chest. Sounds impressive but that was only half of them. The other half come out next week, then I'm just a PICC line away from being able to blend amongst the gentiles once again.

So I forget how to write a little, bear with me as my story structure is non-linear. YOU WILL READ WHATEVER I DECIDE TO TELL YOU IN THE ORDER THAT I DECIDE because this is the IV room and I am just trying to keep busy to keep from screaming WHY DO YOU PEOPLE THINK THAT RULES DO NOT APPLY TO YOU? And GO BUY SOME NEW SOCKS AND HAVE A SHOWER. Ugh, people.

So four weeks ago I got my third call for lungs. After two dry runs, I was at the point where I was no longer nervous, just eager to get things started and get it over with so that I could hopefully have all of this behind me by my 30th birthday (which is June 1st) - side note, I counted out my weeks yesterday and saw that June 1st lands within the 12th week of my stint here, which should be my LAST WEEK. I was told by one doctor that they have in the past allowed people to leave early if they are doing exceedingly well and I brought it up with another doctor and the nurse yesterday and they weren't keen on making promises THEN the nurse handed me a requisition form for an MRI on June 2nd. I may need to kung fu fight someone on this one. I would like to be PICC free and home for my birthday. I will have to work my magic on the other three doctors...

So I got the call at 4:26 on Friday. I was in the middle of talking to a friend when the other line clicked in and I assumed it was the transplant co-ordinator calling to schedule my three-month check-up. So I switched over and when she gave me the offer, I literally told her that I really had no other plans that night, so why not. I was so calm that mom was confused as to what the hell was going on. She said we had a bit of time and could drive if we wanted to or we could arrange to fly but after two flights, I was over the thrill so mom and I hopped in the car and had a nice, calm drive to Edmonton. Leaving the house in Airdrie was the last time I drew a breath of fresh air for three weeks.

I didn't call too many people of post the latest call on facebook. I told my brother not to play communications officer until we knew for sure that surgery was a go. It was hard enough getting people's hopes up the first two times. This time, things were calm. Lauren, Chris and dad arrived a couple of hours after mom and I, we were out of worries and tears after the first two attempts so Lauren and Chris just sat with me while I tried to nap and then around 3 o'clock, the time actually came. Up until that point, I was daring the universe to prove me wrong and show me that surgery was actually going to happen.

Also, oddly enough, that Friday, Ian was getting on a flight to come over for his spring break so I managed to reach him in time to tell him to switch his flight to Edmonton and he landed not long after I got out of surgery.

So my family got to walk along with the stretcher to the surgical waiting room. This dark room (it was 3 am) where I laid in this bed, gowned and gloved and capped while they hovered nervously around me. I wanted to save my family and myself from having to have forced, meaningful conversation so I demanded silence, which of course my dad couldn't abide and he mumbled awkwardly about how he likes to eat things in 4s and 6s because that's how many people are in our family (kids/people) and I was in bed 4 so it was some sign or something. THIS IS WHY I DEMAND SILENCE. Sigh. The surgeon came in and asked if I had any questions and after two dry runs all I had to ask was 'Are you going to do a good job?' He told me that one of my parents could come in to the OR while I was being put out so my poor mother came in for the HORROR.

 I am a pretty tough kid. I can deal with a lot with a brave face but I fear needles a little. But I can handle it. I fear them most in my wrist arteries and neck. Before they put me to sleep, they needed to start a central line. My legs started trembling uncontrollably and he put the freezing in to my strapped down wrist as I laid on the cold table, knowing what torture awaited my adorable little body. Even with the freezing, I could tell that the guy was missing the arterial line in my wrist REPEATEDLY. He was so frustrated that the anaesthesiologist told me to turn my head as he tried to start a neck line and he also missed repeatedly. So the wrist guy straps down the other wrist to give the other side a go. I was sobbing uncontrollably and my legs trembled so hard I'm pretty sure the nurse was rubbing them to calm me as much as to keep me still. Finally they gassed me and everything went black.

 They woke me up about 4 hours later. I remember not much of the ICU. I have been told many things, I was terrified at first, I was hilarious, I was stoned. I was told that my mind would gleefully block out most of the experience.

OOOOH, the flush has started.... My writing time is coming to an end so I'll cease my journey down memory lane. I'll pick that up later.

 It has been a good week. Ian took the week off to play a part in my entourage, dutifully carrying my mom's hot pink gym bag around the hospital and cleaning my gym equipment when I finished with it. I took him to the Red Lobster because it was his birthday a few weeks ago and I had far too many chest tubes to celebrate with him, plus he was in another country. So it was Lobster Fest and lobster is that sea-lover's favourite food and that was his birthday date (otherwise I wouldn't be caught dead in such a place with my refined pallette.) We ordered the same meal - two lobsters with a shrimp/lobster pasta plus a potato, buns and salad. Thanks to my, hopefully drug-enduced newfound appetite, I polished off my entire plate before my boyfriend - who is literally more than double my size. It was a sight to be seen. I was uncomfortable but I'm pretty sure I still managed to polish off my bag of Doritos before I went to sleep that night....

 I still have a few pounds to go before I can stop referring to myself as heroin-chic so I am not complaining, plus my prednisone dose should be dropping for the fourth time next week so all of this will slowly improve.

 IVS are over. I still have two more weeks of this so there will be more tales to follow...

My conscience is making me do this...

So I have been waiting for my transplant call for 46 days now, 45 night of going to bed with the phone. I’m seriously not expecting the phone to ring any time soon. My pulse doesn’t quicken with it lights up in the late hours of the night. My boyfriend lives across the ocean and sometimes forgets that a four hours time difference plus beer plus phone means awaking the dragon. I’m supposed to have a bag packed with some very specific things that I haven’t bothered to assemble. My friend sent me a suggested packing list and I’ve gone so far as to deleted the things on there that don’t apply to me. So that is progress but I’m more concerned with figuring out who is going to take care of my Gameboy when I’m incapacitated. IF YOU DON’T WATER THE FLOWERS EVERYDAY THEY DIE and then my neighbours will move out and cockroaches will infest my house. (Seriously, don’t start playing Animal Crossing, it will take over your life). THAT, I have taken care of, Lauren will do it. Phew. Who says that I’m not preparing for transplant?

I have a friend or two who are teeming with excitement at getting the call, who can’t wait and just want it to happen already. Personally, I’m cool with it taking a while. I have come a long way since I started this journey 21 months ago. I can now talk about transplants without bursting in to tears, I no longer think that it’s likely I won’t live through the surgery. That took about eight months. Hurray for personal growth. Now, I busy myself with worrying about the minutia – how I’m going to be able to deal with not being able to shower and wash my hair everyday while I’m all stapley and tubey and bedridden after surgery. Seriously, if I don’t get to shave things and shampoo and slap on a little mascara, I don’t feel like a human being. I worry about not being able to dress myself and wear a bra because of stitches and sternal precautions. I worry that I’ll get the one surgeon who does the incision that goes directly down the middle of my cleavage. My vanity is apparently an obstacle in my road to health. I make no apologies.

My goal is to get through this surgery and come out of it some super version of myself. A better version of me. Carly 2.0. I don’t want become afraid of the world because of being immunocompromised, I don’t want to become some inspirational poster-girl who climbs Mt. Kilimanjaro, I don’t want to find Jesus. I want to come out the other side as bitchy, sarcastic Carly, who can breathe like a normal person but takes a few more pills and just move forward.

Natalie is making me do this...

Apparently having a blog means that you’re expected to update the content more than once. This is really going to be a lot of work. I don’t know if I can handle the pressure. I’ve received more than a few harassing emails, telling me that they aren’t mad, just disappointed that I haven’t written more in my snarky pseudo-memoir of a life on hold.


Perhaps I should explain my blog title. “My regularly scheduled life...”

At one point, my big excuse for not starting a blog was that I didn’t have a snappy title. Great excuse. Then one day it came to me in a flash of inspiration and I thought that I was so unique and brilliant and it was going to be the launching pad for my intellectual musings that kept me busy during this whole transplant-thingy that I have going on. And then I googled it. Damn.

The internet can be such a self-esteem killer sometimes. I guess it’s a phrase that has been whispered into other’s ears by some shitty muse. Probably the same guy every time, recycling the same sentence because that’s as good as it gets for him. Damn, even my muse is lazy. It’s kind of like that time I thought I was extraordinarily brilliant when I came up with the idea for a Breathe tattoo, until I found out, four years after permanently scrawling it on my body that every damn CF kind with a hint of rebellion in their blood had the same killer idea. But regardless, I decided that I was cute and smart in my choice of title and I would go forward.

My regularly scheduled life is, I hope a fairly obvious play on “and now back to our regularly scheduled program.” It’s something anyone with a television has heard any time their favourite show gets interrupted by some obnoxious breaking news story or weather bulletin. It means that something that you were previously enjoying has been hijacked for some seemingly important but generally annoying reason that will soon pass and the show will go on. For the past year and three-quarters, my life has been commandeered by my need for second-hand lungs and the regular life of a 20-something year-old girl has been rudely put on hold. I was enjoying that life too, dammit.

Someday soon this adventure will be behind me and I can go back to my life, get a house, go to work, get a pet, go to movies, run errands without having to lug around extra equipment and just generally be free to re-enter society as a normal girl once again. By the time I’m ready, I will be in to my 30s. I guess we will return to my regularly scheduled life, already in progress.

Terilyn is making me do this...

Do you hear the trumpets sounding? 

Here it is, ladies and gentlemen, my long promised return to the world of writing. It's been a while, I've been busy, so very busy.  Doing nothing at all...

The reason why this has been such a long time coming, despite the oceans of time I've been wasting playing Gameboy and filling my valuable brain space with things I am ashamed to admit publicly that I have a vast knowledge of, is that just getting started on something is a dirty bitch.

See, right there, I used the term dirty bitch and I hesitiate, knowing that my eager audience is full of people who maybe are better of not knowing that such filth flies out of my mouth, although if I am completely honest with myself, people who have met me, know that my lack of filter doesn't lend well to having a distinct division between my 'outside thoughts' and 'inside thoughts.'

So there is big excuse #1, I'm unsure as to what tone my blog needs to express. To what degree do I dare unleash my inner thoughts. 

I have everyone from my very best friends to my extended family members to my health care professionals telling me that they're excited for me to start a blog, that it would be a positive use of my time, that I'm wasting my supposed 'talent' by  watching reruns of the Dog Whisperer instead of squishing my mind grapes into a juicy pulp of sarcastic prose to satisfy the secret voyeuristic needs of those bored at work. 

Big excuse #2 - I have no idea what theme I want my blog to adopt.

Let's be honest here, my life these days is so horribly dull. I'm a borderline recluse with no real hobbies of note. What makes me interesting these days is this whole transplant-thingy I have going on. Like any good recluse facing a challenge, I've scoured the interweb for information and other people on similar journeys to relate to and the one thing that is the most apparent to me is that the world needs another transplant blog like I need a carton of Marlborough Reds. 

An inspirational chronology of a life lived with chronic disease is not really my style.  

Big excuse #3 - too much damn pressure.

Thanks Kristin and Natalie and Terilyn and Julie and Harvey for making me feel like a teacher is expecting homework from me again. I had long forgotten the nauseating tension that comes from a looming deadline. 

Alright, so who is my audience? What is my message? What do I have to say?

Maybe I'll put off figuring that out until tomorrow.

Big excuse #4 - I'm horribly lazy...

Kristin is making me do this

KY: Would you like to dictate to me?
CS: I don't know what to say.
KY:Let's write it down like a script.
CS:Hee hee
See this is why I haven't started blogging. I have nothing to say. It's even weirder when I have a pocket stenographer on my bed
KY: I can't spell
CS: Spelling is important by the way. I'm a journalist, there's a lot of pressure for content and form and grammar.
KY: It's going well so far
CS: I hope you're writing that too. For the introductory blog you should introduce your theme to the world. And what are we trying to say? That Carly is bored. What do you expect to see when you log on to my blog when you're slacking at work.  What do you hope to see?
KY:An acidic tongue. Acerbic wit.
CS: I hope the blog has a spell check feature.
KY: We'll fix it before it's published