See you in the New Year!

I hope everyone is having a good storm weekend! We are doing fine and fortunately our power is going strong.

I will be taking a two week blogging break from today as I will be busy with family and Christmas and eating peanut butter balls for the next two weeks. Obviously if something major happens, I will keep you posted!

See you all in 2014! 

Happy Solstice!

Happy Winter Solstice!

The solstice marks the start of the traditional holiday festivities we will be missing by being here  as Isaiah's family has a solstice party every year that we usually attend. It will be my first Christmas away from home. I guess it had to happen at some point and it usually happens earlier than this for most people.

I'm actually kind of excited to see what a quiet Christmas is like without crazy amounts of cooking or driving madly back and forth from Isaiah's family to mine on Christmas Day. It will be different. But then my brother and wife are flying in Christmas Day and my parents are arriving a few days later so there will be no shortage of family around! 

Art lessons!

My Christmas/Birthday present from my parents this year is art lessons! I've had three lessons so far and it is pretty stupendous. The first lesson was on drawing/shading, the second was more drawing with a few painting exercises, and the third was painting the drawing from week two. Next week I will finish that painting and then move onto landscapes. Eek! Thanks Mom and Dad!

I drew some fruit!

Painting to be finished next Monday.

'Tis the season for Peanut Butter Balls!

Time for some Christmas baking! I love peanut butter balls so much, I really should make them outside of December. Now to somehow eat them all before Isaiah gets to them.

Balls pre-chocolate.

Post chocolate! Yum!

I had too much melted chocolate so I mixed up some more peanut butter + rice krispies, put it in the bottom of the muffin cups, and poured the chocolate on top. I'm sure they will be delicious too.

No more Rudolph!

The music at physio is driving me crazy! Usually they just softly play classic rock so I can block it out with my headphones but the last few weeks they have been blasting the Christmas radio station and I can't get away from it.

I'm not anti-Christmas music but it isn't exactly the most inspiring work out music. Nothing like Frosty to get you in the mood to lift weights! What they need is some Christmas workout music. Someone could make a lot (ok maybe not a lot) of money tapping into that market!

I demand only techno Rudolph from now on!

Santa brings lungs?

At the gym last week, I heard a few people say that "they have been good so they hope Santa brings them some lungs." For some reason made me feel really sad. Not because I think these people actually believe Santa will bring them lungs, but it hit me that while they were wishing for new lungs from Santa, in another part of the hospital, a different family is hoping Santa will bring them a Christmas miracle.

It usually doesn't bother me about the fact that someone will have to die in order for me to have my transplant. I think it is because I will have distance from the other family and have no part in the donors life or death. It is easy to deal with because I see it as a random part of life over which I have no control. It is an unfortunate part of the donor process but if I can benefit from someone's death, I'm not going to pass that up.

However, for some reason actively wishing on a time frame, somehow makes the other family and the other side of the transplant seem more real. It seems more like "I hope someone dies over Christmas so I can get some Christmas lungs". And that doesn't seem very Christmas-y. I don't want anyone wish a horrible festive season on anyone.

I realize that people didn't mean it that way and I'm sure I'm over thinking it wayyy too much. I even find it weird that the comment made me feel this way as I make inappropriate 'where the lungs come from' jokes more than I should. However, I shouldn't be surprised that at some point I would be forced to actually consider the real implications of the other side of the transplant process.

Tiny Coffee Cup Cozy

I haven't been knitting too much lately as I've had other projects plus a visitor last week (yay excuse to dine out and go to new museums!...not that I really need an excuse...) However, I did want to make a coffee cup cozy for a certain someone who goes to Starbucks a lot in time for Christmas. Since my hat disaster, I thought maybe I should actually follow the pattern this time. So I did. And it still turned out too small. Argggg!!

I tried putting it on a cup to stretch it out but it didn't stretch very much. No coffee cup cozies for anyone this Christmas!

To be used only with tiny cups.

What will I be doing next June?

I have been working on a DIY wedding project this week for my friends wedding in June. When I agreed to be listed, I resigned myself to the fact that I probably wouldn't make it to her wedding or to the other wedding of friends happening in May. I assume I will either be still waiting or in recovery mode by the time their weddings role around. However, I still have been trying to keep some hope that I can be there so I haven't 100% ruled it out yet.

Then last week at physio, there was a person talking about how they told his doctor they would like to be at their child's graduation in April and that the doctor had given them hope by saying he would get them there. While I think that is a ridculous thing for the doctor to say unless he knows something more about this system than me, it does give me hope that maybe I will be at the weddings after all. Although I'm not going to start booking flights home just yet. 

There is another person at physio who said they decided in the fall not to go on their annual southern Christmas vacation as they didn't want to take themselves off the transplant list for a week and they thought if they had the surgery, they wouldn't be discharged from the program before Christmas. That person is being discharged this week and could have totally gone on vacation so should have bought a ticket. So really there is no way of knowing how to plan anything. It drives me crazy! I like having a plan! 

So many paper hearts!

Book Clock

Last year for Christmas, I made a 'book clock' for my sister. She was confused when she opened it as she thought it was the actual book and didn't understand why it wouldn't open but I think it ultimately won her over (If you are bothered by old books being cut up, you should stop reading). I thought it was time I shared it with you as you prepare for the holidays. Homemade gifts are the best!

My test attempt. Not too bad but the clock part was wide so the book wouldn't close
(Mom got this version for the school library).

The book pre-crafting.

I use an exacto knife to cut a hole in the pages. Used modpodge to glue all the pages together once the clock fit comfortably and covered the damage with some parts of a page. After I punched a hole in the cover with a pen for the clock bits to fit, I duct taped the clock to the back of the book and stuck the hands back on. The cover was a bit thick so the hands initially had trouble moving but I after I bent them upward slightly, they worked. 

Cover the mess in the front with a nice circle of text and Voila! One book-clock ready for any book lover.

Waiting Game: 2 months.

I've been on the list for two months! Hurray!?

Let's see what happened this month:

- I learned I will most likely need a plasma transfusion during the transplant to reduce the amount of antibodies in my blood. So go donate your plasma and/or blood!

- I continue on with physio 3x/week. I think I am doing well despite the fact that I didn't do as well as 6 weeks ago on my 6-minute walk test. The physiotherapists haven't said anything about it afterward and keep upping my intensities so if they aren't concerned, I will try not to be too. I am at at the point where I can recognize everyone but don't know anyone's name. They had a potluck party last week and someone asked if I was going. I had to sadly tell them that the people with CF were not invited (it said it specifically on the notice...'CF patients are not able attend due to hospital policy'). Stupid policy. I want Christmas cookies too!

- Isaiah and I have been trying to do all the touristy things around Toronto. We visited the pandas at the zoo when my parents were down, have gone to some musicals, and keep visiting museums. There is no shortage of stuff to do in the city.

- There is nothing new from my CF doctors. They just tell me to keep doing what I'm doing. I had a visit today and I gained a little weight and my lung function remained stable. The doctor said she feels comfortable with me going bi-monthly as I will have my transplant clinics the other months. It's fine with me to only have one doctor appointment a month!

- I learned today that Ont will no longer directly bill NS for meds. They changed the policy last month and no one thought to mention it to me until now. This means I either need to get the meds shipped from NS or pay out of pocket for them here and file with the government to get reimbursed. Thankfully, I called my pharmacy in NS and they will ship my CF meds out to me so I'm not panicking but I don't understand why they make things as hard as possible for people. I don't know what happens with my transplant meds once I need those although my guess is that I will have to pay upfront and get reimbursed later. As if I want to have to think about paying for thousands of dollars worth of medication immediately after a surgery. Thankfully the CF nurse in NS is amazing and is going to find out for sure what is going on (no one had told her either, we seriously need better patient education).

- I have stopped having the dreams where I miss the call. Instead I've had a few where I am hanging out in NB or NS and suddenly realize that I need to be in Ontario for my transplant and how did I get here and what happens if I get the call!? I'm not sure if those dreams means that my subconscious wants to be back in the Maritimes or if it is just a new way of waking me up in a panic in the middle of the night. Either way it's pretty annoying.

- I no longer have intense panic about unknown phone numbers. Just a mild amount of panic. Unless I miss a number like I did when we were at George Strombo taping and then I'm back in intense panic mode. I had no message so I was pretty sure it wasn't the hospital (you would think that Isaiah not getting a call and my pager not going off would put me at ease but it didn't. Sometimes the mind refuses to think rationally). I only unpanicked when I googled the number only to realize it was a stupid 'I've won a cruise!' call. I really need to put myself on the 'no call list'.

-I am not discouraged about not having the call yet. Maybe by month 6 or 7 I'll be wondering when it is my turn but right now I still feel pretty good and have lots of visitors and activities to look forward in the next month. The average wait is 8 months so I could be here for awhile.

That's pretty much all. Who knows what exciting new developments month 3 will bring!

Questions.

Imagine you have a permanent disability or illness, just pick one at random (Let's hold the discussion between a disability and illness for a later date).  For some of you, just think about your life. Now answer the following questions:

Do you think disability is just a state of mine? If you had the option to spend one year bedridden in exchange for getting rid of your disability, would you? Would your life be better if you weren't disabled? Do you think your disability or illness has made you a better person?

These were questions that were asked at the start of the 'Disability Talk Show' podcast that I listen too (yes I realize that half of my blog posts are just responses from various podcasts). The host of the show (who has albinism) asked his current guest (both who also have a permanent disability) those questions and they laughed awkwardly and answered in the briefest possible way before moving onto other topics. No one, except the host, wanted to discuss the questions in-depth.
So let's get into it.

People don't seem to ever want to discuss the possibility that maybe not having a disability would mean you would have a better life. I understand, it is a complex topic. No one wants to define what a 'good quality of life' means to another person because when we start judging that a person doesn't have a life we think is worth living, we take away their rights as a person. That is everything the disability movement has worked hard to fight. However, we should able to let people talk about how having a disability has made their life better or worse.

Would my life be better if I didn't have CF? My initial reaction is absolutely. No question. It would mean I could have kids, owalk without getting short of breath, and have a longer life expectancy. But then does having a better physical quality of life translates to my life being 'better' as a whole? Quantity doesn't trump quality and I've had a pretty kick ass life so far. Would removing CF mean that I have the same level of psychological, spiritual, or emotional health? I don't know. Maybe I would be at a job I hate with no good friends. Maybe I would be hocked on drugs or gambling. Or maybe I would be just as awesome. It is impossible to tell.

I also find it difficult to answer 'has having CF made me a better person?'. My immediate response is no. I am not in group of people that view their disability as a 'gift' or a 'learning experience'. It sucks and I would give it up in a heartbeat. I would, without hesitation, spend a year bedridden in exchange for getting rid of it for the rest of my life. And I don't think I would become a better or worse person than I am today.

However, if I never had the disability, would I be the same person? No. As much as I don't want to admit it, having a disability has affected how I see the world so if I never had that lens, I have no idea who I would be. Would I still have the same drive to experience as much as possible? Would I still have a never quenching thirst to learn new things? Would I see disability and discrimination in the same way? I have no idea.

The only way to be able to answer any of these questions would be if we all got a 'do over' to see how our lives would be different with changes. We don't get to do that so all we can do is wonder 'what if'. I think that some people are uncomfortable talking about how their lives, or a loved ones life, would be better without a disability because it might undermine the life that they do have. It can also be a coping mechanism to say that a person is 'better off' because of their disability. I don't think it is such a bad thing to hypothesis 'what if'. In the same way my life would be easier if I had a million dollars, I know rationally my life would be easier if I didn't have CF. Admitting that doesn't takes anything away from my life or make me feel worse about myself. I'm not distressing over the fact that I don't have a million dollars in the same way that I don't distress over the fact that I have CF.

We, as a society can't have it both ways. We want to find a cure or a reason for every disease and disability without wanting to acknowledge that people's life would be easier without them. If we are honest about how much the disease sucks, then people will understand why finding a way to fix it is important. If we hush over the bad parts, no one will try to make things better because everything is fine. So, can we stop making it a bad thing to admit that having CF (or whatever disability) sucks and that people would better off without it? Doing so doesn't make me or anyone else less of a person.

Homemade ornaments.

Happy St. Nicholas Day! 

After making my Christmas cards, I had a few left-over cards that survived the card slaughter. Since our Bamboo Christmas Tree is a little bare, I thought I should make a few light ornaments that the branches could actually hold (most of the ornaments are shoved to the middle as they are heavy).

Step 1: Gather paper to use

Step 2: Cut out 4 identical symmetrical shapes (I cut out one and used it as a template for the other 3)

Step 3: Fold all in half and then glue together so the white sides match together evenly. it turns into a stack until the last one which glues to the side of the first to make it 3D.

Step 4: Poke a hole in the top with a needle, thread some string through and voila! A ornament that won't make your tree fall over.

A circular version.

Christmas Cards!

It's card making time!

Trees and ornaments seem to be the theme for this year.

There is now glitter all over the apartment!

My 'wild Christmas' themed cards.

And of course, making envelopes. Sometimes I think that is my favorite part.

Also, don't forget to leave your shoe out for Saint Nicholas tonight! (It is possible a certain someone will be getting cookies in their shoe tomorrow as I was too lazy today to leave the apartment to get candy. )

Peanut butter chocolate chip cookies are better than sugary candy right?? Right.

♫ Oh Bamboo Tree! ♫

♫ ♫♫ Oh Bamboo tree! Oh Bamboo tree! ♫♫♫

Thy plastic leaves are so shiny

Oh Bamboo tree! Oh Bamboo tree!

Thy plastic leaves are so shiny

When thy branches happen to fall

I have no worry, because I can put you together and all

Oh Bamboo Tree! Oh Bamboo Tree!

Thy plastic leaves are so shiny

Oh Bamboo Tree! Oh Bamboo Tree!

Much pleasure thou can’st give me

Oh Bamboo Tree! Oh Bamboo Tree!

Much pleasure thou can’st give me

How often has a fake bamboo tree

Be used to bring some Christmas glee?

Oh Bamboo Tree! Oh Bamboo Tree!

Much pleasure thou can’st give me

Oh Bamboo Tree! Oh Bamboo Tree!

Thy blue lights shine so brightly!

Oh Bamboo Tree! Oh Bamboo Tree!

Thy blue lights shine so brightly!

They may look a bit tacky

But they were the ones that were not pricey

Oh Bamboo Tree! Oh Bamboo Tree!

♫♫♫ Thy blue lights shine so brightly! ♫♫♫

Our Christmas tree! I may have driven Isaiah crazy with my singing while hanging the ornaments.

Language of Illness

Yesterday I listened to a super interesting podcast about the language of cancer and illness in general. The narrator, who had cancer, hates battle metaphors to describe illness about as much as me and wanted to find something better.

I hate the battle metaphor because illness is complicated and confusing and while I understand that people need a language they can use, I think we need to find something better to talk about it. Nothing that frustrates me more than hearing 'lost their battle with...disease x' or 'bravely fought a good fight but lost to...disease x'. We don't use that to talk about a heart attack (their heart defeated them) or a car accident (they lost their battle with the tree), so why is it ok to use with cancer or other diseases?

I find it makes the person a loser when they die. The 'fight' metaphor might work for some people but for those who are living with a chronic disease, there is no 'win' option. There is no possibility of getting rid of the disease so losing is the only option. (p.s. the disease of the person dies with the body so it is actually more of a stalemate no?). The documentary exploring language around illness seemed like it was made just for me.

The documentary mentioned that the first time the battle metaphor with cancer was publicly used was when President Nixon declared ' a war on cancer' and has been going strong ever since. The narrator talked to several professionals to see if they could come up with a better metaphor to describe illness. His main problem with the terminology is that when he had cancer, he didn't want to be fighting part of his own body and didn't like being told to see it as something to hate. 

A doctor of palliative care was interviewed who said that the fight terminology is often used because it can be a way for family to recognize the struggle the person with cancer has had. She did say the 'living alongside' might be more appropriate as people often 'live with illness' for a long time before it becomes terminal. I do like that idea as it is true that illness is more about 'living with' an illness rather than a full on attack. I see all my medication, aerosol masks, and physiotherapy as something that goes along with having CF rather than a way of attacking the disease so I would be happy with that metaphor. "Died after living with CF" doesn't sound too bad.  

The narrator then talked to a director of marketing for cancer research who thought that using cancer as the 'enemy' in advertising was great. The narrator tried to explain that the cancer had been part of him and he didn't want to declare a civil war on his body. Also, there was nothing he could actually physically do to fight the cancer as he couldn't cut it out himself or give himself chemo. She thought that most people appreciated their ads and saw no problem with it as they were a way to motivate people in keeping with their treatment. I guess it might help some people but I don't think turning cancer into the boogyman is a good approach. (One of their ads was "Cancer is Coming to Get You!!!", is that not terrifying to anyone else?) 

The narrator then talked to a scientist in cancer research who said the metaphor he thought worked best for the actual cancer cells was 'an orchestra' as there are many proteins and enzymes that all work together to create growth and life. Cancer happens when one protein in a cell is 'playing wrong' causing more growth than usual. He said if one member of your orchestra is playing out of tune, you wouldn't go in and bomb it, you would simply re-tune the instrument. Chemo and other treatments could be seen as a way of 're-tuning your cells'. I also like this way of approaching illness. It makes people sound a bit like machines that 'need a tune up' but seeing as I have literally called some of my hospitalizations 'tune ups', I can't find a problem with it. I would be happy with "Died because she was out of tune" (I don't think I will be getting any requests to write obituaries after this). 

I think the best conversation was when the narrator spoke to a theologian who said that when people talk about battling, they use the same terminology as when they are discussing something evil. This has created a connection that cancer or a illness is evil.  But while cancer and illness are unfortunate, they are not evil. They just are. The same way that leaves dying in the fall can be seen as sad or unfortunate but you wouldn't say that it is evil. She said it all comes down to deciding if the illness is something is evil that must be battled at all cost or is it a dying or change that is a part of life that we can grieve? I think this is an excellent perspective. Illness is something that happens and yes it sucks but that doesn't make it inherently wrong.

The narrator decided in the end that the best metaphor for him is to 'kiss his cancer good bye'. Because it recognizes the grieving and loss that happened without making him hate his body. That can be done when the illness is acute but I won't be 'kissing my CF good bye' anytime soon. It was an interesting discussion that I think we all need to have. The language and terminology we use in life is important and it should be just as important when discussing death or illness in general. Let's stop using the battle metaphor and start using something that is less demoralizing. Whether it be 'living with' or 'need a tuning' or something else that I haven't thought of.

Happy December!

December 1st! Wow, it's been two months. Still a little hard to believe.

Time to dig out the advent candle!
 

Yes I moved this here. 

Winter sucks.

The change in the weather has made me realize that I definitely need to be here for a new set of lungs. Cold weather does not work well with my horrible lungs.

No matter how much I bundle up, every time I breathe in the cold, dry winter air, it is like being punched in the chest every time I step outside. Mind you, not every single day but on those brisk days where it is well below freezing (thankfully, being Nov, we have only had a few of those so far). If there is strong wind in my face, it gets even worse as I am always gasping for breath and have to try to resist the temptation to walk backwards the entire way to help me catch my breath. I have taken to getting off the bus a stop later so I can make the walk to the condo with the wind at my back so I can breathe a bit easier.

However, when I do get to my warm destination, my lungs start relaxing just in time to start coughing as the sudden temperature change causes the asthmatic part of my lungs to freak out and I have a minor coughing fit (much to the disapproval of everyone else on the bus).  I really need a regulated heat-bubble for traveling.

I find my increased intolerance to cold weather super frustrating because I use to really like winter and winter activities. I mean back when I didn't feel like my lungs were stopping every time I walked outside. I want to be able to go skiing and skating and build snowmen! Last year, I did manage to get out skiing on a few warm winter days but I have my doubts on that happening this year (also probably because any decent ski hill is outside of my '2 1/2 hour limit'). It's no fun to be stuck inside all the time when there is fresh snow wanting to be played in.

The point is that I really should be moving somewhere with less of a flux in the weather. Somewhere like Hawaii. I should see if the government will subsidize my medical care if I move there. I did get a massage today which helped relieved some of the cold-related tension that has started to build in my neck and shoulders. I think massages, the hot tub downstairs, and never leaving the apartment is going to be my only way to survive this winter until I get my transplant.

Our first snow of the year!

What do you mean we are out of chips?

Isaiah is off playing board games tonight so I was left to fend for myself for supper. Since we are all out of corn chips, I couldn't cook my reliable 'go to' meal of nachos ('cook' is a bit of a stretch when it comes to nachos...'assemble' would be more appropriate). I had to get a little creative to get the same result without having to go to the grocery store.

How to make nachos without chips:

Step 1: Hope you have another grain around the house. We, thankfully, still had some bread left from the 'day old' bags we buy from a bakery in the Kensington Market. Each bag contains a random assortment of their breads. I thought the best choice for tonight from the bag was the mutli-grain baguette and pretzel baguette (highly recommended as you can see by the fact that it was already almost gone). Cut the bread or baguette in small horizontal slices.

Step 2: Make some flavouring. Oil, salt, pepper, garlic, and chili pepper for me.

Step 3: Lavish mixture on baguette slices and bake until crunchy.

Step 4: Assemble dip. Sour cream (30% M.F. is most delicious), guacamole, salsa, cheese, yellow pepper.

Step 5: Enjoy! They turned out quite well and were a good substite to chips.

George Strombo!!!

We went to a taping of the George Stroumboulopoulos today. It was pretty fun even though there was a bit of waiting around for stuff to happen. They taped some stuff for tonight's 11:30 pm show and also for Friday's 7pm show. Chris Hadfield made an appearance which is the main reason I wanted to go. He played a Christmas song that he wrote that will be airing during the Strombo Holiday Special. I won a t-shirt for properly identifying which TV show Rob Ford made an appearance on yesterday. Yay! All in all, a good afternoon!

We had to pretend it was 11:30pm.

All ready for Chris Hadfield!! (They obviously didn't allow pictures during the taping)

Yay new gym shirt! (It is way too big for me)

I need your plasma!

This morning I had a hematology consult. I got a call last week to tell me about the appointment and the man only said I had a hematology appointment today on the 2nd floor 'follow the signs'. Unfortunately, I didn't think to ask what unit it was in and just assumed that there was a hematology unit. Nope!

This morning, when I went to go 'follow the signs', there were no signs for 'hematology'. I asked at information and the women had no idea what I was talking about and sent me to the Benign Hematology Clinic (makes sense I guess since it has the word hematology in it). Those people also had no idea who I was and sent me to the 2nd floor. I recognized some other transplant people so I followed them and went to register only to be told that that was the colonoscopy unit and I was not on their list (huge sigh of relief). I was eventually lead to the right place when a nurse looked me up in the computer and directed me to the Apheresis Unit. I'm not sure how they just assumed  I would know that.

Of course an unexplained appointment meant that I assumed I had blood cancer. But no (I don't know why I always think cancer) turns out the doctor just needed to get my signature on a consent form for a plasma transfusion during transplant.

The actual point of the appointment was to tell me that because I have high levels of antibodies, my body will most likely start attacking new lungs (unless I happen to get a set of lungs with nothing that my body has an antibody for) before I can get started on the immunosuppressive meds. As a result, my body would reject the lungs in 48 hours and I would die. He was very blunt about the low chance of me finding a perfect match without doing the transfusion and if I passed up on one set of lungs, who is to say there would be a second pair for me, or what if I got an infection while waiting for the second pair (I felt it was a bit like 'agree to this or die' which I thought was pretty intense).

Since I am high risk for rejection because of my super high antibody count, what they do is put me on the Apheresis machine which takes my blood and centrifuges out my plasma (the super antibodies) and puts in new plasma (with fewer antibodies) and puts it back in my body. This will put me down to a 'normal' or even 'low' risk of rejection. They run my blood through the machine 4 (I think) times during the actual procedure and then once every day for the following 4 days.

The doctor said they have been doing this for 7 years and it works really well. They are one of two places in North America that does the procedure so I guess it is still fairly new but the benefits definitely outweigh the risks on this one. The risks are pretty standard; because it is a IV line (in my groin), there is the typical risk of infection or itchyness. The other risks are the ones from plasma transfusion: fever, fluid in lungs, HIV, Hep C, etc... The doctor said the risk of HIV and Hep C is less than 1 in 7 million or something crazy. He kept repeating 'there is almost no risk of getting HIV' so much that the more he said it, the more concerned I became (It's like when someone says there is nothing wrong so many times that you know something is wrong). But seriously, it's not worth worrying about.

In conclusion: I will most likely need a plasma transfusion during the operation so everyone start donating their plasma so there will be lots banked for me when the time comes!

Friday Night Live!

Before my Friday experiences gets you too down (see previous 2 posts), I did have an enjoyable Friday night at the ROM for their Friday Night Live. We went to the Wildlife Photographer of the Year exhibit which opened that night and I now want all of the pictures on my wall. They also had 3D printing where I printed out a fortress I 'designed' from an Ipad (I really just clicked on the options I wanted...it was not very elaborate). We also stayed for the band 'The wilderness of Manitoba' who were exactly what I needed at the end of a weird day.

I also ate a cricket.

Hello Mr. Toad.

My 3D creation

Cricket snack! Also, chocolate, craisins and pumpkin seeds. Fun fact: You should not eat crickets if you have a shellfish allergy (or you shouldn't eat shellfish if you have a cricket allergy)

Yes I did.

Friday's physio time was not the best.

I can't talk about the other people who are at the lung-transplant gym with me for confidentiality reasons so I will try to do this with as little detail as possible:

On Friday at physio, there was a person there who had a transplant several months ago and was returning for what may have been the first time since surgery. They were so small and had no energy when doing the exercises that it has absolutely terrified me that that is how I am going to be post-transplant. Mostly everyone else who is post-transplant at physio seems to be doing really well and never stop talking about how amazing they feel and how much their lives have improved. Yesterday, one person even tried running for the first time post-surgery and exclaimed how much harder it was than they thought it would be while maintaining how awesome it is to be able to run.

That I can handle because I can see myself post-surgery also trying to run while my body freaks out because it hasn't had that much exertion in years. However, seeing someone struggle to lift tiny weights while commenting that pre-surgery they were lifting significantly heavier weights, bummed me out even more than the 6-min walk test. I just keep thinking that could be me in a few months and I really really don't want that to happen.

Stupid 6-min walk test.

I repeated my 6-min walk test today at physiotherapy and I did worse than I did in October. Arggg!!

I was not expecting it at all seeing as the physiotherapist told me most people improve after 6 weeks and on Wednesday, increased my intensity on the treadmill as well as my weights (woohoo 6lb!). There is nothing more frustrating to me than working really hard and still getting worse. I know, it might have been a lot more worse if I wasn't exercising at all but it was still not the news I wanted to hear.

How the 6 minute walk test works is that I walk up and down a hall as fast as possible in 6 minutes while they measure my heart rate and oxygen levels. On Friday, although I walked roughly the same distance (a little less, probably due to the fact that instead of encouraging me to do 'just one more lap', she kept saying 'you know you can rest whenever you need to'...thanks for the morale boost...), my oxygen levels dropped faster than they had in October. That means that my lungs are crapping out even more than they were in October.

I feel like I'm letting myself down (even though that is completely irrational and the entire thing is out of my control). I realized a few years ago, probably as a result of growing up in the medical system, that I internalize medical failures and that I need to stop blaming myself. I don't know if other people feel the same but when the doctor praises me for something ridiculous and not in my control, like having stable blood sugars, it stands to reason that when my sugars do go wonky, it is something I've done. Instead of it being an inevitable part of having CF. So when I don't do well on an exercise test, it must be my fault for not pushing hard enough at the gym. It is somewhat easier to blame myself than to admit that I have little control over the situation and all I can do is try my best while my lungs fail.

I'm sure I'm overreacting to one test but when the physiotherapy student doing the test calls over the physiotherapist to monitor, it is never a good sign. They didn't increase my oxygen levels or decrease my intensity for my workouts so obviously they aren't too concerned but I am super bummed out about being worse than I was only 6 weeks ago. 

Mental Health...?

One thing that I have found surprising about the pre-transplant program is the lack of discussion around mental health. When I had my pre-listed appointment in July with the social worker, she talked so much about the psychologists that I thought I would have seen one by this point in the process.

Not that I feel like I need to see a psychologist right now but I think it would be nice to be checked on once in awhile. I'm sure I could make an appointment with the social worker who would refer me on if she felt it was necessary.  I just thought there would be a lot more (as in some) discussion about how to stay sane while on the transplant list.

Maybe in the support groups, they discuss the importance of mental health but since I can't go to those, I don't really know. I know that on Wednesday they talked about palliative care as the physiotherapist was encouraging everyone to go to the talk. I was told that I can get drugs from the palliative care doctor if I need anything for sleeping and that often the non-CF patients get morphine from them to help control their cough (People with CF are not suppose to suppress their cough as coughing helps get up all the crap in the lungs). I'm sure the palliative care doctors would mention mental health, especially for caregivers, as it is so important in avoiding caregiver burnout.

I feel like with everyone waiting on the list, besides trying to be in the best possible health, mental health should also be a top priority as the wait is a lot harder on the head than anything else. Surely we have all gotten past any stigma surrounding mental healthy, so why isn't anyone talking about it? Where are the discussions?

Doctor appointments

I had a doctor appointment yesterday with the CF team. It was very boring and took 4 1/2 hours. Nothing has changed since I saw them 4 weeks ago and they want to see me again in 3 weeks. These monthly appointments are going to get old very quickly. They want to see me so frequently because 1) I am new to that hospital and 2) I am listed so they want to catch any problem asap so I can stay in the best possible health. The doctor said that sometimes people have weekly appointments when they are listed to make sure that the person stays stable. At least I'm not there yet! A 4 hour appointment every week sounds really hard on the head (and the bum...their chairs are not very comfortable). I guess I will get a lot of reading done if it comes to that...but fingers crossed for a transplant before I get to that point.

De-stressing.

I've noticed recently that my panic attack moments seem to have gone away. Yay! Sure, I still have moments where I semi-freak out about why I am in Toronto and what I am doing, but the moments where I break down crying have become few and far between. 

I think it is because I am actually here in Toronto on the transplant list. While I was still in Springhill, I would freak out that I didn't want to move or that I didn't want anything to change. I think that I was also a lot more stressed about moving than I realized. So now that I'm here and all settled in, I have less to be stressed about...?

Okay, well maybe not but still, it feels good to be able to take a shower without becoming a bubbling mess.

Parade!

The Christmas Parade happened today! Anddd I totally stayed home and did laundry instead. It was suppose to rain and standing out in the rain for hours in a crowd sounded like a recipe for pneumonia to me. I gave strict instructions to Isaiah to bring me back some candy from the parade as decided to go anyway. He reports that it was a typical parade with marching bands and floats. However, there was no candy involved which is shocking. Even Springhill had candy! Boo Toronto parades! Who cares about fancy floats if you don't make children (and others...) run at you for some crushed candy canes. Springhill 1, Toronto 0.

Turns out I totally could have gone as it didn't rain and ended up being pretty warm outside. Meh. I am content with the fact that I created this delicious gingerbread latte.

I cannot make fancy designs in the foam.

Where are you McMicheal Art Museum?

Today, we went on a road trip to find the McMicheal Canadian Art Collection. According to Google, it was suppose to take 35 minutes so I figured we would get there in 45 minutes, no problem. I put the location in my phone GPS app which has worked surprisingly well for me having no data plan. I grabbed my portable oxygen tank and a water bottle and we set off!

The traffic was moving pretty well so we made excellent time. The GPS notified us that we had 'arrived at our destination' and everything. Except there was no museum. There was a school, a bunch of trees, and a strip mall but no museum. I kept driving thinking that maybe the App had the place off by a few meters or so but nope, nothing. That was when I realized that I should have triple checked that the GPS app actually had the right address. I did a quick glace to compare it to the location on Google but apparently it was too quick. That was also when we realized we had taken our actual paper-doesn't-require-3G-to-work-map out of the car.

So I did what I always do when I'm stranded and need information from the Internet, I called my sister. Except she didn't answer her phone so I then called my parents. We couldn't really tell them where we were other than 'on Islington Rd. somewhere in Vaughan', so all they could do was give us the street number, address, and postal code of the museum. We had the right street name, so where was the museum? We typed the postal code in the GPS and that gave us directions to a location 15 minutes away.

We figured we had no other good option and proceeded to follow those directions which led us past fields and farms into the middle of an industrial park. I knew we were going astray as soon as we left the main road onto some industrial road but figured we should give it a shot. Unsurprisingly, the art museum was not in the middle of the warehouses.

Attempt number 3 meant trying the street intersection in the GPS. It was of course 10 minutes away but that was better than the other side of the city. As soon as we pulled onto 'Islington St.' once again, I knew that we were on the right track. After driving through Kleinburg (which looked adorable and pricy), there was the museum! Hurray!

Lesson of the day: Don't trust the GPS! Turns out we were on the right street (Islington Rd is super long) but just had no idea how far up we were suppose to be. We are going to get a good road map of Ontario asap.

The museum was good, just the right size for me to get through before getting tired. There were only three rooms for the 'Group of 7' art which was surprising seeing as I thought it was their museum. The other stuff was pretty cool though. One of the rooms had paintings where the artists 're-imagined the works of Tom Thompson' which I have interpreted to mean reconstructing the painting using a lot of paint to give it a '3D' effect and add in some people in the background. Except the people had globs of paint as faces which was a bit unnerving. A girl kept walking around screaming 'zombie!' when she saw one which was pretty much my reaction too except without the screaming. If I hadn't been told to stop taking pictures, I would have taken a picture.

Art!

These were depressing dioramas in floating balls about how we all hide our lives from everyone else. In the next room it was all about the rich people live luxuriously while the rest of the world lives in poverty. The third room was about all the horrible things the Natives went through with residential schools. Sigh.

Trees!

 

Thank you ❤

I know I've said it before but thank you everyone for your overwhelming amount of support. Terrifying amounts might more accurately describe it. You are all crazily generous and amazing in every way. It really does help to know that we have so many supportive people who are just a phone call or email away if we need anything. All the support makes the waiting stress a little bit easier. I have no idea what is going to happen in the future, I have no idea what is going to happen tomorrow, but it is such a relief to know that no matter what happens, I have so many people sending positive vibes my way.

Thank you all you awesome people! ❤

Lung transplants and life support.

I got a really random call from my Halifax CF doctor last week while I was eating breakfast. She called to tell me that that if I get a bad infection and need to be put on an artificial respirator then I am still eligible for a transplant. Apparently the transplant coordinator was suppose to review that with me, realized she forgot, and then called my Halifax CF doctor to call me to talk to me about it. The doctor told me they just had to have verbal confirmation from me that I agreed to still go ahead with surgery if I was on life support.

I had assumed that they just did the transplant anyway but I guess it makes sense that they should actually talk to me about it. I am not overly fond of the idea of being on life support for an extended amount of time but if I was just one it for my lungs and everything else was still working fine, I guess it would be ok for a little bit. I did ask the dr about the recovery prognosis for having the surgery from being on life support vs regular. She said that while it does mean having a longer recovery, since I am young, I have a good chance that I would have a normal recovery. She didn't give me any numbers but she seemed to indicate that if I was 50 or 60 than I would have to really weight the odds as those patients tend to have a painful recovery with little chance of returning to their previous lives but since I am young that I should be fine.

So the moral of the story was not to panic if I get super sick and need to be put into a coma as I can still have the surgery. She stressed that I would be at the top of the list in that circumstance so I guess that is the one benefit if that situation does arise. It is all hypothetical right now but I suppose it is important to work out the 'what ifs' for all the possible outcomes. 

Pandas!!

My parents were here this past weekend as dad had a volunteer conference and mom wanted to visit. We had a busy weekend doing touristy things around Toronto while they compared everything to how it was when they lived here in the 70s. I carted my oxygen all around the ROM and the zoo which meant my shoulders were sore on Sunday but it was worth it for the pandas. It was great to see some family. It feels like I've been here longer than a month and half sometimes.

Panda!! They really are adorable. The other one was sleeping in a corner.

Rhino

This sloth was adorable, it was motoring around (as much as sloths can) trying to escape the little monkeys that kept jumping on it.

Not at the zoo but at the old Maple Leaf Gardens for the annual 'Hockey Hall of Fame old timer's' game.

I have no idea which team won.

Remembrance Day.

I am so perplexed why everything is open here today.  I thought Harper made Remembrance Day a federal holiday? Apparently Ontario didn't get the message. It is such a change from the Maritimes where everything is closed today.  I felt a little weird about walking past the cenotaph ceremony happening at U of T to go to physio. However, at 11 everyone shut off the machines and had a moment of silence which made me feel a bit better.

Thank you to everyone who fought for our country in the fact of great injustice. Lest we forget.

Maybe the helmet-less cyclists in Toronto aren't as dumb as I thought.

It has come to my attention that perhaps everyone in Toronto is super ahead of the times and have acquired the latest technology in helmets and I was wrong to be so judgmental.

Introducing: the 'invisible' helmet. It is a stylish collar that turns into an airbag that wraps over your head upon impact. It complies with all of the EU regulations for helmets, you don't get helmet hair, and it provides 3x the shock absorption of a regular helmet! That's quite a significant improvement. 

This blows my mind and I really want to try one except that they are 400 Euros and I would probably forget to shut it off after cycling, drop it on the floor and have it inflate. Sigh. I guess I'll have to deal with helmet hair and a sweaty head for now (although not right now as I have become wimpy about cycling in the cold...I mean next summer). Plus I think you would still get a 'no helmet' ticket in the Maritimes with one of these on. 

The Swedes invent the coolest stuff.  http://www.hovding.com/en/

Happy 30th Anniversary Lung Transplants!

This year marks the 30th anniversary of the first successful lung transplant!

In 1983, Toronto General Hospital had its first long-term single lung transplant.  It was the 45th transplant attempt at the hospital and the first to be a real success as the man (known forever as 'patient 45') lived for 6 years post-transplant compared to the 44 previous counterparts who only lived for than a few days or weeks.

I am beyond thankful that I live at a time and place where lung transplants are an actual possibility. There have been so many advances in medicine and science in the last 30 years that it is incredible the difference in the level of care one receives today compared to 30 years ago. Not even just for transplants, care has improved for people with CF or diabetes or heart conditions or cancer or pretty much everything.

Thirty years ago, lung transplants were still an experiment that were tried on a few people who were gutsy enough to try a breakthrough procedure. It is hard to say whether or not I would have been able to commit to that kind of procedure 30 years ago. I like having stats with the odds to be in my favor too much to imagine being confident in trying something completely new. At the same time, if I was facing my impending death and had no other choice, I might go for it. If someone offered me a chance to 3D print myself new lungs today, I would be all over that in a heartbeat.

It makes me wonder what incredible technology and medicine they will have 30 years from now. Obviously they should have perfected 3D organ printing that they will be able to print new organs (They have successfully printed a kidney). But will gene therapy be advanced to the point where it can eliminate the symptoms of CF? Will people with CF even need lung transplants anymore? Or will they have some new technology that I can't even fathom?

I have moments where I wish that science could hurry up and make their discoveries faster so I can take advantage of them while I have the chance. Then I feel bad for having a pity part because I'm sure the 44 people before 'patient 45' felt the same way or much worse. I can't complain when the first month post-transplant survival rate has gone from 50% in the 90's to 95% today. That is pretty damn good when you consider how hard it is to transplant lungs. We hear about transplants so much now that we barely think about how amazing it is that we have the capability to take the incredibly fragile delicate lungs out of one person and put them in the body of a second person and have that person live for many years afterwards. Science is awesome.

So Happy 30th Anniversary lung transplants!


Here is the CBC article about Patient 45.
Read more about the history of the lung transplant