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.

 

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.

The Mighty Manawatu

I’ve been in my new home for five weeks. I’m in love: with the house, with this city, with my garden.  I miss the ocean, but the beach is a 30 minute drive away, even though it’s the fierce, cold Tasman Sea, not my familiar Pacific.

Instead I get to walk beside the mighty Manwatu River. I found a great riverside trail, and if I walk to the Fitzherbert Bridge then back along the streets it’s a nice, even five miles.

Admittedly it doesn’t look so mighty right now.

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They had floods here in July, but now we’ve had no rain to speak of in months, although it’s not an official drought, because that would give farmers some government relief the government is clearly reluctant to offer.

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Schools just let out for the summer break, and it’s 82F every day. In the afternoons I nap on a quilt, in the shade of the ornamental cherry tree, where the breeze keeps the heat down, while the starlings and wax-eyes flutter overhead.

I’m treasuring how calm and peaceful things are here.

In August last year my mom was asked to take medical leave from her work. On 31 December 2016 we found out my mom had a brain tumor, and because of the brain damage caused by her MS they won’t operate. She had to take retirement. We spent the year traveling all over the country looking for our new home, while we also waited for the condo to sell.

Thank you, universe, from the bottom of my heart, for sending me a buyer. Thank you, universe, for guiding me to this new house.

My mom had to give up driving, and I’ve watched as her memory and language skills decline weekly. My grandmother fell and broke her hip, and needed hospitalization, and I went to the United States anyway, because getting away to travel isn’t going to be so possible in the future.

I only published one book, and I forgive myself, because I didn’t just survive 2017, I sold a house, bought a house, moved to a different city, and most importantly, met treasured friends in the flesh. I fulfilled a dream I’ve had since I was six years old, and went to Disneyland.

I’m joyful, and revived, and eager to greet 2018.

 

Mistakes I made so you don’t have to

OK, so, my first mistake was not the decision to go back to my Air BnB and rest up before the GRL evening program. That was an entirely logical and sound decision involving wise and judicious boundary-setting.

No, my first mistake was, having gone home, deciding that to relax I would eat – alone – a single-serve pot cookie, recommended by the dispensary as a gentle option for newbies who haven’t touched marijuana since 1991.

My second mistake was thinking, only an hour later, the cookie wasn’t working.

My third mistake was eating the single-serve THC chocolate.

My fourth mistake, and this, I think, was the critical one, was the brainstorm that – having ingested multiple THC-laden products – what would really relax me was a two-mile walk around a strange city. Again, alone.

The gravity of my compounding errors appeared one mile out when the time dilation set in. I’m not sure if the paranoia or the deja vu came next: both came before sensory distortions.

It took either five minutes, or around eight Martian years, to go from walking on a pavement beside a busy road, to traversing a black-sand beach atop ragged white cliffs, at the bottom of which ran a buzzing ribbon of expressway traffic. By the time I was 0.8 miles from home the small part of my brain that was not currently walking in an alternative reality – yellow, in the key of peppermint, and flavored with disquiet – remembered there’s a bloody good reason why I didn’t smoke pot for the last 26 years. Being utterly unable to restrain my mind from wandering really freaks me the fuck out.

Having floated home I curled up helplessly on the bed as my synapses buggered off to the playground beyond objective reality.

For five hours.

It was not fun.

The takeaway: when in Denver, imbibe with friends, single-serve means single serve, park yourself somewhere safe, and skip the aerobic exercise.

Oh, and I have two pot cookies available.

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Did you know I wrote manties?

M. Caspian stories are kind of dark. And no one wants to read, or write, dark 100% of the time. So one of my other pen names is A.L. Anderson. I have two books out under this name right now, but I have more planned for next year. These are traditional sugary sweet m/m romances with HEAs all round, and absolutely no one gets eaten alive by ants.

Grosgrain & Taffeta features manties and corsets. Originally it was going to be a series, and it still might, but I have a shit-ton of other stuff to finish first.

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Cats Have Staff is a short lunch-break read, with—to state the obvious—a cat.

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Going forward I’m going to link books by both author names on separate pages on this blog.

The last thirteen months have been really good for me, personally. Not having a full-time day job has definite down sides—like the lack of money—but I’ve been able to stop feeling like a fractured person. I’ve had a lot of family stress to cope with, but even so, I’m visibly healthier, and happier, and my blood pressure stopped completely freaking my doctor out. Moving to my new house in November will continue this journey into a whole life: simpler, and cheaper, but more meaningful and authentic. And as part of this I don’t want to fracture my writing self anymore either. Sometimes I want to write dark, and sometimes I just want the cute boy to end up with the other cute boy. They’re both me. Maybe you’ll like these books too.

 

 

 

 

Wish me luck

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Pasture against snow: The Tararua range from the Wairarapa, by Virginia McMillan via Wikimedia, used under a Creative Commons Licence

I’m supposed to be flying south tomorrow to look at some houses. And I say “supposed to be” because this has been the news headline all day:

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Also:

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The strongest winter storm in years has just blown in. I’m going to the North island, not the South island, but snow is anticipated as far north as the Tararuas. Spoiler: exactly where I’m headed.

So I could be waiting at the airport all day, or heading back home before I’ve even started. I’m packing paperbacks so I don’t have to worry about a depleting battery. Cross your fingers for me.

The insidious nature of clutter

In my head I’m pretty good at managing clutter. When my grandfather died I had to clear out a lifetime of his belongings, including heavy suitcases of grade school exercise books dating back to 1926. So yeah, compared to my grandfather I am good at managing clutter.

But now I have had to clear the house in order to sell it I have to face I do not have my shit together.

I received a Lamy LX pen for Xmas. It came in a lovely presentation case. I still have the case in the top drawer of my desk. I do not store my pen in the case. The pen lives on my desk and I use it every day. The case is the very definition of redundant.

 

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Everyone has one of these drawers, right? Right?

Why do I still have it? For some sense of completeness? A fear I will one day want it and find it absent? Why do I have six large rolls of double-sided tape? Why do I own four laptop bags, none of which I use? Why have I saved old planners? Who do I think I will be accused of murdering five years ago, and so will be required to accurately describe my activities and whereabouts on June 14, 2012? I’m hoarding post-it notes like I’m afraid 3M will not only go out of business, but take the technology with them.

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I have packed three cartons of blank journals ready to go to the storage unit that’s costing me $179 a month. There is no shortage of blank journals in the world.

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Important note: I haven’t sewn anything in three years.

Some of it is perfectionism. I’ve told myself I need 15 shades of red sewing thread because if I sewed a garment with the incorrect shade of red then I’d be a pitiable loser who should die in a fire.

But more of it is I’m clinging to a scarcity mindset, rooted in a deep-seated childhood fear of not having something I would be required to produce. And fear of ignorance: of not knowing what I should have. I felt such anxiety at the thought of having to ask to borrow a pen, protractor, or pair of compasses I always made sure I had multiples of everything I would need. I would never risk the chance of having to talk to someone and be rejected. I didn’t have friends at school, and I’ve put that down to my social awkwardness. But it’s likely it also stemmed from my belief that to need help, support, or, in fact, other people at all, was a symptom of being ill-prepared and weak. I wonder if I might have been so desperate to prove my utter independence I never left room for anyone to offer mutual, supportive interdependence.

I live in a prosperous, happy country. I have enough. I do not need to cling to objects through fear.