Sometimes I take a shower, shampoo my head and style my hair. It looks something like this . . .
Then I go out into the Canadian Winter with my hat on, OR I take a nap OR I do anything except sit still as a mannequin, and it becomes something like this…
The next day, Mom and I go for a cup of tea. I’m too tired for a shower and assume my appearance is fine. But my hair is sneaky and does something like this…
The next day, I’m off to another tea shop (because that’s basically all I can manage lately) and forget to look in the mirror at all, having just woken from yet another nap and needing to rush myself back to the land of the awake. But then I go to the ladies room at the cafe.
Upon looking in the mirror I realize I look something like this:
Then, after a while, this…
Because what can you do? At least it is hair. And hey, at least I’m out of the house.
That’s the end of my story.
Time for a nap.
P.S. That sweater is wool, you would wear it every day too if you felt as cold as I get!
It’s the day I went into the office for a small gathering of friends to celebrate my time having worked together at Amnesty International. It’s also the day I get to finally start my new treatment approach.
And it’s very bright outside today, which makes it all the better.
Let me start with Amnesty. I do not write about work on this blog too often. I feel it’s something beyond the personal – and would be unprofessional to write about it in this space. But I can write about how lovely it is to belong somewhere, and I have really felt like I belonged in my role this past 1.5 years, and with this amazing organization. Truly it has changed who I am, how I see the world, and my knowledge in what kind of change people working together- grassroots upwards – can make.
But today was about the cheese and tea. Having finished work last week (I made the decision to leave my role as book club coordinator after Dr Canada gave Zsolt that ‘expect the worst’ talk, and things wrapped up last week.)… having finished work last week, some friends at the organization threw me a little tea party this week. I just had to show up and enjoy! There was tea (we tried some plum, some cinnamon, and a hibiscus) and variety of cheeses, as well as crackers and gluten free baked goods from the market, plus most importantly: Good Company.
Sitting around chatting reminds me that it’s just essential to connect. Social media and such is fine and well, but a nice table with some china and chatter – it’s the essential stuff. It’s where the calm and laughter really live. It’s where you realize how much you have in common, and how much you have to learn. I hope as time moves forward, I can continue to seek out meaningful moments like the ladies gave me today.
Today is also a special day because of the new treatment. Oh, stage four and treatments – one comes after the other until the doctor says ‘that’s it!’ and it’s a very hard situation. But sometimes moments of hope appear, and whatever kind of opportunity they offer – another month, another year, another study, another approach – they are meaningful.
With the cancer all over my lungs, liver, bones and in my brain, the picture is not pretty. But at least today I’ve been able to start a new treatment course. The radiation has zapped the spots in my brain, and maybe this medication will help kill any bits remaining in there. If so, maybe then I can get onto a clinical trial and attempt a different approach for battling back the disease. Fingers crossed for a virus study.
But we’ve had to wait about 3 months before I could get this medicine. It’s called Tykerb, and it’s a HER2 drug that apparently can cross the blood brain barrier, whereas other approaches cannot. It’s also about 5000$/month if you are not covered by the province or insurance. Guess who isn’t covered?
However, through a series of fortunate events, persistence and compassion it has become accessible to me. I won’t give details because it’s not my place to do so. But we get to try it, and that is so very good. Like I say, who knows whether it will work, and even if it does, who knows how long it will last – with me, things seem to move on quickly from working to not working, but it’s nevertheless a gift of hope. I get to try.
I get to try. And that matters very much.
I’m also back on chemo. This time it is a pill. This is fine, it’s part of the treatment. Though it’s also a bit hard to swallow in that …I already weigh nothing. My energy is so depleted. My appetite was never great. Ahhhh.
But who knows? Maybe it will help push back the cancer in my lungs, so I can breath better. And maybe it will reduce the discomfort of the bones. And maybe I’ll be able to rebuild some muscle mass? All these things would be lovely.
In the meanwhile, I had a fun conversation today with the ladies at work about movies that impacted our lives. Some that came up: Garden State (my movie choice), Amelie, Reality Bites, Bridget Jones, Dirty Dancing and more. And in that vein, here is one more: Beauty and the Beast. One of the first characters that I really, really wanted to identify with. Headstrong, smart, beautiful, adventurous, and a reader! Disney is redoing the film with Emma Watson. Here is the trailer. Tingles!
P.S. I am writing a lot lately. It’s a coping mechanism. I hope I am not overwhelming your news feed or email. Feel most welcome to ignore me. 🙂
P.P.S. Did anyone catch that emergency debate on the USA’s decision regarding refugee travel and how Canada should respond? Very insightful, I thought….very interesting how each MP approached the issue. Much of it disappointing (self-congratulations of a country, avoidance of issue through excessive storytelling, platform pushing), but some of it quite good (acknowledging Canada has failed to support refugees in the past, pushing for some form of commitment on how we can help now, direct language and direct responses, etc.)
P.P.P.S I’ve got nothing to add here – just didn’t want to end on politics.
This week was a good week. It’s nice to have them occasionally. I honestly didn’t expect it would be all that wonderful. But it was pretty chill, and productive, and somehow visiting with my radiation doctor made me feel less dismal and more . . . just . . . steady.
Here is what happened. It’s almost so unremarkable that you really needn’t read another word in this post. But I feel like writing it out, so there you go.
This week I saw Margaret Atwood for the second time in my life. I’m editing/recording a mini podcast feature for the Ottawa International Writers Festival and Foment Literary Magazine. It’s a nice thing that gets me out of the house on the rare evening, and lets me talk about events with other literary loving minds. Margaret Atwood wore skeleton gloves for the event, which she picked up at a gas station. Throughout the evening I know everyone in the audience was wondering why she wore those gloves. And I know this because during the Q&A at the end, someone ask her why and everyone clapped. Then when she explained it was a spooky season and she bought them at a gas station, everyone clapped again. Two rounds of applause for the skeleton gloves. And Margaret Atwood. And her new book Hag-Seed, which sounds really entertaining.
Also this week, we have had a bunch of pumpkins populating our home. Tomorrow I’m hosting a small gathering of family and a few friends, and we are carving these pumpkins up. This is really an overly elaborate plan to make other people carve pumpkins so I can enjoy the benefits of roasting pumpkin seeds later. Mmmm, I adore salted roasted pumpkin seeds.
Furthermore, I made a rather excellent cheesecake.
As well! It’s always a satisfying week when I’m able to make progress at work. It seems to me there is always another big project that needs attention. In general, it feels like having this massive piece of ice I’m meant to turn into some lovely sculpture. But the only way to accomplish this gleaming sculpture is to slowly scrape and scrape at the ice till it finally takes forms. The scraping is emails, phone calls, writing texts, experimenting with ideas, sending newsletters and such. And in the in, you get something wonderful. This week, I could move that sculpture along. But next week, of course, there will always be more to do. This is okay. It helps me. By the by, the Amnesty International Book Club is having a Readers Choice vote – go vote! It closes on the 31st.
Counter that above point: this week I worked mostly from home. I just could not handle it otherwise. Firstly, it’s a post-chemo week. Secondly, I received shitty news about my treatment last week, which got me down down down – and so incubating myself, in a way, helped me cope with all the ice chips I needed to scrape off not only my work sculpture, but my life-in-general sculpture too. And I could cry whenever I wanted. Plus stop to take naps. And watch the end of Star Trek Voyager.
Next: My art class was attended by only two people this past Wednesday. While that sucks for our lovely instructor, it wasn’t at all bad for me. It was useful to have a little extra input into my impossible-flower-painting-that-is-driving-me-crazy. Oil paint is an interesting medium, but my goodness does it require patience. Patience is not my strongest point. And so, I am reminded to slow down in life.
We cleaned. This is why you invite people over, in additional to harvesting their pumpkin seeds. It forces one to finally clean one’s apartment.
We had sushi. That was fun – it’s this roll-it-yourself sushi that Zsolt and I really enjoy. After finally finding sushi rice at Bulk Barn, we ate our hand-rolled sandwich style sushi. It made us both quite happy.
So you can see, it was an unremarkable week that was nevertheless good.
Last week was terrible. Apparently while other areas in my body are stable’ish’ in regards to the cancer, my liver spots just keep on growing. Fuck buckets. This terrible disease is terrible. However, there are areas in my body that seem mostly stable, and that is good. Dr Canada is working to see what alternative treatments he can find me. I hate cancer. And this is a shitty way to end this happy blog post.
Therefore I will add this! I booked a ticket to go on a trip. I’m excited. Extra excited because I’ll be traveling with my Dad, and we haven’t done anything like this together ever. Not that I can remember, anyhow. It’s gonna be one long plane ride of him saying crazy things, and me taking the bait every time. FUN!