Happy long weekend!

I hope everyone is having/had a safe and fun long weekend! I heard the commerical again on the radio from the blood bank asking everyone to donate blood for the car accidents that will be happening this weekend. So a reminder to everyone who donates blood and plasma, to donate this week! People need your help!

We've been having a low-key weekend so far. There is an airshow happening close to our apartment which we've been hearing for the past two days. The planes sometimes come within view of the window but are mostly on the other side of the building. I would have been outside to watch them if it wasn't so damn humid outside. I spent a total of 2 minutes outside today, walking from the car to the grocery store and I though that I would melt into a puddle. I'm glad it hasn't been like this all summer. I was not thankful that the past winter was the coldest in a long time, but I am very thankful that this summer was also one of the coolest in a long time. Nothing wrong with a high of 24.

Happy Labour Day everyone!

Pottery course #2 recap.

My second pottery course ended last night. Booooo. I was hoping I would hit a magical time loop where the class would just never end. After 16 classes (in two courses), I still love it. I think one of the reasons I love it so much is because I get to make stuff that is semi-pratical which appeals to my senses in someway.

I can always use mugs and bowls even if they are a bit lopsided. Plus I get to be creative with both the hand-building and the glazing. And if I don't feel super creative one night, I can spend the entire class on the wheel trying to a bowl with even walls and doesn't look like I dropped on the way to the kiln. Some people in class paint fun designs on their pieces (one man drew cool killer whales on all of his pieces) but so far I've found that soild colours have been challenging enough.

I made a lot of Christmas presents this session so as I don't want to ruin surprises, I don't have too much to show. However, there are a few pieces that I already gave away or that I'm planning on keeping as I'm not sure the one tiny goblet or mug would make a good present. I would say though that my techniques have improved over time, the pieces are a bit less wobbly, and I'm slightly more confident with trying new colour combinations when glazing.

One thing that I tried to make that was a huge fail was a french butter dish. I measured everything out and after a few tries, managed to make the inside section of the dish. However, when it came out of the kiln, it turned out that the lip shrank too much so it didn't fit over the bowl part. Argh! Something to try again if I end up taking the fall course.

I called these my circle mugs. They were glazed with old copper and camel and I really like how they turned out.

A tiny goblet I made on the wheel in two parts and then "glued" together. I glazed it with denim blue and ox blood red. I thought it would turn more purple-y but it did not.

I actually made this during a drop in session I went to when my friend Alison was here. It was the first time I successfully made something vase-like on the wheel. It's a bit rough on the bottom which means it most likely won't be a Christmas present but I like it for myself. It's glazed with burnt sugar and dragonfly green.

Inside the vase. I only glazed a bit of the inside with the dragonfly green and let it run down the middle. It made a super cool effect with the burnt sugar that I'm not positive I'll ever be able to repeat.

Another circluar mug with the same colours as the vase. It's fairly small and Mom said it reminded her of a kids cup. I'll have to use it when I only want a small cup of tea.

This is a Christmas present so I don't want to completely ruin the surprise but I really wanted to show the funky texture I made by pressing clay through a garlic press. I glazed it with speckled blue and very light ox blood.

Pics!

For something a bit more cheery than the last post, here are some pictures of the few things I haven't already mentioned that we did with Mom and Dad during their visit.

Went to an outdoor screening of Ghostbusters on their anniversary. The ghostbusters were as romatic as ever.

We went early to get good seats/actual seats, it filled up super fast.

Visited some comptemporary art museums on the waterfront and saw a butterfly.

Spent an afternoon at the BuskerFest.

Watched a contortionist squeeze herself into a small box. I saw her a few years ago at the Halifax buskers but this time she added the challenge of getting a basketball and her body into the box. It looked painful.

And we finished the visit with another sporting event. Blue Jays vs Red Socks. The Red Socks won in the 10th inning.

Obligatory pic of the CN tower from the Skydome (aka Rogers center).

An explanation of how it sometimes feels to have CF.

I spent the evening tonight talking with Amy on the phone about the shittyness of CF. Well, I more listened while she ranted. She had a check up appointment today that didn't go as well as hoped. And there is nothing more discouraging than going into an appointment feeling fine only to be told that your lungs are actually worse despite all your healthy eating, exercising, and never skipping an aerosol mask. It's beyond frustrating. The worst part is when no one can tell you why you’re lungs are crapping out. You wish you had pneumonia because at least then you could point and say ‘that is the reason my lungs are worse.’ Then you feel weird about wishing you had pneumonia.  

The trying so hard and experiencing failure makes everything seem pointless. What’s the point in exercising when it doesn’t seem to be helping your lungs anyway? Why should you spend two hours each day on four aerosol masks when it doesn’t help? That is the thing with having CF, there are never any victories. Never a moment to say "yes, I’ve worked hard and put all my energy into treatment and self-care and now the disease will not bother me again."

It doesn’t happen. There is never a break. It can wear anyone down. You sometimes get angry at people who say ‘hope you get better soon’ (then immediately feel bad because they were just being nice) because you know while you may recover from a certain infection, you will never be able to recover to where you were 5 years or a year ago.

To put it intp the battle terms that everyone loves so much: You never get to beat or fight off the disease. You only experience losses until you have nothing left to lose. You never get a win. You might sometimes gain back some lost ground but it will never last forever. There is never a chance that it will one day it will be defeated and you’ll come out the victor on the other side*.

I'm not sure if people without CF or a debilitating disease would ever have a similar experience. Sure, everyone has disappointment and goals that they fail to accomplish. But have that happen over and over again and it's a bit like having CF. I wish I had a brilliant metaphor but the only thing I can think of is that it’s like standing at the top of a descending escalator, not wanting to go down. So you keep climbing the steps but it's moving too fast for you to make any progress. You try as hard as you can but you never make any gain. And then you try to sprint up it but you can’t keep that speed for very long and then you end up losing ground because you have no more energy. Or you stop for one second and suddenly you're lung function has dropped 10%....okay, maybe I'm bad with metaphors. I think you get the idea.

It just. never. stops.

The feeling of hopelessness can be unbelievably overwhelming. So overwhelming that it's sometimes hard to shake off or crawl out from underneath. It takes time to recover from a decline and there are only so many times you can put on a positive smile in the face of horrible news. You crawl out of it and shake it off, but it’s damn hard sometimes. Eventually you reach a point of acceptance that it’s out of your control. That it will happen despite your best efforts. And while you may not be able to ‘win’, you can sure as hell delay the loss for as long as possible.  

….I think that's the end of my rant. I've probably already posted one like this before but after talking to Amy, I needed to rant again. Because it's hard. If you didn't already realize it, having CF sucks.

 

*I just wanted to add as an aside, that while having a lung transplant may rid my lungs of CF and may seem like I have 'defeated CF', I still have the disease in the rest of my body. Also, transplants are hard and avoiding rejection is it’s own never ending process with little or no reward. Getting a lung transplant is just replacing the inevitable doom of CF to the-just-as-cheery-inevitable doom of organ rejection. It’s not a victory so much as trading one thing that will almost-definitely kill you right now with something that will almost-definitely kill you in the future.

Cooking: Blueberry Peach Quinoa Salad

Last night, we went to see Shakespeare in the Park in High Park. As there is limited seating, we had to go super early to get good seats so we made a picnic supper to enjoy during our wait. Since Mom is never one to just grab a takeout pizza or pre-made salads from the store, we made a delicious quinoa salad.

The perfect meal to go with the bloody murder-fest that is Shakespeare's Titus Andronicus. Spolier: Everyone dies.

Filling: cucumbers, blueberries, peaches, cubed pork, and green onions

2 cups of cooked quinoa (it's the weird red kind that was on sale at Bulk Barn)

Dressing: Olive oil, salt, pepper, lemon juice. Yum!

Mom also whipped up some biscuits. I ate half of them.

The actors warming up.

Despite what was on the ads, there were no raccoons in the play.

Book Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

I just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot and I thought it was interesting enough to warrant a blog book review.  

The synopsis: 

 “Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer…, yet her cells were taken without her knowledge and still live decades after her death…HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.

The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s...Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.”

For non-fiction haters, while the book is non-fiction, it isn’t technical or heavy on the science despite being a science themed. But for the non-fiction lovers, if you hate when authors inject themselves into the story, this book is not for you. It is very much the story of the journalist discovering and telling the story of Henrietta Lacks and family. 

The book isn’t perfect, I would have liked some topics to have been discussed more and I would agree with the critics who say that while she claims to have better intentions than all the other journalists, it may have been that she was just the pushiest or contacted them at the right time when they wanted to tell their story. However, all that aside, it’s a great book. 

Although the entire book is fascinating (it’s not just about Henrietta; it’s also about her family, abuse, education, privacy, mental health and treatment, and racial tensions), I thought the last section about whether we have a right to our cells once they leave our body was the most interesting. 

While doctors now require full consent to take any tissue samples, once the consent is given, we relinquish control of how that tissue is used in the future. Hospitals keep most (if not all) of the samples taken and they can be held for an indefinite amount of time. It may seem pointless but it was helpful in 2009 when tissue samples from people who died in the 1918 flu pandemic were used to aid the development of the H1N1 vaccine. Though it seems that many institutions have started requiring consent for research, there is no law stating that it’s necessary.

And really, most people don’t have a problem with having their tissue used for research but when money gets involved, it can get a little trickier. Right now, if you have a tissue sample taken and it shows that you have cells that are immune to the common cold, which then leads to someone developing a cure for the common cold, which is sold for 10 billion dollars, you’re share of that profit would be zero dollars. The only way to get around that would be to be aware that you have the magical cells that everyone wants and demand your cut of the profits ahead of time (the book discusses one man who did just that). 

Another problem that people have is if the tissue is being used for research you might not ethically support. If you didn’t support vampires, you would not appreciate your blood being used to support research into developing a line of super-human-vampires. 

All the information in the book was US based, but it seems it is no different in Canada. In June this year, a Canadian court ruled “thathuman tissue removed from the body for diagnostic medical tests is personalproperty that belongs to the hospital…” They were basing their ruling on the US court case so unless anyone knows different, I’m going to assume that Canada does not have any better tissue-right laws than the US. 

On the flip side of the argument, researchers need tissue samples to work with and it makes people more comfortable giving samples if they know they’ll be anonymous. Right now when you give a sample, it would take a lot of work for the researcher to be able to figure out the original source. The woman at pottery class who works on CF samples told me she can’t even know the age of person despite the fact that she is doing research on aging and infection for those with CF.

So if you like a good story about a family who was wronged by the medical community, a healthy discussion about medical ethics, along with a heart breaking side-story of the institutionalization of African Americans with mental health conditions in the 50s, this book is for you.

If you want to learn a bit more about Heneritta Lacks but don't want to read the book or even if you did read the book, Radiolab did a segment on the HeLa cells as part of their Famous Tumors episode. The segment is 10 minutes long and well worth you're time.

Smokers and Transplant

Last week at physio, there was a morning that was fairly quiet, and the three other couples on my on my side of the room all bonded over their health woes (there were two newbies and one post-transplant). I had sadly forgotten my headphones so I had no choice but to listen to their conversation to help pass the time. I learned that all of them use to be smokers, how their health declined at a shockingly rapid rate, and that they all felt better before they had to quit smoking (except for the post-transplant person). One of them seemed to imply that smoking withdrawal was the reason they felt so bad instead of their crappy lungs.

I had conflicted feelings listening to the conversation. Part of me wanted to say that they only had themselves to blame for smoking all those years and that they had no right to complain when I was there because of something I have no control over. And how dare they get lungs before me. But then I felt bad for feeling that way because 1) Just because someone has it worse doesn't mean the person doesn't have a right to complain about their problems; 2) I'm sure the people who smoked have already beat themselves up over it and don't need more piling on from strangers; and 3) just because my disease is genetic, doesn't mean that I don't also have some control over my health.

Obviously I didn't yell at anyone but it made me realize how easy it is to blame people for their health problems. It's easy to say that people who smoke who get lung cancer or copd only have themselves to blame. That they should have just not smoked in the first place and they would be fine. But it's never that easy. I have no experience but I imagine that people don't start smoking thinking that one day they hope it ruins their health and leads to a lung transplant. They start because they need a coping mechanism for their stressors and nicotine happens to be the best option. Unfortunately for the people at physio, they were the ones who ended up being susceptible to pulmonary fibrosis or cancer while their friends or family who smoke will live to be 94 with no health problems.

But someone doesn't have to have to smoke or have lung cancer to feel like they are to blame for their health problems. There is part of me that feels like it's my fault for requiring a lung transplant at this point in my life. While I grew up knowing that I would most likely always need a transplant, I feel as though I could have done more to stay healthy. If only I walked more instead of taking the bus. I only I spent my vacations relaxing instead of madly travelling. If only I didn’t stop running or had been more vigilant about doing my second aerosol mask. And on and on. It’s hard to stop.

I've been trying reach some conclusion about why I want to yell at smokers who are on the transplant list with me but I have yet to have an epiphany. Really, it doesn't really matter how we all got to this point, we're all in it together now.

Feeling better

I'm feeling much better. The headaches are now just an occasional thing and the positive effects of the meds have kicked in. I no longer feel like throwing up after exercising and I have resumed my normal intensity on the cardio equipment. Yay medication! 

In other news, my parents are visiting so as you can tell by my non-blogging, I will most likely be lax in updating things this week. We had a fun sports-themed weekend with a soccer and football game.

Fifa Woman's U-20 USA vs North Korea.

Toronto Argos vs BC. Toronto held their own until the last 5 minutes.

Arrrrr Gooooos.

Headaches

The meds have definitely started to kick in bringing with them massive headaches. I thought at first that maybe I was becoming one of those people who got headaches when there was a change in the weather pressure (I was excited to join the club of people being able to predict when it will rain). However, since it’s been happening for three days, it’s probably not fair to continue to blame the weather.

Amy did a quick Internet search which of course said that it means I’m about to have a stroke at any second (at least it’s not cancer). I called the pharmacist who basically told me that it’s quite common in the first week of antibiotics, that the benefits of getting rid of the infection are greater than the costs of the side-effects, and to take some Advil, but not all the time.

Headaches aren't part of my usual medication side effects (it's usually digestive) and I must say, it’s quite unpleasant. I totally understand why people with migraines just want to hide in a quiet dark room. It was most displeasing when there was a day camp of screaming children on the bus ride home from physio. Urg children and their happiness and their taking all the seats.

Kayak Pic

I took a break from reading this week and finally finished my kayak picture that I had started over a month ago. I had it all drawn out and coloured but never took the time to paint it in for some reason.

It's Dad kayaking down the Petty river in the Spring, based on a picture. I eliminated a lot of the background trees in the picture as they were all grey and I don't have a grey water colour pencil. I've tried using the black lightly and it works okay if it's splotchy but I wasn't confident how it would work trees. I guess that is the limitation of the watercolour pencils.

Back on antibiotics

Well, after another day of doing very little, I decided that I need to should start the antibiotics. I ended up skipping physio this morning as I woke up at every noise last night thinking that someone was coming to kill us. Reading a murder mystery before going to sleep was apparently a bad idea.

I was super tired when my alarm went off so I thought if I slept for a few more hours, than I would feel good enough to exercise in the afternoon. Unfortunately, all the afternoon physio times were booked so I was unable to go. The physiotherapist suggested that I use the gym here in the condo building but after getting short of breath cleaning the bathroom, I decided lying on the couch was the better option. It's been a week since my hospital appointment and I despite all the sleep and tea, I haven't managed to feel much better.

So back on antibiotics for me. Boo. 

Weekend

I'm still here, I've been slack in blogging as I had a bunch of library books to read. I ended up quitting on one of them. While it was beautifully written, I couldn’t get into the story (talking about you Luminaries). I never use to quit books but now I figure there is no point in forcing myself to finish a book that I'm only reading because I feel like I should. I did enough of that in school. Life is too short for boring books.

All in all, it was a relaxing weekend and I'm still trying to figure out if I am indeed sick. Ever since my St. Mikes appointment, I've been trying to decide if I really have an infection or if I'm just tired. I haven't reached a conclusion. I didn't have physio today due to a scheduling conflict or so tomorrow will be my real test as to how my sats hold up while exercising.

I haven't been a complete bum this weekend, on Sat, Isaiah and I went to the Danforth Street Festival (bascially a Greek Fest) and walked around for awhile until we (mostly me) were both hot and tired. It was fine but there are only so many souvlaki stands that a person needs. They did have a trailer set up like the Leafs dressing room which was pretty cool. However, less cool was the man who walked in with a giant parrot on his shoulder. I'm not ashamed to say the parrot terrified me  so I took that as my cue to leave and join the giant line for free samples of hummus.

Danforth!

Leafs jerseys!