Sunday, 26 March 2017

Transplant Trot in one month!

I realized this morning while jogging on the treadmill that the Transplant Trot is in a month! Eeek! My knee is feeling significantly better than last month so I've been able to crosscountry ski and jog on the treadmill once again. I haven't been out downhill skiing but mostly because I'm not a fan of downhill skiing on soft spring snow. It's a lot more work and much harder on the knees.

On the treadmill I'm managing to do 5km in 45 minutes (with many walking breaks). I know that once I have to jog outside, my time will be much worse since the treadmill is much much easier than actual jogging.

I wasn't going to set a time goal for myself and just "have fun" but let's be honest, of course I'll have a goal. I need something to compete for. I'm thinking that 40-45 minutes is a reasonable goal for my 5km. I know that's slower than average time (according to google) but I do not move very fast.
I'm thinking 40 minutes because I have this idea that I'll be much more pumped up and motivated on the day of which should automatically knock a few minutes off my time (because that's how it works, right?).

Anyway, if you want to join me or just cheer me on to see if I can do it (and Isaiah doing the 10km), the run is at the Moncton Press Club on April 29th at 9:30 (run starts at 10). More info here.

Also, if you're doing your taxes and realizing you should've donated more to charity and don't want to make the same mistake next year, everyone in my family is doing the Great Strides Walk to Make CF History in May! We would all love someone to sponsor us! You can do that here if you feel so inclined.

Monday, 20 March 2017

Canadians with CF live longer!

A study came out this week that showed Canadians with CF live on average 10 years longer than Americans with CF, 50.9 years vs 40.6. The researchers think there are three main factors between the countries that cause the difference:

1) Canadian CF doctors were the first to bring in a high-fat, high-protein diet in the 70s that helped children with CF absorb more calories and were therefor not a malnourished.
2) The better Canadian access to health care. Canadian patients are more likely to see their doctor if something is wrong and not have problems getting medication.
3) All Canadians are more likely to get a transplant when needed (probably also related to not having to worry about the cost of treatment or hospitalization), which increases the lifespan of people with CF.

I think the access to health care would make such a big difference. It would be terrifying to be worried anytime I thought something was wrong because I couldn't afford a check-up or x-ray. The cost would prevent many people from not seeking treatment immediately when they had a flare up.

It's a luxury not to have to worry about the cost of a doctor's appointment or a lung transplant (besides the extra expenses of living in Toronto). As a result, I'm more likely to call the doctor anytime I feel something is wrong. Being able to get early treatment makes a huge difference since treating infections early is important with CF.

There is one thing that the people on the facebook lung transplant group I'm part of says that the article got wrong.

The article said the American system of classifying who gets priority for lung transplants is a disadvantage for people with CF. However, the person in the group said that the new system actually helps patients with CF move up on the list since it now looks at how patients progress while listed  instead of how they were when initally listed. If that is the case, Americans with CF should be now getting more lung transplants which would narrow the life expectancy gap between countries.

I know some people on social media were touting the study of Canadians living longer to cheer how great Canada is but I think it shows more how the US health care system is failing Americans who are chronically ill. It's sad that the fluke of where you're born determines how long you live. I mean, it does for everyone with regards to access to clean water, food, and war. But to have such a difference between two developed countries is surprising. Although the US medical system is so different to Canadas that I wonder how life expectancy would compare to a country with a similar or better health care system, like the UK or Sweden.

Sunday, 12 March 2017

Cooking: Peanut Butter and Jam Cookies

Now that the weather has turned cold again we're back to eating soup and drinking tea to stay warm. And with tea comes cookies! 

Today I made one of my favorite cookies (I say that about most cookies), peanut butter and jam! They're like eating a pb&j sandwich but without the bread and with more sugar. Hard to go wrong. It's also a great way to use up all the jam we made last summer and haven't eaten. I'm not sure where we got the idea that we needed 20 bottles of jam for the two of us. Over Christmas I made chocolate jam cookies and they were a bit weird so from now on, I'm sticking with peanut butter.

Recipe from One Smart Cookie.

3/4 c white sugar
3/4 c brown sugar
3/4 c peanut butter
2 egg whites
1/2 c flour
pinch salt
jam (the recipe says 1/4 cup but I use more than that)

Beat together sugar, peanut butter, and egg whites.
When smooth add flour and salt and mix by hand until smooth.
Roll into 1" balls, place 1" apart on cookie sheet, and press a thumbprint into the middle.
Fill the thumbprint with jam, be generous as they really spread when cooked.
Bake at 375 for 12-15 minutes until brown on the edges.
Let them sit on the cookie sheet for a few minutes before transferring to a cooling rack (otherwise they'll break in pieces and then you'll have to eat them all to hide the evidence).

I've used strawberry, apple jelly, and ground cherry jam in the past. It's hard to go wrong but I think apple jelly is my all time favorite so far. Enjoy with a cup of tea or glass of milk!

Yum!
My afternoon chai latte and cookies. Let's just pretend I stopped at three. My poor sugars.

Sunday, 5 March 2017

Book: When Breath Becomes Air

I read Paul Kalanithi's beautiful book this week When Breath Becomes Air. I was hesitant about reading it for a long time because I wasn't sure if I would find it too close to home to read about someone dying from cancer. But a fellow transplantee said I should give it a chance and because it's just a small book, I did.

Kalanithi writes about how his journey to become a neurosurgeon started with him wanting to learn more about death. After finishing a Masters in philosophy he decided the way to understand life and death was to study the brain intimately. He became a top neurosurgeon and when he was diagnosed with stage IV lung cancer, he, remarkably still preformed surgeries until he no longer had the energy. The book is not a descriptive play by play of what it's like to get cancer but more of a reflective journey of what it means to live and die well. He talked about finding meaning and doing things that were important to him in every step of his life and death.

Besides learning about how intense you need to be to become a neurosurgeon, it left me thinking about death. Something I haven't thought about much since ending chemo because it seems when you're healthy, it's not something you think about. Realistically, it's something I haven't had to confront since my transplant. Not to underplay how scary cancer and chemotherapy were but at no time did I have that overwhelming feeling that I might die soon (except during some of the chemo fevers but that only lasted a day or two). While waiting for a lung transplant, it was more prevalent as there was the real fear that if I didn't get a transplant, I would die. Or that I might die during the transplant. And when I went into lung failure right before the transplant, it was very imminent.

Now that I'm healthy, it's just not on my mind as often. This book brought me back to thinking about what it means to have a life well lived. Kalanithi talks about how much more he wanted to do with his life, as a top neurosurgeon who saved a ton of lives. It makes my life of saving zero lives and cutting zero tumours out of anyone's brain seem small in comparison.

I have no answers about what defines a meaningful life but obviously we don't all have to be neurosurgeons to make an impact on the world. I think just trying to leave the world a tiny bit better than when you came into it is a fairly good goal. And to be a positive energy to those you encounter seems like a good start. It doesn't have to be anything grand. 

I would recommend to read the book if you have the chance (your local library probably has a copy!) or listen about it on CBC's White Coat Black Art. 

Sunday, 26 February 2017

No cancer!

I don't have cancer! Woohoo! (I may just start yelling that at people everyday. It's pretty great to not have cancer.)

My appointment on Tuesday with the hematologist was remarkably quick. I saw the doctor at 12:34 (appointment scheduled for 12:30) which has to be some type of record. She asked all the usual, "How have you been feeling?" questions and laughed about my Poopmas story from December. She poked around a bit to make sure I didn't have any lumps, listened to my lungs, and I was sent on my way.

In three months I'll have a CT scan which will show a bit more than the blood work I've been doing. And then the visits will be every four months instead of three! The doctor said during this visit that she would discharge me after 5 years if all stays negative. Before she said she would follow me forever so I'm not sure what changed. Maybe since I'm being followed by other doctors and have semi-frequent scans she's confident they'll pick something up if the cancer returns.

Since returning from Halifax, I've had a low-key week, still trying to stay off my knee. It is getting slowly better, as in, I can now walk on it without pain. Hopefully by the time I'm feeling 100%, they'll be some fresh snow to cross country ski on. The snow we have now is looking quite sad.