The Fault in Our Stars by John Green: Some musings.

Two nights ago I read The Fault in Our Stars by John Green as the trailer was released and my cousin convinced me it was worth the read. She was right. Everyone should read it.

The basic synopsis is that two teenagers fall in love after meeting at a cancer support group and bond over a book about a girl dying from cancer.

If spoilers bother you, you should probably stop reading (although a study showed that people actually enjoy stories more when they know the ending so I'm actually enhancing your experience).

Besides some minor medical points that I had issues with (ie I can't imagine her oxygen flow only being at 2L), it was really good. It deals with illness, death, and dying in an way that doesn't talk down to you or make it all be part of some grand scheme in the end. There was also an abundance of sarcasm which I really enjoyed.

Here were some of the things I really related to:

1) The teens talk about how awesome good nurses are and how horrible the bad ones can be. It's true. Nothing beats having a nurse that treats you like a human being and listens when you explain how you like things. Nothing is worse than a nurse who refuses to see you more than their job or who gives you pity stares and makes comments about how depressing your situation is. Ummm, thanks?

2) Being teenagers, they hate any sort of motivational saying or cliche that tends to provide more comfort to those saying the phrase than those hearing it. Even as a non-teenager, I also hate those cliches. I understand people say them because they have no idea what else to say and I get that. I have said those cliches to people in the past because I also have no idea what to say. But can't we all come up with something better? I have ranted about this in the past.

3) The boy wanted his life to be part of a greater purpose. He had a hard time recognizing that most people live and die without ever getting their '15 minutes of fame'. This is probably getting harder for people as everything now is about leaving a legacy behind (which I've ranted about in other posts) or having a greater meaning to one's life than simply being a good person. In the end, he came to the conclusion that often in our attempt to leave a mark on the world, we end up leaving scars instead and maybe leaving the world as you found it is good enough. I loved that sentiment and appreciated that in the end, the author did not make his life as part of a great plan.
So much of literature writes characters with disabilities as a) having their purpose in life being to inspire everyone else, b) a saint-like figure, or c) the villain. It is always refreshing when a person with a disability is written having a regularly complicated life filled with video games and sarcasm. 

4) The boy made his friends write their eulogies while he was still alive which I think is a brilliant idea. They called it a 'pre-funeral' and he got to actually hear all the nice things that people said about him. I think everyone should get this chance. There is the problem of never actually knowing when you are actually going to die so you could have a pre-funeral and then go on living for another year. It is impossible to know when one's 'last good day' is going to be so maybe we need to annually start telling people great things about each other on the off chance they will die that year. I think talking about death would would help people recognize how much they have impacted other peoples' lives. It might also make people more accepting of their mortality which I believe is a good thing. We really need to stop pretending that death will never happen to us.

5) When the boy died, the girl got really angry when everyone he had gone to middle school with posted sympathies on his fb wall and commented about stuff he enjoyed then but had hated when he died. She felt it was insincere considering they hadn't made any attempt to keep in touch after he withdrew from school. I agree that typing on a facebook wall wishing someone is 'up in heaven playing basketball' when a) the person no longer enjoyed basketball and b) didn't believe in a literal heaven seems like a dick move. However,  people need an outlet to express sympathies and if a facebook wall is how we do it now, that's fine. Also, people drift apart and you remember people by how you knew them in that moment. It would be unfair to think that everyone you ever knew will know your preferences when you die. There is a fine line of remembering the person as they were and remembering them how you wanted them to be.

I feel like I could ramble on about the book for much longer but that is all I'm going to say for now. In conclusion, if you have a few hours and want to spend it on a really good book, read this one.

Family Calendars.

I couldn't share these before Christmas as I was trying to limit the amount of presents that I ruined for my family. So before I forget, here are a few excerpts from the calendars I made for my family for 2014. 

Mom and Dad's theme: "NB Monthly Eats"

David and Cindy's theme: "The places you've been"

Amy and Luc's theme: "Dr. Seuss'"

A Maritime meal

To starve off any homesickness that may arrive during this bitterly-windy-cold-winter month, we made something to remind us of home. Garlic fingers! Yummm. Deliciously greasy, smothered with donair sauce. Mmmmmmm.

To balance out the grease, Isaiah made stuffed peppers which were also delicious but much less exciting.

Look at that bubbling cheese. 

Peppers stuffed with quinoa, tomato sauce, onion, and topped with cheese.

It has been a year.

It has been almost a year since my lungs got infected enough for me to be hospitalized for several weeks, cancelling my trip to Spain, and putting me off work indefinitely. What a year it's been.

I still miss work. I miss getting up every morning and doing something active (that does not involve a treadmill). I miss helping people and feeling part of a team. I miss my co-workers. I miss my giant office. I miss running groups. I mean, to simplify it, it was my job to run cooking, art, gardening, games, and knitting groups. Who wouldn't miss that?

I miss being able to travel, to leave my area, and explore new places. I have no idea when I'm going to be able to do that again. Traveling is my first love (sorry Isaiah) and honestly, it was the hardest part about this time last year. To be told that if I went on my planned vacation, I might not make it home is a hard thing to hear. There is nothing like having a doctor say you shouldn't do the thing you love to ruin your day. No matter how much I tell myself that being in Toronto is like a giant vacation with new adventures, it's not the same as having my toes in the sand in the Canary Islands. 

But, I've made it through the year. I took a tamed down vacation of camping around Newfoundland (more hands-in-mittens than toes-in-sand type of vacation) and visited France when we ferried to St. Pierre for a night. I still am technically employed as they hold my job for me for two years and then I become a general employee of Cumberland Health Authority. That means whenever I am healthy enough to return to work, they have to find a position that I am qualified for. Job security is a wonderful feeling (yay unions!).  

Right now, even though I miss work, I would be scared to return. I know rationally that I've been declining for years and that not one event made it so I am here today but I feel like working with people in a hospital may have accelerated the process a bit. Even though it was a really clean rehab unit, people are still germ-y and no amounts of Virox wipes or Purell can help that.

Thinking about going back post-transplant makes me nervous that I would be putting myself at an unnecessary germ risk.  It makes me feel like I should try to find another job that involves less one-on-one with the public. But then why did I got back to university for three more years if I'm not going to do anything with it in the end?

I have no idea what decision I would make right now. Thankfully, I don't have to make it and have to stop worrying about it because it is so far in the future that everything is still hypothetical. I can plan it all out but then I may never even get to the point where I am deemed healthy enough to return to work.

As I've said a million times, I like to have a plan so thinking about the options is what I do. However, the problem with worrying, that Isaiah likes to remind me about, is that the scenario that actually happens is rarely the one you imagined. There is nothing I can conclude at this time so I need to stop thinking about it. And who knows, maybe there is a plan C where my crayon art will sell for millions and I can travel on the profits (hmmm, actually that will be my new plan A).

I have a grocery cart!

I went to the zoo again today! While the zoo in winter may not sound very enjoyable, the pavilions are very toasty. With many layers on, it was actually really nice. It helped too that it was the warmest day in weeks (a balmy -4). I had a pass to use before Feb 1st and a friend free for the day so it was excellent timing.

It was the perfect day to try out the fancy grocery cart that Isaiah bought me to haul my oxygen around so I wouldn't have to carry it in my backpack like usual. My backpack has max back support and straps but even with that, my shoulders get sore after carrying around the tank for hours. The cart worked really well despite the fact that some of the paths were snow-covered and was still a bit heavy to drag around but I think it was probably better on my body at the end of the day. I'll still use my backpack for the shorter trips though as the cart was no fun going up and down stairs. 

I'm going to fit right in with all the older women walking around downtown!

My friend and I's shadow hovering over Mr. Panda. Still as adorable as ever.

Hello Mr. Wombat and Mr. Roo! Winter zoo bonus: Zero crowds! There was seriously almost no one there.

The books have arrived!

[Gmail and affiliates (ie, this blog) was down for most of the day in case anyone was having trouble viewing the blog. Send your angry letters to Google!]

In other news...the books have arrived!!! Well, the Toronto ones anyway. I was so excited to get the slip in the mail but then disappointment when I saw that I had to pick them up at the actual post office instead of the front desk (I though that was why I had a doorman?). Apparently I owed 'taxes' and whatnot. Stupid taxes and whatnot.

It was super thrilling to actually have the books, even though going to get them was annoying thanks to the crazy cold wind that has overtaken the city today (yes I took the car but it was still cold). I know the e-version is up and the book has technically been done for a month or so but it seems more real when I have the final version in my hands. For some reason a .doc file isn't quite as satisfying (not that I'm anti-e-books, it's just different when it's mine).

When I started writing the book, my personal deadline was 'before my transplant'. Seeing as that is a unknown date, after Oct, I had no more time to procrastinate as I could have gotten the call any minute. So now that the book is here, I can be comfortable having my transplant knowing I made my deadline (not that I would have turned down the call on the grounds of 'my book isn't ready yet').   

So if you live in the Toronto area and ordered a book, they are here! Hopefully the Halifax and Petitcodiac will arrive next week!

Amazon does not have fancy packaging.

Yay!!!!

More crayon art.

On the winter solstice, I was feeling artsy so I made some more crayon art. Amy has dubbed it 'tear of summer' as it was cold and snowing that day and seeing as it was the shortest day of the year, it seems appropriate.

Brrrr.

It is cold out again. Boooooo. It was -18 before the windchill and whatever else, when I went outside this morning to go to physio. I know you people in other parts of Canada would laugh at that (ahem prairie people) but for a Maritimer, it is cold.

I have nothing important to say about it other than I thought my lungs were going to seize as soon as I stepped outside. And then when I got into the warm building, they relaxed and made me cough uncontrollable for a few minutes in protest. It was all very unpleasant. At least I have a massage booked for tomorrow so my knotted shoulders and back can get some relief from all my coughing and shallow breathing. Hopefully it warms up again for when I have to go outside next. I would be happy with -5 for the rest of winter. Anyone want to arrange that for me?

Baselines.

I'm feeling a bit better! Better enough to feel as though I should go to physio. I guess all the tea, soup, and watching Netflix really paid off. I took it a bit slow on the bike and treadmill as I didn't want to exhaust myself. The physiotherapist asked me if I was feeling back to my baseline. I told her probably not but I have no idea where my baseline is anymore.

As I've said in previous posts, I am super bad at recognizing where I am health-wise as I tend to adapt to however I am currently feeling. Also, my health has been declining so slowly that it makes it really hard to tell. I can say if I feel better or am coughing more or less than yesterday but ask me about a week or month or year ago, and I am usually just guessing. It would be different if I just woke up one day and was short of breath and coughing. Then I could tell you for sure.

About a year ago, I had pneumonia and was being admitted to the hospital so comparing me to a year ago doesn't really work. But a few weeks later when I was discharged, I felt awesome as I was basically a walking antibiotic. So that doesn't really count either. Then when the antibiotics left my system, I went back to feeling how I had before I had pneumonia. Only I felt a bit better as I wasn't working and slept a lot. Would that be my baseline? I feel like there are too many variables as a human to know for sure what your baseline is. I feel worse in the cold, or when its humid, or when I have to wake up early, or if I'm stressed about some life event. Maybe I just have a bunch of different baselines depending on the scenario.

This is why I like objective measurements like x-rays, blood tests, or lung function tests. They can tell me conclusively whether I am better or worse. My objective measurement today was that my oxygen levels were higher than last Wednesday after using the stationary bike. However, I did take it easier today on the bike so obviously there are still too many variable differences. Arg!
Am I the only one who has difficulties answering these subjective questions? Does everyone else feel like they are just making shit up too?

Sick time knitting

I skipped physio on Friday because they don't want us to go in when we are sick. So instead I slept and then I spent the weekend watching TV and doing some drawing. I also managed to knit a cup cozy! Except this time it looks like it will actually fit a cup. Hurray!

Thank You!!!

I meant to write this last Monday but then I got distracted by my book, late night calls, and getting sick.

So here was my post planned for last Monday: 

To everyone who went to the fundraiser at the church last weekend, thank you! Thank you for your generosity. It was a bit overwhelming to hear about. Thank you for making me not have to worry about how I'm going to pay for any of my medical equipment,  or cab rides if I'm not feeling well enough to take the bus, or for parking when Isaiah has to shuttle me everywhere post-surgery. Thank you for your support and love. It makes being here much easier knowing I have such an incredible support system. I'm sure the rest of my family feels the same way.

And of course, thank you to everyone else who wasn't at the fundraiser but still offers me incredibly support.

Stop calling me, maybe?

Two nights ago, I was almost asleep at something after ten when the phone rang with a '416' number. I got a massive adrenaline rush and yelled at Isaiah to stop whatever he was doing because I was for sure getting 'the call'. Why else would anyone from the Toronto area be calling me at 10 pm?

Turns out, it was security at the front desk calling to inquire as to whether or not I had picked up my parcels as he could not find them but I had not signed the form saying I had claimed them. Argggghhhhhhh!! I was so confused, I had no idea what he was talking about so replied that no, I hadn't picked anything up that day. He called back a minute later to say he had found the items.
Thank you dear security man for almost giving me a heart attack! I hope that was worth making sure all the paperwork is filled out properly!

It took me a long time to unwind after that. It was quite the emotional rush to get right before trying to sleep.

I'm sick, Booooooo.

Since Sunday, I've been feeling more tired than usual. On Monday at physio my oxygen levels were a bit low and I found the work out to be harder but I was hoping that tea and sleep could get me out of the lull. Then on Tuesday when I coughed up some blood, I figured I was actually getting sick. I have only coughed up blood (or had a 'hemostasis episode' as the doctors say) a few time in my life and it has freaked me out every single time. Especially when the blood is fresh looking. In Hollywood, people always cough up blood and then immediately die so surely that must be true? Apparently no. Hollywood has once again let us down.

Previously, when I've panic-y called my doctor about coughing up blood, she has always said that it was probably just irritation from coughing so much. The doctors never seemed to understand why I would be panicking.Well doctor, it's because it is scary to cough and then have blood come up!

Thankfully, I already had a transplant clinic scheduled for today. This was my second transplant clinic and so far they have both involved sitting around for hours for a 10 minute doctor visit (despite being told both apts I will be seeing the transplant coordinator, dietitian, and maybe the social worker).  I told the doctor about the week and asked if I could get an x-ray to see if I had pneumonia. She agreed and send me for an x-ray, blood work, and nose swab.

She sent me home and called me around 6:30 to say that I don't have pneumonia! However, I do have elevated white blood count levels so I am to start an antibiotic first thing tomorrow with strict instructions that if I cough up any more blood to go to emerg. It has been about a year since I've needed an antibiotic for a inflammation so I guess yay for that!

The book is ready!!

The books have been ordered (expected to arrive Feb 1st), but in case you can't wait until then or were simply waiting for the e-version, it is now available for you to enjoy! Click on the tab above (the one titled "I wrote a book!") and follow the instructions to download the book to your device.

Thank you everyone for your tremendous support!

December Pics

As promised, here are some pics of a few of the things we were up to in Dec. It was quite a busy month.

Saw some Hobbit costumes at the TIFF building.

Isaiah learned about photography at the Ontario Science Center (although he mostly learned that people like to stick garbage everywhere).

Went to a Raptors game. They won!

Our Christmas Eve meal!

Christmas morning snow.

The Canada vs US women's final game before Sochi. It was really good. Canada lost.

We saw some people sing about love and vacuum cleaners (It was fantastic!).

My birthday cake! Happy Birthday Me!! (It tasted better than it looks, Isaiah pressed down too hard when putting on the top layer and all the lemon filling goodness oozed out).

We saw some aquatic life at the aquarium.

Visited the ROM to see some old stuff.

Found this boar's head tureen at the ceramic museum. I think we need one it for serving soup next Christmas. The steam would comes out of the nostrils! Mom did not agree with me.

She also opt-ed not to steal this plate to serve a meal on. Who doesn't love plates with flying children on them?

And that was some of our Dec in Toronto!

Book Poster!

I made a poster for my book! Well actually it was for my sister to hang up at work but then I figured I should share it with other people since I did all the work.

If you are outside of the Maritimes, just replace 'Maritimer' with 'Human'.

Obviously I should start working as a 'stay-at-home-poster-maker-for-self-published books'. I'm sure there is a big market for that. 

People improving!

Last month (maybe two months ago now?), I mentioned how at physio, there was a person there who was back for their first day of outpatient physio post-operation. And how they looked incredibly frail and it totally freaked me out...remember my freak out?

Today, I am pleased to report that the person was there again the same time as me and looks remarkably better. Like, is actually able to walk down the hall without looking like they might fall over and is lifting weights that are more than 1lb (it's possible I'm stalking this person). They had colour back in their face and had energy to joke around with their support person. So yay to watching people dramatically improve to make me a bit less freaked out about the surgery!

To offset my optimism, yesterday I was talking to another person post-op who had the surgery more than 5 months ago, spent over three weeks in a coma, and is only now getting back into outpatient physio....I wonder if I can request exercising with only the 'good news' people. However, they did tell me it was incredibly hard but seems to be worth it so far so I guess there is that.

It's amazing how varied all the transplant stories seem to be as yesterday, Isaiah said someone at the support group talk (yes he actually went to one and he will most likely not be returning as it was 'a waste of time') had their surgery on Christmas day (Santa does deliver lungs afterall!) and has already been discharged from the hospital.

I think the worst part is that there is no way of knowing if I'm going to be the '3 weeks in a coma' story or the 'discharged in a week' story. There isn't much I can do to make sure I get in the second group other than to keep staying active while avoiding the flu. I don't like it when things are out of my control!

I yelled at a telemarketer.

So...I may have yelled at a telemarketer....

Yesterday my phone rang with a '416' number so I obviously couldn't ignore it. Then there was a few second delay on the other end to which I knew in my gut it was a telemarketer. However, I couldn't bring myself to hang up on the off chance it was the transplant people (they probably wouldn't enjoy me hanging up on them). I put myself on the 'do not call' list but it seems that does not apply when you already have a credit card with that company.

I listened to the womans spiel from the credit card company about how they were offering me "free for a limited time!!" insurance on my credit card to protect me if I "get a critical illness, experience sudden job loss, or have job termination." I politely said "no, I'm not interested" to which the lady replied "well, Ms.Watson, most of us don't know when we will experience a critical illness or job loss."

.....that was when I may have gotten a little bit angry and loudly stated that "I ALREADY HAVE A CRITICAL ILLNESS!", to which she quickly thanked me for my time and promptly hung up.

Seriously RBC? Thanks for the reminder of my critical illness and job loss. I know it's not the woman's fault...it's the fault of whoever made the decision to use peoples fear of impending doom and loss as a marketing tool. Nothing works better than like fear to get people to buy stuff.

I should have taken them up on the offer and seen how far they would let me go before they realized how much money they would lose if they actually insured me. I wonder if they would have let me claim sushi as a medical expense? Although, much like long-term disability, I'm sure they would have refused everything with a 'pre-existing condition' clause.

So I wrote a book...

One of the projects I've been working on during my free time is writing the story of when my brother David and I cycled across Canada. I've always wanted to write out our adventure for myself as it seems like something that should be better documented. I didn't know where to start as writing 'we cycled, we cooked supper, we pitched the tent, we slept' 86 times would be incredibly boring so I started out writing one story I thought was interesting per province. 

Then I realized I had other funny traveling stories that I thought should be written down and kept writing until I had something that resembled a book. So after a lot of editing (which is so boring and made cleaning the apartment seem enjoyable), I will soon have for you (after just one more check for spelling mistakes)...

Wanderlust: That time I cycled across Canada and other stories

My "make sure everything looks ok copy". The actual copies may look slightly different.

The paper copies will be 12$ and will be available for pick up or delivery in the Toronto, Petitcodiac, or Halifax areas (hopefully by the end of the month).

For those outside of those areas or for anyone who prefers an e-book, there will soon be available as pub or .mobi download on here for your e-reader/tablet/phone.  

And if you live outside of the Toronto, Petitcodiac, or Halifax areas and feel like you must have a paper copy of the book, it will be available as a ‘print on demand’ book on Amazon at some point in the near future (However, royalties from Amazon are only about 2$/book and you would have to pay extra for shipping so if at all possible, it's better for both of us if you could buy it from me/my parents/my sister/Isaiah's sister although I completely understand if that is not do-able).  

So if you want a paper copy in the Toronto/Petitcodiac/Halifax area, please email me (adwtsn at gmail.com) so I'll have a rough idea of how many to print off (I don't want to print off too many copies and have to start pedaling boxes of them in front of the subway stations).

The end of the art lessons.

Last week was my last Christmas/Birthday art lessons.  Boo! This week instead of doing art-y things in the time I had spent last month, I went grocery shopping. It was just as lame as it sounds, although on the plus side, we have food for the next few weeks. It made me sad so I'm going to try to keep devoting two hours from my Mondays to doing art-y things because if I don't make an effort to do it, I'm going to spend the time watching the Mythbuster's Star Wars episode instead (currently playing in the background). At that would be a shame to the beautiful set of pencils I got in my stocking this year. Two hours doesn't sound like very much but it is better than the zero hours I did this week.

Here are my two final finished pieces:

Flowers!

My landscape! From a picture that I took of a sunset in Greece.

Back again.

I'm back from my self-imposed vacation! I hope everyone had a fantastic holiday and new year and managed to eat a lot of yummy treats. I felt like the two weeks flew right by. We were pretty busy with visitors and had no time to get lonely or feel isolated from anyone. After Isaiah's sisters left, my brother and his wife were here for four days and then my parents were here for a week. It might actually be nice to have a week or two to veg out and not go to any museums. The weather was pretty horrible but we managed to still get out and do a lot of touristy things and see a lot of Toronto (I will post pictures of some of our adventures soon).

I was back at physio on Friday. I was suppose to have been exercising while they were closed over the holiday but I figured that walking around museums counted and slacked off instead of going to the gym. I took it kind of easy on Friday so I'll have to get back into the routine on tomorrow. At least they have stopped playing the horrible Christmas music so I can get back to blocking everything out with my own tunes.