Tuesday, October 6, 2020

So...my wife has cancer. Four words I'd never thought I'd have to write.

In October 2016, she was diagnosed with a breast tumour. They quickly removed it, as well as the lymph nodes around it. They did find a small amount of cancer in the lymph nodes but didn't think it had spread beyond that, and they treated her with localised radiation rather than chemotherapy to minimise the side effects. They then declared her a "cancer survivor" and in my mind, that chapter was behind us. Like most people, I thought any cancer detected early enough was survivable.

Exactly three years later, just as the pandemic was circling the world, my wife started having difficulty breathing. She was tested for Covid-19 but it was negative. Her GP gave her an inhaler to see if it relieved the symptoms; it didn't. Finally her GP requested a CT scan, which was scheduled for 30 March. On 26 March, New Zealand went into lockdown and the hospital cancelled all "non-urgent" scans.

Because of her history, oncology were already aware of the situation and they called to say they would try to organise a CT scan through a private hospital. That happened on 31 March and on 1 April they told us her cancer was back. I'd like to say it was an April Fool's prank, but it wasn't.

They said the reason she was having trouble breathing was because there were lesions on the lining around her right lung (the pleural) which were causing the lining to fill with fluid, preventing the lung from expanding. They put a needle in her back and drained the fluid: Normally there is about 10ml of fluid (less than a capful); they drained 1.5 litres.

After a few days, she was able to breathe normally, but it was short-lived and she had the pleurel drained three more times. On the last one, they injected talc which -- for reasons they don't even understand -- tends to turn off the fluid production. Thankfully she hasn't had any issues with her lungs since then.

While that was going on, they also did a biopsy to confirm the cancer was the same type as the original tumour (it was). On 27 April, they scheduled a meeting to tell us what they had confirmed: It was stage 4, meaning it had metastasised (spread) and it was not curable. All they could do was slow the growth to give her more time, but the 5-year survival rate was less than 25%. That is, my wife has a 1-in-4 chance of seeing her 56th birthday.

The cancer was hormone-receptor-positive, HER2-negative breast cancer, which meant they could target it with endocrine (hormone) therapy rather than chemotherapy. The problem with the endocrine therapy is they know it's only effective for a short period; the mean time for letrazole is 15 months. There is another medication, palbociclib, which extends that to about 24 months. New Zealand had only begun financing palbociclib in April of this year; before that it would have cost us over NZ $5,000 (US $3,325) per month. If there was a bright side to this diagnosis, that was it.

I think there were 3 lesions on her pleura, 2 lesions in her bones and a "mass" near her heart. I say "I think" because when they were giving us this diagnosis, I was thinking about the scene in "Breaking Bad" where Walt is being given a diagnosis of lung cancer, and as the doctor is talking about treatment options all he hears is a ringing noise, like tinnitus. It was a powerful scene, and I felt the same way.

My wife was, oddly, relieved. We'd agreed after the 1 April meeting not to google it or second-guess the doctors, and I'd carried on obliviously, thinking we might have to go through another round of surgery and maybe even chemotherapy, but we'd get through it just like before. She had promptly googled it and, based on what she'd read, thought she had months to live. To hear them talking about years rather than months was a relief.

We told the kids straight away. It's hard to know how they are processing it, because they don't often talk about it, and I don't usually ask because I don't have the reserves to support them while dealing with it myself. One night a couple of months ago I was helping my daughter do some homework and she was frustrated and started saying stupid things like, "I hate my life" which to her was just a phrase; it didn't have any meaning. But to me it was deeply upsetting and I blurted out something like, "Mum's going to die and you're complaining about your homework?" That did not end well.

The good news is she has responded to the drugs; there are no new lesions and her "cancer markers" have fallen from 150 to 50, which means nothing to me but the oncologists are quite pleased. After the first month -- when we were at the hospital two or three times per week -- we've gotten into a routine, seeing the oncologist once a month and having a CT scan every 3 months.  We saw the "palliative specialists" from the hospice and the doctor got my wife on a mix of fentanyl, paracetamol (acetaminophen) and ibuprofen which generally manage the pain. Unfortunately the hospice counsellor was useless, and my wife's one attempt to see the hospice physiotherapist ended when she couldn't find parking.

My wife gave up her job because the combination of the cancer, pain meds and endocrine therapy left her exhausted, and she wanted to spend what energy she had with the kids. She usually sleeps about 12 hours but it's very broken sleep. Sometimes she'll take a nap, but she's always been a very active person so I know it's difficult and frustrating for her.

Our friends ask us what they can do and I tell them, "Nothing yet." Right now she's still able to take care of the house and the meals and the kids and me. At some point that will change, but I can't even imagine it. Which is to say, I can't let myself imagine it. It's like getting too close to the edge of a cliff: The thought of falling is so terrifying, you can't imagine what it would be like to actually be falling.

We don't talk about it much; usually something sets us off and we end up just crying and trying to console each other. I can't imagine what it's like for her; we can talk about mortality in the abstract but we can't conceive of our own death. I'm sure she can't imagine what it's like for me, either; she has no idea how much I depend on her, how much her love enables me to just function every day. We often talked about growing old together, and in my mind this always ended with me going first because I could not conceive of life without her. I still can't.

Does it feel better to have written this? No. Does it feel better to talk to people about it? No. Does it feel better to know people who have gone through similar circumstances? No. My uncle often quoted his father (my maternal grandfather) and these words resonate now more than ever: "Sometimes there's just no use talking."

Monday, October 5, 2020

I voted

It's hard to believe it's been 12 years since I last voted. My birthday is just before election day and I've voted every year since I turned 18. However, I couldn't vote in the UK until I had citizenship, and I moved to New Zealand three days after I got that.

(If I had put my name on the electoral role before I left the UK, I would have been able to vote for Brexit, but I was more concerned with packing all my stuff and selling my car. Also, at the time I hadn't expected to leave Britain forever. I guess what I'm saying is that Brexit is my fault.)

As an American ex-pat I am able to vote for President, but only for President, and my vote goes to the electoral college for the state I last lived in, which is California. I understand the absentee ballots are only counted if the election is too close to call, and since California is always strongly democratic, it seemed like a complete waste of paper (and an expensive stamp).

New Zealand would let me vote once I had permanent residency, which I got one month *after* the 2017 election. And unlike the US, where you vote for a mix of federal, state, county and local officials at the same time, in New Zealand you have separate national and local elections National elections are every three years and you only get two votes: Your local parliament representative and your party vote.

I think I spoke about MMP (mixed member proportional representation) before but the quick recap is that parliament is adjusted to reflect the overall country. To put this in US terms, about 31% of Americans are registered as Democrats, 25% as Republican and 40% as "other." In the Senate, however, Republicans make up 53%, Democrats are 45% and "other" are 2%! That doesn't represent the country at all! If the US had MMP, the elected senators would still be there but the Democrat Party and third parties would be given extra seats so they made up 31% and 40%, respectively. It would no longer be a two-horse race and the third parties would have real leverage as the big parties needed their support to form a working majority.

So who did I vote for? The Labour party, lead by Jacinda Arden. Three years ago the National party had been in power for nine years, the economy was doing well, the Labour leader wasn't well-liked and the polls indicated Labour were going to have their worst result in history. Six months before the election, the Deputy Leader resigned and Jacinda was elected to replace her. Then two months before the election, the Labour leader stepped down, as well! Jacinda stepped up and ran an unrelentingly positive campaign. She was passionate, informed, empathic, and she didn't have a chance. She didn't win the election but she saved Labour and, more crucially, she stopped the National party from achieving a majority on its own. National had to form get a coalition to get a majority, but no third parties wanted to work with them!

Then a crazy thing happened: Jacinda formed a coalition with the "New Zealand First" party. They were unlikely bedfellows, much like the Tories and Liberal Democrats in the UK in 2010, but with the roles reversed. Jacinda, at 37, became the new Prime Minister. She was very likeable but her track record was a bit spotty - a lot of promises with little to show for it - and she may well have lost in the next election except for a little thing called Covid-19. By relying on the doctors and scientists, and expressing compassion, she got the entire country working together and was able to nearly eliminate the virus from New Zealand. It wasn't perfect and of course the New Zealand economy has taken a big hit, but everyone knew how much better they were compared to the rest of the world.

In 2017, rather than an historic defeat, Labour won 14 new seats. In 2020, they won an additional 19 seats, The National party, by contrast, lost 3 seats in 2017 and 23 seats in 2020! Going into 2020 they had a very unlikable leader; he was challenged by another member of the party and lost, but then the new leader stood down a few weeks later, allowing a third person -- Judith Collins -- to take the role. It should have been interesting, having two females contesting for the role of Prime Minister, but Judith ran a very mean campaign and everyone hated her.)

So in 2014, National had 60 seats and Labour had 32. In 2020, Labour has 65 seats and National has 33. Amazing how quickly the tides can turn.

(On a personal note, it's the first time I've ever voted for a liberal party. In the US, I always voted for the Libertarian Party* because, as I said, California was always going to vote Democrat so I didn't have to worry about keeping out Republicans.)

* True Libertarians, not scumbags like Rand Paul.