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?

Depression Strikes Back

Depression has been kicking my ass for the last eight weeks.

A major contributing factor is my doctor reduced my meds. I was pretty shocked. I’ve been on them since 2001, and there’d been no discussion about this being a possibility. I asked why. She replied, “Well, you’re not as fat anymore.”

Since I lost my job in 2016, I lost weight. Partly because I can’t afford snack food, but mostly because I’m not commuting three hours a day, leaving the house at 5.45am, mainlining caramel lattes all day to keep me going, and falling exhausted onto my couch at 8pm with barely the will to inhale a pizza before I collapse into bed (spoiler: I still inhaled the pizza. The whole pizza).

For clarification, my doctor didn’t mean a weight/dosage thing. No, according to my doctor, because I’m not as fat now, I don’t have reason to be as depressed.

The consultation was the day before I moved. I didn’t have the spoons to argue with her, or express how outraged I was she assumes depressed people are depressed because they’re fat. I figured I’d give it a go. Although, I stopped my meds back in 2015? 2014? and things went very, very badly.

Sure enough, things have not gone well this time either. I started a reduced dose in early November, and spent the rest of 2017 slowly spiraling down into the delightful & familiar state where I only want to lie in bed all day, without even the strength to try to sleep.

The other contributing factor has been the reality of how much worse my mom is – and how much worse she is getting – between her brain tumor and her MS.

I feel guilty at leaving my grandmother in Auckland. And I feel pissed off at my cousins and aunt for implying through their shocked silence I’m a neglectful granddaughter and should have moved her down here to a facility close to me. You’re supposed to know the limits to your own capacity, though, right? And dealing with my mom now is going to be all I can manage.

I struggle with the knee-jerk reaction that because my mom can’t go out without me, I shouldn’t go out without her. It seems utterly unfair. How can I expect her to watch me happily heading off to experience the outside world, when she cannot?

Because of this, I screwed up.

I signed up to a beginners yoga class starting last week because I wanted to make new friends in this city. But then I felt like a piece of shit because I was going to get to go and meet humans and move my body. And I crumbled under the guilt and screwed up and asked if she wanted to go with me. And she eagerly jumped at the suggestion.

This was a terrible idea because she can’t do yoga. She can’t remember a sequence of instructions, she has terrible body-awareness, and she can’t walk unaided. I felt overwhelmed at the thought of trying to manage her environment for her – to manage her –  so she could participate.

But rather than address these issues with her, instead, when the class came around I said I felt sick, and I bailed on something I’d been looking forward to going to.

I know it sucks for my mom, to be trapped without being able to drive, to have language recede from her grasp like a racing ebb tide, to find the world more bewildering each day. But do I have to be trapped by MS, because she is?

It’s like a plane crash, right? Look after yourself, before you look after anyone else. Put my own oxygen mask on first. And if I look after myself first – which means acknowledging I have the right to have a life outside this house – then I will have more energy to look after her.

I need to sit down and work out three things a week my mom and I can do together. Like, a simple exercise class, a visit to a gallery or small township, and a movie. That seems pretty good. And reasonable. And when NZ life kicks back into normality in February there will be MS Society activities she can join, to which I will drive her.

I’m trying to remind myself I cannot be everything for my mom, even when I am trying as hard as I can. That I’m not wrong or selfish for wanting to create my own activities outside of her life.

I’m also rereading The Art of Taking Action: Lessons from Japanese Psychology.

This book helps me. Gregg Krech shares the concept of arugamama. Right now I feel depressed and sad, and I accept that. I don’t wish I felt otherwise. I do not try to escape my experience of feeling depressed and sad. I adopt a state of non-resistance. I feel how I feel, but continue to devote myself to what it is important to me to do: my life’s purpose. I invite depression to accompany me as I write.

Action isn’t something that will come after getting over my depression. Action is a way of getting over my depression.

So, I’m depressed. And I’m practicing non-resistance. And I’m writing. And trying to get un-enmeshed from my mom. And most importantly, I’m going back on my full dose of meds.

 

2018 Challenges

My friend Kate and I are doing an exciting 2018 challenge: using up all our journals and pens. And not buying any new ones. This is going to be tough for me, but the gods know I own enough to get through. So in a year’s time I’ll be posting a pic of my empties and a stack of my filled notebooks. Join us!

My friend Katie also challenged me to not read any books about writing this year. This I’m not sure I can do, mainly because I own a hell of a lot that I haven’t read yet and I’m excited to try, like Linda Barry’s Syllabus. Or Views From the Loft. Or Words Overflown By Stars. But I’m going to stay away from all the generic titles promising to teach me how to Write Your Best Seller Without Getting Out Of Bed, of which I have inhaled far too many in the last 36 months. And I can definitely not buy any writing books this year. And I’m absolutely not reading ANY time management, anti-procrastination, motivation, or self-management books this year.

And yes, after failing yet again to do the 2017 Pop Sugar Reading Challenge (because reasons), I’m trying the 2018 reading challenge. I can do it this time!

But most importantly, my focus for 2018 is writing and releasing books. That’s it. That’s all that matters.