Sunday, 20 May 2018

Book: From Here to Eternity: Traveling the World to Find the Good Death.

I just finished reading Caitlin Doughty's latest book, From Here to Eternity: Traveling the World to Find the Good Death. 
The book synopsis:
"Fascinated by our pervasive terror of dead bodies, mortician Caitlin Doughty set out to discover how other cultures care for their dead. In rural Indonesia, she observes a man clean and dress his grandfather’s mummified body. Grandpa’s mummy has lived in the family home for two years, where the family has maintained a warm and respectful relationship. She meets Bolivian natitas (cigarette-smoking, wish-granting human skulls), and introduces us to a Japanese kotsuage, in which relatives use chopsticks to pluck their loved-ones’ bones from cremation ashes."
I read Caitlin's other book, Smoke Gets in Your Eyes, (you may remember me talking about it) and I did enjoy that one but I liked this one more. This book is less about her and more about discovering how other cultures experience death and work through their grief.

It was interesting to read and one of the main themes is that most cultures think other culture's death rituals are "weird" or "disrespectful to the dead." I think we could all benefit from learning about other cultures and discovering that just because a tradition is different from ours, doesn't mean it's disrespectful.

The book isn't a comprehensive look at all cultures around the world, it's much too short for that, but it did make me want to learn more about the places she did talk about. Like the funeral pyre in Colorado and the forensic body lab in North Carolina. A few of these other cultures are in the US, it's more an exploration of what happens when people decide to do something different with their dead bodies then the traditional burial or cremation.

Pick up the book from the library when you're looking for a short non-fiction death book!

Sunday, 13 May 2018

Camp Koru Recap

I survived an adult adventure camp! I was quite nervous at the start of Camp Koru, the surf camp I went to in Maui for young adults who had cancer. I didn't know what to expect. I was worried we would have to play a million stupid ice breaker games and then spend every second not surfing talking about our feelings. I was worried it was going to be like kid summer camp where everyone showed up with friends and breaking into new social groups was so hard.
A gecko I befriended at the hostel the day before camp started.
Thankfully, none of that happened. Because no one knew each other (except for a few people who managed to meet up before the flights but an extra 4 hours on an airplane barely counts), we were all in the same boat of "let's get to know everyone!" And because we knew the other person had cancer and it was all we had in common, it was the third "get to know you" question after "Name?" "Where are you from?" to "Tell me your cancer story." I'm pleased to say that no stupid icebreaker games were played and yet I managed to figure out who everyone was.

I decided on Phoenix as my "power name." It was the only thing that felt right that I could handle being called for a week. It felt pretty cliche and more dramatic than I wanted but I figured I was allowed a little drama after all the times my body has tried to kill me. I was told there has been a few Phoenix's over the years so it was far from original but it got me through the week. And now I'll be known as Phoenix to a group of 20 people for the rest of my life.
Yay made it to cabin #3!
The camp setting itself was what I expected, having been there in January with Isaiah. We stayed 4-5 people in the cabins on cots that squeaked anytime anyone moved in the night. After the second night, I, along with a surprising number of people, took my mattress outside to sleep on the beach where the air circulated better and nothing squeaked when I rolled over. After taking my sleeping pill, I wrapped myself up in my mummy sleep sheet and fell asleep in minutes (I was pleasantly surprised by the lack of bugs in the night). I usually didn't wake up until the birds started squawking over our heads at first light. It was basically breakfast time then anyway (6 am breakfast!) so it worked out pretty well.
Sunrise while sleeping on the beach. I'm on the left wrapped up beside the orange waterbottle.
There were 15 campers, 5 leaders (including the camp doctor and psychotherapist), and one chef who cooked amazing meals three times a day. We had "camp fire" sessions (really just a bunch of lights in the firepit because it was too windy to have a real fire) after dinner which is the only time we had structured "talk about cancer" time. But even then, it was more of a natural discussion than being forced to talk or answer questions.

However, since we had nothing else in common besides cancer, it did tend to come up in conversation quite a bit. I recognize that I was, and am, in a weird spot with having cancer. It was not the most traumatic time of my life and while I had nothing to say when talking about "what cancer gave you?," I did have a lot of the same hospital/medical experiences between my transplant and going through cancer.

It was easy to talk about since no one got traumatized or needed a giant explainer every time someone mentioned a random anecdote about having cancer. Someone would say something like, "random person told me I should spend less time working and more time with my family if I have a shortened life expectancy" and instead of being weird, we would respond with a "those people need to mind their own business." Most of the conversations revolved around encouraging people to live their lives and ignore what other people say. It's shocking how many people have opinions on how you should live once you get cancer.

Four of the five full camp days we spent surfing or paddle-boarding in the morning and then either relaxed (aka snorkelled) in the afternoon or went to Lahaina to shop/walk around. I loved surfing. It was exhausting and I loved it. I went stand up paddle boarding the second day for a bit but enjoyed surfing more so stuck with that the rest of the time. I loved the rush of catching a wave and riding it almost to shore (although then I had to walk/swim all the way back out which was less fun). Many times I crashed into someone or didn't catch the wave in time but that was all part of the learning process.
The surfing beach!
I could make a hundred metaphors about how surfing is like going through cancer or any tough time: how to never give up despite falling over and over. That, like life,  you can only take one wave at a time. Or to choose your waves wisely otherwise you end up falling. That if you take your eyes off where you want to go, you end up falling. And sometimes a jerk kayaker can come from nowhere and take you out despite you doing everything perfectly. And lastly, if you get distracted by the turtle in the water, you'll end up falling (that one doesn't work so well). You get the point. But no one had time to think about that stuff when there were waves to catch!
I'm basically a pro now.
While surfing is basically a solo sport (especially when the instructors stop boosting you for the waves), there was also something immensely bonding about learning how to surf with other people. Sitting and waiting for waves or cheering people on when they caught one, it was all part of the experience. It was so much fun.
Crushed the last day of surfing!
The non-surf day in the middle of camp (day 3) was when we had our Ohana (family) day. We spent the morning pulling invasive pickleweed at the Kealia Pond National Wildlife Refuge as a volunteer project. It was hot, dirty work but ripping out plants was quite satisfying. I unearthed the first live scorpion I've ever seen and a ton of various roaches. The scorpion was super cool, the roaches not so much. 

Afterward, we threw ourselves into the ocean and then went for snacks before eating lunch and watching the expert surfers on the North Shore of Maui. It was mostly small children that day who were surfing due to the "small" waves.

Being dramatic at Ho'opika beach. Yes, those dark storm clouds later exploded on us.
Camp was way better than I had expected. My expectations were fairly low but everyone was so friendly and I feel like I really bonded with people in a way that surprised me. I now have a WhatsApp group of people who I can always call on for support. I learned a lot about various cancers and way too much about the financial horrors of the privatized American medical system. (What a lucky lotto I won being born in Canada where I never had to once consider if it was worth the financial burden of treatments to keep living.)

Short sunset the last night.
I don't have any great revelations that I discovered about myself during the week (although maybe I still need to process it) except that talking to some people about their unsupportive friends reinforced what an amazing network of support I have. I never had a moment where I thought I needed to hide any of what I was experiencing for fear of being rejected in some way.

I've always been extremely open about what I was going through (probably sometimes too much) and in return I only ever got love, comfort, and friendship in response. From people visiting me in Toronto while I waited for my transplant, to sending me facebook support messages, to mysteriously mailing me grocery money, to playing board games on the hospital bed, you've all been beyond supportive during all my medical drama. Thank you!

A bunch of us rented scooters the day after camp. We were clearly a menacing little scooter gang.
If you want to know more about supporting Project Koru, or know of any young adult who would enjoy a week of intense activity post-cancer, here is the website. Highly recommended by me!

Sunday, 29 April 2018

Camp Koru!

I'm in Hawaii! Or on my way to Hawaii after spending a day in Vancouver - depending on when you are reading this. Camp Koru Surf and Stand Up Paddleboard starts tomorrow (Monday). I found out it's at the same camp where Isaiah and I camped in January (small world) so I know what to expect location-wise which was actually quite helpful when packing.

Meeting new people tomorrow! Eeek!!

I'm sure I'll have much to report on what camp is like as an adult when I return.

Sunday, 22 April 2018

National Organ and Tissue Donation Awareness Week

It's National Organ and Tissue Donation Awareness Week! Organ donation has been in the news lately with the Humboldt crash and Logan Boulet's decision to become an organ donor - and the family's decision to honor that wish. One of the few positives to come from the terrible tragedy is that through his and the family's decision, 6 people were given a chance of a better life. Of course it's never just 6 people when you consider their families and loved ones as well.

Also, more people have registered to be organ donors after the news of the bus crash which means even more lives are going to be saved. It's an amazing chain reaction after such a terrible situation.

The chances of becoming an organ donor after you die are still fairly slim. You have to die under just the right circumstances which is why it's so important for those who are able to donate, to do so. In the meantime, while you're still alive, there are things you can do to help.

1) You can register to be a stem cell/bone marrow transplant donor (if you're between 18-35). While it's unlikely you'll ever be called, there is the chance you can save someone's life. A stem cell transplant can help cure someone's cancer. Cure!

I was an inpatient at the bone marrow transplant ward of the VG when they had empty beds and it felt like a first class suite compared to the rest of the cancer floor. The rooms were larger, the nursing ratio was better, the air was specially filtered. It was great to stay in because I wasn't the one needing a bone marrow transplant. The filtered air and better nursing care is important when someone has zero immune system and their body is trying to grow blood cells.

Having my cancer spread into the spinal cord cancer was what my doctor was trying to prevent by injecting me with chemotherapy medication into my spinal fluid. As a result, I spent a lot of time worrying about the cancer spreading and me needing a bone marrow transplant. Thankfully it didn't happen but it easily could have.

2) You can donate blood! I recognize Canadian Blood services doesn't accept everyone but speaking for those who have required a blood transfusion, we really appreciate those who are able.  As someone who has had multiple blood, plasma, and platelet transfusions, I am very thankful to everyone who has donated. It has saved my life.

3) Casually bring up organ donation to your friends, family, and/or co-workers enough times that it no longer seems "terrifying" or "morbid" and they'll be more receptive to being a donor. If no one has ever talked about it, it will be too overwhelming when their loved one dies to make that decision.

Here are a few "fun" organ donation statistics from the Trillium Life Network for you to sprinkle into conversations this week:
  • There have been 49 lung transplants from Jan 1-March 31 this year in Ontario. 
  • As of April 22, 2018, in Ontario, there are currently: 
    •  49 people waiting for a lung transplant; 
    • 39 waiting for a heart transplant; 
    • 1,116 waiting for a kidney transplant; 
    • 226 waiting for a liver; 
    • and 1 person waiting for a small bowel. 
  •  The 2017 registration rate in Ontario was 32%, up one percent from 2016. 
  • While there was a spike in organ donation registration after the Humboldt crash, that number has dropped back to normal so it's important to keep the conversation going.  
And that's my spiel for the week. Donate things!! Harass your friends and family!

This could be your blood saving a person from their own body.

Sunday, 15 April 2018

Two years cancer free!

I had my two year post-cancer hematology appointment on Thursday. The doctor said my bloodwork looked great, then she poked at me to see if she could feel any lumps, and said "see you in 6 months!"

I asked about risk of recurrence at this point and was told it is quite low at this point. I was told I had about a 50% chance of recurrence when I was diagnosed but that has dropped two years out. However, there have been no good long term studies for people with PTLD so she can't say the word "cured."

(With some cancers, it's considered cured if it has not returned in 5 years. Although some doctors still don't like to say "cured" and "cancer" in the same sentence, it is becoming more common.)

Just like there were very few studies to determine survivability rates of PTLD, the recurrence studies into PTLD (to determine the length of time that puts people into the "cured" zone) have not produced very good results. Most of the people tend to die from other non-cancer complications, like rejection or infections, before the end of the 5 years studies.

The sample size of these studies would be fairly small, due to only about 1-10% of the transplant population ever getting PTLD and most people who get PTLD tend to be older kidney or liver transplant patients. When trying to translate that to a young person who had a lung transplant and PTLD, it's hard to draw any conclusions.

I was also told that last year, guidelines came out for the treatment of PTLD. The new recommendations are to have 4 weeks of Rituximab and 4 cycles of R-CHOP. The doctor said I probably would have gotten about 6 cycles of R-CHOP since the cancer was extremely aggressive and because I "handled chemo so well."

I didn't feel as though I handled chemo that well but I guess I don't really have anyone to compare myself to. Two extra cycles of chemo in retrospect wouldn't have changed that much. Well, it would have been two fewer hospital admissions, two fewer "Am I going to die from this"-feeling fevers, and less white-blood-cell-growing pain, so that would have been nice. But now I feel more confident that they got all of the cancer cells with the 8 cycles.

I'm personally concluding that "death by cancer" is now at the bottom of my "how will I probably die" list. Rejection and/or infection has bumped back up to the #1 spot!