Kia Kaha, my planet

It means “stand strong”. I’m healthy, and dear universe, I hope you are all healthy too. I’m an essential worker so I’m still heading into the office every day although I’ve been seconded from my usual work to do governmental COVID-19 response stuff. What a fucking month, huh? We will get through this to the other side, however changed that may look from our previous normal. *giant contact-less hugs*

Those are good odds

lotto
Photo by dylan nolte on Unsplash

So, SARS-CoV-2 arrived in NZ yesterday, courtesy of a 60-year old NZ citizen who flew home from Iran via Bali. Apparently, some of my fellow Kiwis have lost their collective minds, with media reporting three-hour supermarket queues, bare shelves, and panic buying of tinned food and water. An Auckland Pak ‘n’ Save shopper helpfully commented, “I feel like I’m in a zombie apocalypse.

I am proud to report there are no apocalyptic queues for hand sanitizer and tissues in Palmy. Instead, we’re apocalyptically queueing for Lotto, which tonight reaches NZ$50 million (just over $30 million USD) aka what Jeff Bezos earns in 3.5 hours.

In NZ $50 million is the largest jackpot the prize pool is allowed to reach. This means it will go tonight to whoever has the closest numbers, which will probably end up being about 12 people splitting the pool.*

The prize cap – part of Lotto NZ’s social responsibility policy –  is so indomitably New Zealand. When Kiwis look at lotto draws from the  United States of $350,000,000  (which is not even that big) apparently we say to ourselves, “Nah, not for us, thanks.” When people like Trevor Cooper win $37 million social media comments are full of, “No one needs that much money.” Our national motto should not be ‘Onward’. It should be ‘You’re Not Special’.

Still, I am not complaining! I shall be benevolent with my 50 million. Odds of me catching SARS-CoV-2? Well, it has an estimated Ro of 2.8, so . . . too slim to count.  Odds of me winning Lotto tonight? 1 in 38,000,000. Comparatively, that’s a sure thing. Hell yes, I have a ticket!

 

 

*At least in NZ you don’t have to pay taxes on your win!

 

Hi

My blog has been basically on hiatus for over a year.

In January 2018 I found a lump in my breast. It was large enough to be pushing out against my bicep and I was a cup size larger on my right side. That lump turned out to be a big, aggressive tumor and I was diagnosed with de novo stage 4 breast cancer. De novo means when I was first diagnosed I was already stage 4.

Stage 4 cannot be cured, but it can be treated.

I have metastases (secondary tumors) in my liver and lungs. I spent 2018 doing chemotherapy and radiation therapy, and I had a double mastectomy without reconstruction.

This sounds bad but I have been incredibly lucky.  I’m under 50, which gives me a slightly longer life expectancy than if I were over 50. I’m healthy, overall. My blood pressure was down to normal before my diagnosis. (I shall now disclose to you that when I was still working at the university it was 180/126. I was about to have a stroke. I’m so glad I don’t work there anymore.)

And I’m even luckier to have had people to walk with me all through the last year. I couldn’t have done it without my friends’ support. I owe them everything.

More good fortune: because I wasn’t able to work for 10 months, if I’d still been in Auckland, I wouldn’t have been able to make my mortgage payments and I would have lost my condo to foreclosure, or, best case scenario, lost a shit-ton of money from an urgent sale. Because I moved to my small town three months before diagnosis, I had no mortgage, and although to clear my debts I have now had to take a loan out against the house, I still have a house. Isn’t that the damndest timing? Thank you, universe!

In December 2018 I was well enough to start full-time work again. I am incredibly fortunate to have found a safe, secure Day Job with 15 sick days a year, four weeks’ annual leave, and if a medical appointment is under 2 hours duration I don’t even need to lodge a request for time off.

Working full time is an ongoing struggle, I won’t lie. My medication causes fatigue and joint/bone pain. Some days are tough, but the pain is a blessing because I’m still here to feel it.

Much more important than my Day Job is writing down the stories in my head before I’m gone. This is my focus right now.

Overall, I am awesome. My metastases responded well to chemo. I’m on tamoxifen, which is like weed mat for tumors, and it’s working for me.  My last three blood tests show my key tumor marker – CA15-3 – is down in the totally normal range i.e. the cancer is beaten back for the present. Aside from tamoxifen, I’m done with treatment (for now). I look forward to a future of regular blood tests and CT scans, and at some point the cancer will come back, but then we’ll try a different drug, and then a different one, and then another, and by that time, with luck, I’ll have a bunch more options currently in development, like immunotherapy.

So how long have I got? There’s no way to tell.

The average life expectancy following a stage 4 diagnosis in New Zealand is 16 months. Isn’t that shocking? That figure is skewed by the lack of timely, accessible, and culturally appropriate primary health care for Maori and Pasifika women, leading to late diagnosis and therefore fewer treatment options. I have huge privilege, and I will live longer than 16 months.

Going by US figures, median survival for my age group is 39.2 months, which statistically gives me until mid-2021. The five-year survival rate – i.e. till 2023 – is 36%, which isn’t negligible. There’s definitely a good chance I will make that.

Statistics never tell the whole story. Survival rates necessarily come from people who were diagnosed in the past, and cancer treatments get better every year. The 5-year survival rate doubled between 1992 and 2012, so the longer I live, the better the chance I can see the development of more effective treatments.

The 10-year survival rate is 14.9%.

I choose to live as if that’s not true. I choose to live as if I have 35 more years. 2054. C’mon, universe, let’s take that ride. I have a total solar eclipse to see.

I will blog about cancer stuff from time to time. Not all the time, but definitely sometimes. If this is triggering for you, you might want to stop following my blog. I’ll miss you. There will be blood tests. There will be CT scans. There will definitely be more chemo in the future: hopefully many, many years from now, but I have no control over that timing. And I’m going to want to talk about all this. I’m more keen on talking about notebooks, and planners, and climate change, and science, and the cat who adopted me while I was laid up on the sofa recovering from surgery (I can’t wait to tell you about him). But the cancer will always be lurking in the shadows. That’s what it does.

Fuck cancer. I have sunlight to bask in, words to carve, and a cat to pet. The world is gorgeous and I’m so glad to be in it today.

 

Emperor Gum Moth

I’ve been waiting to see one of these guys since I was seven years old and my classmate brought one of the caterpillars to school for show and tell. I could never even find a caterpillar. It’s an Emperor Gum moth, introduced to New Zealand from Australia in 1939. The adults live for only two weeks, without feeding, just to mate and lay eggs.

I nearly missed him, even though his wingspan was nearly the length of my outstretched hand. He was lurking on a footpath at the base of a wall. I was there again the next day but he was gone.

This is an amazing planet. I’m so happy to live on it.

Thanks, Universe.

moth 2moth 1

The ‘Tab Snooze’ Chrome extension makes my life better

Hi, my name is Em and I have a browser tab problem. If I don’t watch myself like a hawk I can have 20 or 30 of those suckers open at any one time. This is a bad thing. And my daughter laughs at me.

When I’m warming up for the day, or unwinding, I jump on Feedly and Reddit and Tumblr to explore the day’s latest in science and octopuses and climate change, and planner and books and Ao3, and and the next thing I know my Mac is wheezing and panting like I asked it to climb Ben Nevis. This presents a problem for my ADHD brain, because once I have all the websites open I can’t decide how to categorize them. Do I want to keep the whole page as reference in my Evernote exobrain? Do I want to record a future date to take action? Do I need to read that fic now, or should it wait? Do I want to forward that info to someone? And so I sit, paralyzed, not working. Not doing anything.

Tab Snooze solves this problem for me. I simply snooze a tab and voila, it vanishes, to be recalled tonight, or tomorrow, in the weekend, next month, or, indeed, any time I tell it to come back. And when it’s recalled, the delay has allowed me to now know what I want to do with it. A lot of the time I want to just close it and move on, but in the original moment I felt too stuck to make that decision. Tab Snooze lets me take action.

Such a simple thing, but wow, this makes my life better.

If information overload is also a problem for you, Tab Snooze for Chrome is free, and you can download it here.

Ticks

Related to my Morgellons interest, Aeon has a fabulous in-depth piece by Mary Beth Pfeiffer on the increasing impact of ticks and tick-borne illness in the crest of climate change.

Apparently, this is an excerpt from Pfeiffer’s book Lyme: The First Epidemic of Climate Change which comes out later this month. There’s no Kindle edition listed presently: I hope the publisher adds one so I can check it out.

Trailer for upcoming documentary on drones

What techniques do you think we’ll develop to keep drones out of stadiums and other pricey sports events? Will there be bootleg Olympics broadcasters the way there used to be pirate radio stations? How do you run security checkpoints when you can simultaneously fly hundreds of twenty-dollar drones carrying dirty bomb material over the walls at an infinite number of weak points?